Crouched down beside my grocery cart at the store, phone to my ear, with my 1 year old in the cart seat being such a patient boy...my mother shared the news that the biopsy from her lung reported this is a new cancer not linked to her previous 3 breast cancers...and she has maybe a few months now. Stage IV adenocarcinoma of the right lung.
Impossible!
Two weeks ago my parents were visiting my brother in Virginia and out on a morning walk when Mom started having stroke-like symptoms. Her left arm was numb and her speech slurred. Dad and my brother rushed her to the Fairfax Hospital. They determined there were tumors and lesions in her brain, lungs and pelvis. They were all thought to be secondary cancers from her previous breast cancers. After overnight observation, my parents were able to get a flight out of Virginia back home. It was a miracle because flights were canceled and full all down the East Coast from Hurricane Sandy.
The next day, she was up at Huntsman Cancer Institute...first, three weeks of radiation to the brain and then... more...chemo... She had thought that when she moved here from VA two years ago, the oncologist at Huntsman had told her she didn't need to be seen anymore, but when she looked at her records last week, it showed that she was supposed to come back for monitoring every 6 months. They really "reminded" me over and over that I should NEVER let anyone tell me that I don't need to be monitored since I have the BRCA2 gene. This is kind of a gray area for me...I'm hoping insurance will still cover breast MRIs and mamograms each year.
It seems now that I can't get my mastectomy fast enough and it seems to crazy to me that right inbetween my prophylactic hysterectomy/oophrectomy and when I go in for the mastectomy that my mother is dying from our genetic predisposition right in front of me...
...and I feel helpless...
But I'm trying to think of EVERYTHING that we want to do with Mom before...
- So, I'm setting up family pictures (while she looks healthy) when the family is together for this Thanksgiving.
- I've started a "Family Question" each week, where I email my Mom, Dad and siblings and their spouses with a question. Everyone hits "reply all" and we learn about each other over the miles of distance that separate us. Questions like, "Tell me about your first job" (family history type questions) and "Share a favorite memory you have with Mom and a memory you have with Dad". So far these have been really great to read!
- I'll videotape Mom and have her respond to some prepared questions.
- Attend the LDS temple together often as a family
- I think it would be nice to have her write a card for each of my children for their big events...baptism,12th birthday when they go into Young Womens at church, 16th birthday when they start to drive, 19th birthday when they can serve a mission for the LDS church, their wedding day, and when they have their first child. It may be too much to ask if she's tired, but idealy it would be nice.
- We'll enjoy time together...like decorating Gingerbread homes together and going to see the Christmas lights at Temple Square.
WHAT ELSE?
She and my Dad are putting up a good front and pushing forward, but at times I hear the sorrow, the "unsure" about what the dying process will be like and the "unsure" of what life will be like without one another. I feel the comfort of the Holy Ghost for me and in their journey together. They know that because they have been faithful and have been sealed in the temple, we are able to be a family forever. Mom isn't "afraid" of dying and now that it's such a prominent possibility, she ponders it more and is ready to experience life beyond the veil. I know she's grateful that she has been able to raise her children to adulthood. She and Dad have been such strong and committed partners to each other. I'm grateful for the love that they share. I am blessed to have such wonderful parents!
Thursday, November 15, 2012
Friday, November 9, 2012
Estrogen?
I went in for my follow up with my Oncological Gyn, Dr. Soisson. They said to come in after 4 to 6 weeks from my hyst/ooph, but I wanted to wait longer to see how my body reacted to not having estrogen producing ovaries.
It certainly did take 6 weeks before I felt back to normal. Despite the fact that I had done a recent 5K and family triathlon, and thought that recovery wouldn't really take 4 to 6 weeks...IT DID! I am still hessitant a bit to get into the full swing, but am pretty much there. I do feel a little distracted with all that is going on, and all that I am trying to accomplish. Sometimes I feel like I am doing a lot and getting close to nowhere.
So, back to the follow up visit...Dr. Soisson spoke with me about estrogen. We discussed the Women's Health Initiative Study. He said that generally the women who were on estrogen and the women who just dieted and exercised had about the same outcomes in getting breast cancer, but he suggested I be on a low dose estrogen for "Heart Health". I want to be assured that the .6 Premparin low dose
#1 Won't "feed" my cancer predisposition and contribute to me getting breast, peritoneal or whatever cancers the BRCA2 gene is and isn't linked to
and
#2 Will actually be beneficial for my heart. I need to research a bit more.
I think I will probably fill the script after my mastectomy? (less breast tissue)... I am still nervous about the remaining breast tissue that won't be taken and about the other areas of my body that can get cancer. You can really get crazy if you dwell on this stuff...just got to do your best and live your life right and live it well! I've also heard a story about a woman who had a mastectomy and the cancer went into her chest "because it had nowhere else to go"...is that medically sound or a wive's tale? So many questions...
Women's Health InitiativeThe WHI was launched in 1991 and consisted of a set of clinical trials and an observational study, which together involved 161,808 generally healthy postmenopausal women (aged 50-79 years over 15 years.)
It certainly did take 6 weeks before I felt back to normal. Despite the fact that I had done a recent 5K and family triathlon, and thought that recovery wouldn't really take 4 to 6 weeks...IT DID! I am still hessitant a bit to get into the full swing, but am pretty much there. I do feel a little distracted with all that is going on, and all that I am trying to accomplish. Sometimes I feel like I am doing a lot and getting close to nowhere.
So, back to the follow up visit...Dr. Soisson spoke with me about estrogen. We discussed the Women's Health Initiative Study. He said that generally the women who were on estrogen and the women who just dieted and exercised had about the same outcomes in getting breast cancer, but he suggested I be on a low dose estrogen for "Heart Health". I want to be assured that the .6 Premparin low dose
#1 Won't "feed" my cancer predisposition and contribute to me getting breast, peritoneal or whatever cancers the BRCA2 gene is and isn't linked to
and
#2 Will actually be beneficial for my heart. I need to research a bit more.
I think I will probably fill the script after my mastectomy? (less breast tissue)... I am still nervous about the remaining breast tissue that won't be taken and about the other areas of my body that can get cancer. You can really get crazy if you dwell on this stuff...just got to do your best and live your life right and live it well! I've also heard a story about a woman who had a mastectomy and the cancer went into her chest "because it had nowhere else to go"...is that medically sound or a wive's tale? So many questions...
Women's Health InitiativeThe WHI was launched in 1991 and consisted of a set of clinical trials and an observational study, which together involved 161,808 generally healthy postmenopausal women (aged 50-79 years over 15 years.)
The clinical trials were designed to test the effects of postmenopausal hormone therapy, diet modification, and calcium and vitamin D supplements on heart disease, fractures, and breast and colorectal cancer.
The hormone trial had two studies: the estrogen-plus-progestin study of women with a uterus and the estrogen-alone study of women without a uterus. (Women with a uterus were given progestin in combination with estrogen, a practice known to prevent endometrial cancer.) In both hormone therapy studies, women were randomly assigned to either the hormone medication being studied or to placebo.
From Wikipedia, the free encyclopedia
The Women's Health Initiative (WHI) was initiated by the U.S. National Institutes of Health (NIH) in 1991. The Women's Health Initiative consisted of clinical trials and observational research conducted to address major health issues causing morbidity and mortality in postmenopausal women. In particular, randomized controlled trials were designed and funded that addressed cardiovascular disease, cancer, and osteoporosis. In its entirety, the WHI studied more than 160,000 postmenopausal women aged 50-79 years over 15 years.
This trial found that, compared with placebo, women receiving estrogen plus progestin experienced:[1]
The trial was conducted among women with hysterectomy so that estrogen could be administered without a progestin. In women with a uterus, a progestin is needed to counteract the risk of endometrial cancer posed by unopposed estrogen.
Major results of this study were that, compared with placebo, women receiving estrogen alone experienced:[1]
The WHI Postmenopausal Hormone Therapy Trials were part of the effort to address the high risk of cardiovascular disease in older women. By the early 1990s, many physicians had come to interpret results from previous clinical trials and studies using experimental animals as indicating that administration of an estrogen supplement to postmenopausal women would lower the incidence of cardiovascular disease. Two hormone clinical trials were designed and conducted:
The estrogen that was administered in the WHI studies was conjugated equine estrogen (CEE). This consists of a mixture of estrogens isolated from horse urine (Premarin). The CEE was administered orally. Both studies were randomized, placebo-controlled studies. Half the women were given an inactive placebo rather than hormone(s). Both studies were terminated early because a reduction in cardiovascular disease was not observed for most women and some women had dangerous side-effects. In particular, an increased risk of dangerous blood clotting is associated with oral administration of CEE. A review of the observational and WHI estrogen trial results describes potential explanations for the conflicting results.
In addition, co-administration of MPA (medroxyprogesterone acetate, a type of progestin) with CEE was associated with a slightly increased risk of breast cancer. Some benefits of using an estrogen supplement such as reduced risk of bone fractures were confirmed by these studies. However, for the older postmenopausal women who were recruited for this study, the undesirable side-effects of treatment generally were greater than the health benefits. Based on the results of these studies, CEE and MPA are no longer given to women in order to try to prevent cardiovascular disease in older women. Younger postmenopausal women seeking relief from conditions such as hot flashes, sleep disturbance and urinary/vaginal atrophy are still candidates for hormone replacement therapy. Alternatives to orally administered CEE and MPA are being increasingly used by women since the termination of the WHI studies. For example, other forms of estrogen (such as esterified estrogens) or topical administration of estradiol may reduce the risk of blood clotting compared to that for oral CEE.[7]
Finally, the low fat dietary pattern trial of the WHI yielded conflicting and controversial results. However, the WHI trial has been argued as unnecessary by many scientists, who already knew a full decade ago that total fat intake is not related to cardiovascular risk nor postmenopausal breast cancer risk.
Women enrolled in the WHI were 63 years old on average, asymptomatic, and on average a decade had passed since the onset of their menopause. Furthermore, the focus of the WHI study was disease prevention. Most women take hormone replacement therapy to treat symptoms of menopause rather than for disease prevention and therefore the risks and benefits of hormone replacement therapy in the general population differ from the women included in the WHI.
Post-study analysis showed that the age of hormone replacement initiation plays a major role in the risk of heart disease and breast cancer. Women who begin hormone replacement therapy 10 years after menopause have much greater risk than women who begin therapy less than 10 years after menopause. In the estrogen-only trial of WHI, women from 50-59 years taking estrogen had fewer heart attacks, deaths, and adverse events than women taking placebo while women from 70-79 years taking estrogen has more heart attacks, death, and adverse events than women taking placebo.
Women in the WHI estrogen-only trial had a mean duration of therapy of 6 years. Women in the estrogen-progestin trial had an even shorter duration of hormone therapy. The risks and benefits of long-term hormone replacement therapy are unknown.
The dietary trial has been criticized by epidemiologists for its lack of validity, both internal (the desired endpoint for fat reduction in diet was not fully achieved)[8] as well as external (a group of post menopausal women is not generalizable to all women).[9] Finally, the mechanism of disease of developing breast cancer may have a significantly longer time course than the duration of the study,[10] and intervention may have been most effective prior to menopause.[11]
Study components
There are actually 4 different randomized interventions and a separate observational-only cohort in the WHI. All 4 of the randomized components overlap with each other to some extent (and a few even overlap with the observational study). The 4 interventions and their abbreviated terminology are:Estrogen-progestin versus placebo
This phase studied estrogen, specifically conjugated equine estrogen, plus progestin (Prempro, Wyeth) compared to placebo (the "WHI-E+P" trial), among healthy postmenopausal women.This trial found that, compared with placebo, women receiving estrogen plus progestin experienced:[1]
- increased risk of myocardial infarction ("heart attack")
- increased risk of stroke
- increased risk of blood clots, including deep venous thrombosis (DVT) and pulmonary embolism (PE)
- increased risk of breast cancer
- decreased risk of colorectal cancer
- fewer fractures
Conjugated estrogen versus placebo
This trial studied estrogen, specifically conjugated equine estrogen (Premarin, Wyeth), alone versus placebo (the "WHI-CEE" trial) in women with prior hysterectomy.The trial was conducted among women with hysterectomy so that estrogen could be administered without a progestin. In women with a uterus, a progestin is needed to counteract the risk of endometrial cancer posed by unopposed estrogen.
Major results of this study were that, compared with placebo, women receiving estrogen alone experienced:[1]
- no difference in risk for myocardial infarction
- an increased risk of stroke
- an increased risk of blood clots
- an uncertain effect on breast cancer risk
- no difference in risk for colorectal cancer
- a reduced risk of fracture
Calcium and vitamin D versus placebo
This trial compared calcium plus vitamin D versus placebo ("WHI-CalcVitD"). It had two primary endpoints:- Colorectal cancer endpoint: Long term daily supplementation of calcium with vitamin D had no effect on the incidence of colorectal cancer among postmenopausal women.[4]
- Fracture endpoint: Long term daily supplementation of calcium with vitamin D resulted in a small but significant improvement in hip bone density, but did not significantly reduce the number of hip fractures, and increased the risk of kidney stones.[5]
Non-intervention cohort
The non-interventional observational cohort study ("WHI-OS") observed 93,000 women drawn from the same national clinical coordinating centers (many epidemiology studies conducted within this observational component of the WHI).The WHI Postmenopausal Hormone Therapy Trials were part of the effort to address the high risk of cardiovascular disease in older women. By the early 1990s, many physicians had come to interpret results from previous clinical trials and studies using experimental animals as indicating that administration of an estrogen supplement to postmenopausal women would lower the incidence of cardiovascular disease. Two hormone clinical trials were designed and conducted:
The estrogen that was administered in the WHI studies was conjugated equine estrogen (CEE). This consists of a mixture of estrogens isolated from horse urine (Premarin). The CEE was administered orally. Both studies were randomized, placebo-controlled studies. Half the women were given an inactive placebo rather than hormone(s). Both studies were terminated early because a reduction in cardiovascular disease was not observed for most women and some women had dangerous side-effects. In particular, an increased risk of dangerous blood clotting is associated with oral administration of CEE. A review of the observational and WHI estrogen trial results describes potential explanations for the conflicting results.
In addition, co-administration of MPA (medroxyprogesterone acetate, a type of progestin) with CEE was associated with a slightly increased risk of breast cancer. Some benefits of using an estrogen supplement such as reduced risk of bone fractures were confirmed by these studies. However, for the older postmenopausal women who were recruited for this study, the undesirable side-effects of treatment generally were greater than the health benefits. Based on the results of these studies, CEE and MPA are no longer given to women in order to try to prevent cardiovascular disease in older women. Younger postmenopausal women seeking relief from conditions such as hot flashes, sleep disturbance and urinary/vaginal atrophy are still candidates for hormone replacement therapy. Alternatives to orally administered CEE and MPA are being increasingly used by women since the termination of the WHI studies. For example, other forms of estrogen (such as esterified estrogens) or topical administration of estradiol may reduce the risk of blood clotting compared to that for oral CEE.[7]
Finally, the low fat dietary pattern trial of the WHI yielded conflicting and controversial results. However, the WHI trial has been argued as unnecessary by many scientists, who already knew a full decade ago that total fat intake is not related to cardiovascular risk nor postmenopausal breast cancer risk.
Criticisms
Upon halting the estrogen-progestin study in women with a uterus in 2002, many women feared using hormone replacement due to the risks of heart disease and breast cancer. Many postmenopausal women stopped their hormone replacement in the mid 2000's with the release of results from the WHI and subsequently the incidence of breast cancer was reduced by thousands of women each year. Despite the reduction in the incidence of breast cancer, experts questioned the applicability of the WHI to the general population.Women enrolled in the WHI were 63 years old on average, asymptomatic, and on average a decade had passed since the onset of their menopause. Furthermore, the focus of the WHI study was disease prevention. Most women take hormone replacement therapy to treat symptoms of menopause rather than for disease prevention and therefore the risks and benefits of hormone replacement therapy in the general population differ from the women included in the WHI.
Post-study analysis showed that the age of hormone replacement initiation plays a major role in the risk of heart disease and breast cancer. Women who begin hormone replacement therapy 10 years after menopause have much greater risk than women who begin therapy less than 10 years after menopause. In the estrogen-only trial of WHI, women from 50-59 years taking estrogen had fewer heart attacks, deaths, and adverse events than women taking placebo while women from 70-79 years taking estrogen has more heart attacks, death, and adverse events than women taking placebo.
Women in the WHI estrogen-only trial had a mean duration of therapy of 6 years. Women in the estrogen-progestin trial had an even shorter duration of hormone therapy. The risks and benefits of long-term hormone replacement therapy are unknown.
The dietary trial has been criticized by epidemiologists for its lack of validity, both internal (the desired endpoint for fat reduction in diet was not fully achieved)[8] as well as external (a group of post menopausal women is not generalizable to all women).[9] Finally, the mechanism of disease of developing breast cancer may have a significantly longer time course than the duration of the study,[10] and intervention may have been most effective prior to menopause.[11]
Monday, November 5, 2012
Surgeon Visits
THE DATE IS SET! ....end of January. I remember when I was getting ready the morning of my hyst/ooph and I had to stop "thinking" about my surgery and physically "walk myself to the car". It will probably be the same thing this time too.
I really do trust my general and plastic surgeon. They have both been such good listeners, so informed, and I can tell they are detailed and confident in what they do. I feel blessed to have them as my surgeons!
So Friday, my plastic surgeon spoke with me about what I'd like to have done. We talked about how I am a good candidate for expanders and implants and that I don't really have a lot of fat to do the BRAVA fat grafting procedure for the size of breast that I desire in the end. Dr. Ferguson said he expects a very nice outcome for me. He took measurements of my breasts and showed me some pictures since I asked to see some of his work. He also said that after the implant switch surgery and after I heal, we can see if I need to have any fat graft work to soften up hard implant lines and edges. I was hoping that we might do the inframammary incision, but I may not get the best results with that incision. It seems that if you are smaller breasted, the under-the-breast incision may not allow for as much expansion as the lateral incision from the areola out towards the arm. Also, thin-skinned patients don't expand as well with the inframammary incision. Dr Ferguson said that the scar also only allows about 80% elasticity of normal skin, so won't stretch as well. He said that the most important thing for scarring is to use a lotion and massage the scars well (after they are healed). That is the most effective at reducing scarring.
I met with Dr. Reading today and discussed the incision point. She said that in trimmer patients, it is easier for her to see where the skin/fat/tissue edge is and gets right up to the blood vessles. She will scoop out the nipple tissue as well. She said that the nipple may scar over, but expects that I will still have nipple profile. I will probably lose sensation in my breasts as well. She wrote orders for my breast MRI so that we won't have any surprises before the mastectomy.
I am so grateful for these two physicians! I have confidence in their ability and trust them! I am apprehensive about the unknown, but excited to reduce my risk of breast cancer. Close to 90% down to less than 10%! I will still need to be diligent in self screening and other screening, but will be happy knowing I have tried doing all I can do to be here for my family!
I really do trust my general and plastic surgeon. They have both been such good listeners, so informed, and I can tell they are detailed and confident in what they do. I feel blessed to have them as my surgeons!
So Friday, my plastic surgeon spoke with me about what I'd like to have done. We talked about how I am a good candidate for expanders and implants and that I don't really have a lot of fat to do the BRAVA fat grafting procedure for the size of breast that I desire in the end. Dr. Ferguson said he expects a very nice outcome for me. He took measurements of my breasts and showed me some pictures since I asked to see some of his work. He also said that after the implant switch surgery and after I heal, we can see if I need to have any fat graft work to soften up hard implant lines and edges. I was hoping that we might do the inframammary incision, but I may not get the best results with that incision. It seems that if you are smaller breasted, the under-the-breast incision may not allow for as much expansion as the lateral incision from the areola out towards the arm. Also, thin-skinned patients don't expand as well with the inframammary incision. Dr Ferguson said that the scar also only allows about 80% elasticity of normal skin, so won't stretch as well. He said that the most important thing for scarring is to use a lotion and massage the scars well (after they are healed). That is the most effective at reducing scarring.
I met with Dr. Reading today and discussed the incision point. She said that in trimmer patients, it is easier for her to see where the skin/fat/tissue edge is and gets right up to the blood vessles. She will scoop out the nipple tissue as well. She said that the nipple may scar over, but expects that I will still have nipple profile. I will probably lose sensation in my breasts as well. She wrote orders for my breast MRI so that we won't have any surprises before the mastectomy.
I am so grateful for these two physicians! I have confidence in their ability and trust them! I am apprehensive about the unknown, but excited to reduce my risk of breast cancer. Close to 90% down to less than 10%! I will still need to be diligent in self screening and other screening, but will be happy knowing I have tried doing all I can do to be here for my family!
Thursday, November 1, 2012
Hyst/ooph Recovery
I feel a lot stronger now that it's been over 6 weeks out. I am able to carry my little baby boy around without a problem. I have more energy. I am still reluctant to go for full out runs and resume yoga, but hope to do so soon.
I was soooo worried about hot flashes and other early-menopause side effects. So far I have been very pleased. I do get warmer at times, but it's really not bad. A few times I mentioned that I feel warm and my husband has said, "Me too!" or "That's because it's hot in here!", so I am not sure how often I am getting hot flashes. I hope that it stays like this where I am hardly bothered by the temperature change. At night sometimes I do need to flip off my covers for a little bit, but then like to pull them back up.
I was having to get up to go pee at least once a night towards the end of the 6 weeks, but now am able to sleep through the night again without having to get up.
I haven't noticed a change in my mood or behavior (Better ask my husband about that one to find out the real scoop:)
I would like to have more energy, but think I may still be a little tired.
There have been wonderful friends and family members who have been super patient and supportive in helping me to heal. I LOVE THEM!!!
All in all, I feel so blessed that my surgery went well. I am going in to meet with Dr. Soisson next week for the post-op check-up.
I was soooo worried about hot flashes and other early-menopause side effects. So far I have been very pleased. I do get warmer at times, but it's really not bad. A few times I mentioned that I feel warm and my husband has said, "Me too!" or "That's because it's hot in here!", so I am not sure how often I am getting hot flashes. I hope that it stays like this where I am hardly bothered by the temperature change. At night sometimes I do need to flip off my covers for a little bit, but then like to pull them back up.
I was having to get up to go pee at least once a night towards the end of the 6 weeks, but now am able to sleep through the night again without having to get up.
I haven't noticed a change in my mood or behavior (Better ask my husband about that one to find out the real scoop:)
I would like to have more energy, but think I may still be a little tired.
There have been wonderful friends and family members who have been super patient and supportive in helping me to heal. I LOVE THEM!!!
All in all, I feel so blessed that my surgery went well. I am going in to meet with Dr. Soisson next week for the post-op check-up.
Wednesday, September 26, 2012
The Pee Indicator
What hurts the most is having to go pee. That first night after surgery, the reason I think I felt like I was dealing with constant pregnancy contractions is because I had to pee so badly...and I couldn't. The weight just pushed on my new injury and it hurt so badly to try to pee that I couldn't physically do it.
Now, it doesn't hurt that much, but it still hurts the most at this point. I think when I no longer feel the pain of peeing that I will be pretty much recovered.
Today I had quite a scare. For the most part I could tell my healing was coming along because my insides didn't hurt quite as much though I still felt tugging. A real indicator was that I didn't have much blood...but today there was a lot! A lot! So, I called the doctor's office in a panic. The nurse asked if I've been lifting and doing much house work. She pinned me right away.
Ever since our sweet baby boy has been home, I've been lifting him a bit (not a lot)...getting him out of his crib, carrying him to the deck, to the fridge for milk... And I've been loading the dishwasher, bathing the kids, picking up constantly, folding laundry, sweeping and cleaning counters and appliances. It seems that I've been doing less of that than normal so I sort of thought I was taking it easy? But maybe the housework and the baby have pushed it too far. My insides hurt a lot more today too.
It's so crazy because I feel okay enough to do these things. I feel like I have energy in the morning, but by afternoon I am tired. It's only since Friday (3 to 4 days) that James has been home and I've gotten myself in a pickle.
We were all so excited when Baby Boy came back home after a week and it's so hard to see him leave again, but I think I'm going to have to ask my in-laws to take him. It's the only way I can really rest. Maybe one more week away and then have him home to sleep and for his morning nap and find someone each day to take him. I hate this part. I and We already miss him. We'll see if I can do it. I worry about him when he's not with me.
But I worry about myself if I don't take it easy... the reason I'm doing this is to be around for my family...so get better, do it right, do it faster by taking care of myself.
Now, it doesn't hurt that much, but it still hurts the most at this point. I think when I no longer feel the pain of peeing that I will be pretty much recovered.
Today I had quite a scare. For the most part I could tell my healing was coming along because my insides didn't hurt quite as much though I still felt tugging. A real indicator was that I didn't have much blood...but today there was a lot! A lot! So, I called the doctor's office in a panic. The nurse asked if I've been lifting and doing much house work. She pinned me right away.
Ever since our sweet baby boy has been home, I've been lifting him a bit (not a lot)...getting him out of his crib, carrying him to the deck, to the fridge for milk... And I've been loading the dishwasher, bathing the kids, picking up constantly, folding laundry, sweeping and cleaning counters and appliances. It seems that I've been doing less of that than normal so I sort of thought I was taking it easy? But maybe the housework and the baby have pushed it too far. My insides hurt a lot more today too.
It's so crazy because I feel okay enough to do these things. I feel like I have energy in the morning, but by afternoon I am tired. It's only since Friday (3 to 4 days) that James has been home and I've gotten myself in a pickle.
We were all so excited when Baby Boy came back home after a week and it's so hard to see him leave again, but I think I'm going to have to ask my in-laws to take him. It's the only way I can really rest. Maybe one more week away and then have him home to sleep and for his morning nap and find someone each day to take him. I hate this part. I and We already miss him. We'll see if I can do it. I worry about him when he's not with me.
But I worry about myself if I don't take it easy... the reason I'm doing this is to be around for my family...so get better, do it right, do it faster by taking care of myself.
Saturday, September 22, 2012
Expanders vs One Step with Alloderm
Another question: Would I be a good candidate for the direct to implant procedure?
Is it true that you are a one step candidate only if you want to go about the same size, slightly larger or smaller?
Is it true that you have to get expanders if you have "thin skin"?
Here is good insight from the FORCE message boards:
"Direct to implant vs expander question":
-just wondering if the information told to me by a PS was infact correct or not..... she said you cant do direct to implant (w/out expanders) unless you are going SMALLER than you already are. That direct to implant would not have as favorable results and again could only be done if you are going smaller (even with the use of alloderm) . To stay the same size or go larger you need to get expanders. All these options are WITHOUT nipple sparing. I had thought I heard of ppl staying the same size or even going larger and not doing expanders. Has anyone done this (and what did you think of the results?)
Thank you for the info!
-Originally I was going to do immediate implants but once it was determined that they were unable to spare the nipple in the cancerous side, they needed to do expanders. There just is not enough tissue there to put an implant in, particularly if you want to go larger. The skin needs to be stretched in order for the implant to fit. Hope that helps. If you were doing nipple sparing then I believe you can go somewhat larger. That is what my PS told me.
-I used the ny doctors for my one step (nipple sparing) and was able to go up about 1/cup size. I think ps who are not comfortable with the direct to implant procedure often say what your ps told you. I am 4 months out and my results are awesome.
-I did one-step, did not do NS. What they do during surgery is once the breast tissue is taken out they weight it and that gives them a place to start with implants. I know that my last appointment with the PS prior to surgery they try to measure your breasts to at least get a good idea of what size implants they need, but they do bring in more than one set to surgery. I was a C and had no desire to be any bigger after surgery and I would say I am still a C, although I don't wear a bra so not exactly sure. I have 450cc Mentor high profile implants. Don't forget there is always that chance that they might have to do expanders if your skin is too thin--I was warned about that, but the PS also knew that implants were my first choice and expanders a huge distant 2nd choice.
TOPIC "Do you like your implants?"
-I had expanders and now have had my implants for almost 3 months. Most of the time, I do LOVE them. There's a small, mostly unnoticeable divot at the top of the left one that I might do fat grafting for - but all my friends and my husband tell me they don't even see it. I think it's just my overanalyzing them. They are definitely an upgrade for me! I went from an A (after nursing 3 kids) to a C. I don't have to wear a bra EVER and they look great, young, perky, natural. And they feel great! I don't even notice them most of the time. I do feel a different sensation when I do push ups or certain machines at the gym, but it's not painful at all - just odd. I also wanted to do one step, but my surgeon said my skin was too thin, or something like that. the expanders were not bad, and the exchange surgery was a breeze. The time before the surgery was definitely awful - I spent all my time browsing the internet looking at pictures of reconstruction and boobs - I can tell you that the other side is SOOOOO much better. You'll get there!!!
Is it true that you are a one step candidate only if you want to go about the same size, slightly larger or smaller?
Is it true that you have to get expanders if you have "thin skin"?
Here is good insight from the FORCE message boards:
"Direct to implant vs expander question":
-just wondering if the information told to me by a PS was infact correct or not..... she said you cant do direct to implant (w/out expanders) unless you are going SMALLER than you already are. That direct to implant would not have as favorable results and again could only be done if you are going smaller (even with the use of alloderm) . To stay the same size or go larger you need to get expanders. All these options are WITHOUT nipple sparing. I had thought I heard of ppl staying the same size or even going larger and not doing expanders. Has anyone done this (and what did you think of the results?)
Thank you for the info!
-Originally I was going to do immediate implants but once it was determined that they were unable to spare the nipple in the cancerous side, they needed to do expanders. There just is not enough tissue there to put an implant in, particularly if you want to go larger. The skin needs to be stretched in order for the implant to fit. Hope that helps. If you were doing nipple sparing then I believe you can go somewhat larger. That is what my PS told me.
-I used the ny doctors for my one step (nipple sparing) and was able to go up about 1/cup size. I think ps who are not comfortable with the direct to implant procedure often say what your ps told you. I am 4 months out and my results are awesome.
-I did one-step, did not do NS. What they do during surgery is once the breast tissue is taken out they weight it and that gives them a place to start with implants. I know that my last appointment with the PS prior to surgery they try to measure your breasts to at least get a good idea of what size implants they need, but they do bring in more than one set to surgery. I was a C and had no desire to be any bigger after surgery and I would say I am still a C, although I don't wear a bra so not exactly sure. I have 450cc Mentor high profile implants. Don't forget there is always that chance that they might have to do expanders if your skin is too thin--I was warned about that, but the PS also knew that implants were my first choice and expanders a huge distant 2nd choice.
TOPIC "Do you like your implants?"
-I had expanders and now have had my implants for almost 3 months. Most of the time, I do LOVE them. There's a small, mostly unnoticeable divot at the top of the left one that I might do fat grafting for - but all my friends and my husband tell me they don't even see it. I think it's just my overanalyzing them. They are definitely an upgrade for me! I went from an A (after nursing 3 kids) to a C. I don't have to wear a bra EVER and they look great, young, perky, natural. And they feel great! I don't even notice them most of the time. I do feel a different sensation when I do push ups or certain machines at the gym, but it's not painful at all - just odd. I also wanted to do one step, but my surgeon said my skin was too thin, or something like that. the expanders were not bad, and the exchange surgery was a breeze. The time before the surgery was definitely awful - I spent all my time browsing the internet looking at pictures of reconstruction and boobs - I can tell you that the other side is SOOOOO much better. You'll get there!!!
Nipples or No Nipples?
I am wondering again...do I keep my nipples? I know it's BREAST TISSUE. Some physicians recommend that the risk is minimal in keeping the nipple since you are drastically reducing your risk with the double mastectomy. I know I would feel that I did everything I could do if I removed them...got everything I could. I know that keeping my nipples would be due to vanity...but...
Here is some insight:
FORCE MAIN MESSAGE BOARD:
TOPIC: "REMOVE OR KEEP MY NIPPLES"
-there is a 5-10% chance either way. there have been 2 recent studies, one from sloan kettering and one from georgetown, both of which found that NS did not increase chances of cancer. one or both were retrospective. i remember in one study, only one person had a recurrence, and her surgery had been for DCIS, not prophylactic. there should be citations for these studies on the boards somewhere.
-I'm in my mid-40s, BRCA2, and I had breast cancer. My bilateral mastectomy was performed one year ago, with my breast surgeon - chief surgeon at a major cancer/academic medical center -- recommending that I keep my nipples (even the one on the cancer side). I did so, and I'm so thankful for his recommendation on a daily basis! NSM is harder for surgeons to perform, so please make sure you ask how many of these he/she has done. According to one study, "NSM has been considered safe in women with small, peripherally located tumors, without multicentricity, or for prophylactic mastectomy." http://www.ncbi.nlm.nih.gov/pmc/article ... 921821.pdf. Good luck with your decision.
TOPIC: "NIPPLE SPARING LONG TERM STUDY"
-Here is another supportive ten year study released recently by MSKCC!!!
http://www.ncbi.nlm.nih.gov/pubmed/21847697
Nipple-sparing mastectomy for breast cancer and risk-reducing surgery: the Memorial Sloan-Kettering Cancer Center experience.
Breast Service, Department of Surgery, Memorial Sloan-Kettering Cancer Center, New York, NY, USA.
Abstract
BACKGROUND: Nipple-sparing mastectomy (NSM) has been gathering increased recognition as an alternative to more traditional mastectomy approaches. Initially, questions concerning its oncologic safety limited the use of NSM. Nevertheless, mounting evidence supporting the practice of NSM for both prophylactic and oncologic purposes is leading to its more widespread use and broadened indications.
METHODS: Using a prospectively maintained database, we reviewed our experience of 353 NSM procedures performed in 200 patients over the past 10 years.
RESULTS: The indications for surgery were: 196 prophylactic risk-reduction (55.5%), 74 ductal carcinoma in situ (DCIS) (20.8%), 82 invasive cancer (23.2%), and 1 phyllodes tumor (0.5%). The nipple areolar complex (NAC) was entirely preserved in 341 mastectomies (96.7%). There were 11 patients (3.1%) who were found to have cancer at the nipple margin, warranting further excision. A total of 69 breasts (19.5%) had some degree of skin desquamation or necrosis, but only 12 (3.3%) required operative debridement, of which 3 breasts (1%) necessitated removal of a breast implant. Also, 6 patients (2%) were treated for infection. Of the 196 prophylactic NSMs, 11 specimens (5.6%) were found to harbor occult cancer (8 DCIS and 3 invasive cancers). One patient who underwent NSM for invasive ductal carcinoma in 2006 developed metastatic disease to her brain. No other recurrences are attributable to the 353 NSMs.
CONCLUSIONS: The trends demonstrate the increasing acceptance of NSM as a prophylactic procedure as well as for therapeutic purposes. Although NSM is not standard, our experience supports the selective use of NSM in both prophylactic and malignant settings.
-http://explore.georgetown.edu/news/?ID= ... lateID=295
Georgetown University Medical Center
If I get my nipples removed and have nipple reconstruction...here is some good insight:
-My plastic surgeon has also advised me to wait 3 months or more after the swap for the nipple reconstruction. He thinks I will be happier with that timing because the implants will have a chance to settle in and the nipple will look more natural. He stressed he will reconstruct nipples when he swaps if I am feeling in need of them then, but he advises waiting. I am choosing to wait because I have already invested so much time and effort in the process that I figure what's a few more months to be happier with the end result.
Here is some insight:
FORCE MAIN MESSAGE BOARD:
TOPIC: "REMOVE OR KEEP MY NIPPLES"
-there is a 5-10% chance either way. there have been 2 recent studies, one from sloan kettering and one from georgetown, both of which found that NS did not increase chances of cancer. one or both were retrospective. i remember in one study, only one person had a recurrence, and her surgery had been for DCIS, not prophylactic. there should be citations for these studies on the boards somewhere.
-I'm in my mid-40s, BRCA2, and I had breast cancer. My bilateral mastectomy was performed one year ago, with my breast surgeon - chief surgeon at a major cancer/academic medical center -- recommending that I keep my nipples (even the one on the cancer side). I did so, and I'm so thankful for his recommendation on a daily basis! NSM is harder for surgeons to perform, so please make sure you ask how many of these he/she has done. According to one study, "NSM has been considered safe in women with small, peripherally located tumors, without multicentricity, or for prophylactic mastectomy." http://www.ncbi.nlm.nih.gov/pmc/article ... 921821.pdf. Good luck with your decision.
TOPIC: "NIPPLE SPARING LONG TERM STUDY"
-Here is another supportive ten year study released recently by MSKCC!!!
http://www.ncbi.nlm.nih.gov/pubmed/21847697
Nipple-sparing mastectomy for breast cancer and risk-reducing surgery: the Memorial Sloan-Kettering Cancer Center experience.
Breast Service, Department of Surgery, Memorial Sloan-Kettering Cancer Center, New York, NY, USA.
Abstract
BACKGROUND: Nipple-sparing mastectomy (NSM) has been gathering increased recognition as an alternative to more traditional mastectomy approaches. Initially, questions concerning its oncologic safety limited the use of NSM. Nevertheless, mounting evidence supporting the practice of NSM for both prophylactic and oncologic purposes is leading to its more widespread use and broadened indications.
METHODS: Using a prospectively maintained database, we reviewed our experience of 353 NSM procedures performed in 200 patients over the past 10 years.
RESULTS: The indications for surgery were: 196 prophylactic risk-reduction (55.5%), 74 ductal carcinoma in situ (DCIS) (20.8%), 82 invasive cancer (23.2%), and 1 phyllodes tumor (0.5%). The nipple areolar complex (NAC) was entirely preserved in 341 mastectomies (96.7%). There were 11 patients (3.1%) who were found to have cancer at the nipple margin, warranting further excision. A total of 69 breasts (19.5%) had some degree of skin desquamation or necrosis, but only 12 (3.3%) required operative debridement, of which 3 breasts (1%) necessitated removal of a breast implant. Also, 6 patients (2%) were treated for infection. Of the 196 prophylactic NSMs, 11 specimens (5.6%) were found to harbor occult cancer (8 DCIS and 3 invasive cancers). One patient who underwent NSM for invasive ductal carcinoma in 2006 developed metastatic disease to her brain. No other recurrences are attributable to the 353 NSMs.
CONCLUSIONS: The trends demonstrate the increasing acceptance of NSM as a prophylactic procedure as well as for therapeutic purposes. Although NSM is not standard, our experience supports the selective use of NSM in both prophylactic and malignant settings.
-http://explore.georgetown.edu/news/?ID= ... lateID=295
Georgetown University Medical Center
| FOR IMMEDIATE RELEASE: October 27, 2011 | |
| CONTACT: | Karen Mallet (media only) km463@georgetown.edu |
 | |
Georgetown Researchers Examine 21-Year Series of Nipple Sparing Mastectomy Cases and Find No Cancers | |
WASHINGTON, D.C. -- A new study suggests some women needing a lumpectomy or mastectomy to treat their breast cancer have another potential option that is safe and effective, say researchers at Georgetown. They say the procedure known as a nipple sparing mastectomy is also a viable surgical option for women who choose to have their breasts removed because of their increased risk of developing the disease. For both groups of women, the surgery offers a chance for a more natural looking and normal feeling reconstructed breast as compared to other forms of mastectomy. Nipple sparing mastectomy (NSM) involves the removal of the breast tissue while keeping intact the breast skin and nipple areola complex, which includes the nipple and darker pigmented circle of skin that surrounds it. The breast is usually reconstructed immediately. A long standing concern with this type of surgery is that cancer cells might be left under the nipple, posing a threat over time. To examine the effectiveness of NSM, surgeons conducted a review of patient records for all women receiving the surgery at Georgetown University Hospital (GUH) between 1989 and 2010 including surgeries to either prevent or treat breast cancer. The results are published in the November issue of Plastic and Reconstructive Surgery, the official medical journal of the American Society of Plastic Surgeons. “Our findings were reassuring. Of the 162 surgeries performed, we found no cancer recurrences and no new cancers in those receiving NSM,” says Scott Spear, M.D., professor of plastic surgery at Georgetown University Medical Center and chairman of the department of plastic surgery at GUH. “The nipple-sparing technique is not appropriate for every patient depending upon their anatomy and type of breast pathology. Careful selection of the right patient for NSM is an important element of success.” Some patients who received NSM at Georgetown had early-stage cancer or DCIS, which can become an invasive cancer if not treated properly. In fact, while the majority of women with early cancers typically have a lumpectomy, many women choose to have a mastectomy. Georgetown breast cancer surgeon Shawna C. Willey, M.D., says the first priority always is to treat or prevent the cancer. “We need to be able to offer women options that they know will successfully treat or prevent their cancer while at the same time, preserve their quality of life whether it be in their appearance or psychologically. Nipple sparing mastectomy goes a long way toward reaching that goal.” Willey is chief of breast cancer surgery at GUH, and she and Spear are members of the Georgetown Lombardi Comprehensive Cancer Center. One step credited for why cancers didn’t develop later is that biopsies were done on the tissue that remained under the nipple area after the NSM. If abnormal cells in this tissue were identified, as it was in four cases reviewed, either the nipple or entire nipple areola complex later were removed. A second concern for this kind of surgery is that the nipple areola complex (NAC) might not receive enough blood after the tissue and blood vessels below it are removed causing necrosis or tissue death. Researchers say the records showed three NACs became necrotic and required removal. Four other NACs had partial necrosis requiring surgery though the nipple and majority of the areola was spared. “What we’ve learned from this review is that our established procedures and patient-selection protocol lead to favorable results,” confirms Spear. “As more data become available, I think we’ll see nipple sparing mastectomy play a larger role, particularly in the prevention setting.” This work was not supported by any external funding. In addition to Spear and Willey, authors include Elizabeth D. Feldman, M.D., Costanza Cocilovo, M.D., Mary Sidawy, M.D., Ali Al-Attar, M.D., Ph.D., Catherine Hannan, M.D., Laura Seiboth, M.D., and Maurice Y. Nahabedian, M.D. Spear and Nahabedian are paid consultants to Lifecell and Allergan Corporations. None of the remaining authors report having personal financial interests related to the study. About Georgetown Lombardi Comprehensive Cancer Center Georgetown Lombardi Comprehensive Cancer Center, part of Georgetown University Medical Center and Georgetown University Hospital, seeks to improve the diagnosis, treatment, and prevention of cancer through innovative basic and clinical research, patient care, community education and outreach, and the training of cancer specialists of the future. Georgetown Lombardi is one of only 40 comprehensive cancer centers in the nation, as designated by the National Cancer Institute, and the only one in the Washington, DC, area. For more information, go to http://lombardi.georgetown.edu. About Georgetown University Medical Center Georgetown University Medical Center is an internationally recognized academic medical center with a three-part mission of research, teaching and patient care (through MedStar Health). GUMC’s mission is carried out with a strong emphasis on public service and a dedication to the Catholic, Jesuit principle of cura personalis -- or "care of the whole person." The Medical Center includes the School of Medicine and the School of Nursing & Health Studies, both nationally ranked; Georgetown Lombardi Comprehensive Cancer Center, designated as a comprehensive cancer center by the National Cancer Institute; and the Biomedical Graduate Research Organization (BGRO), which accounts for the majority of externally funded research at GUMC including a Clinical Translation and Science Award from the National Institutes of Health. In fiscal year 2010-11, GUMC accounted for 85 percent of the university’s sponsored research funding. | |
If I get my nipples removed and have nipple reconstruction...here is some good insight:
-My plastic surgeon has also advised me to wait 3 months or more after the swap for the nipple reconstruction. He thinks I will be happier with that timing because the implants will have a chance to settle in and the nipple will look more natural. He stressed he will reconstruct nipples when he swaps if I am feeling in need of them then, but he advises waiting. I am choosing to wait because I have already invested so much time and effort in the process that I figure what's a few more months to be happier with the end result.
Incidence of Breast Cancer after a double Mastectomy
I thought I'd look to see if there are studies showing the recurrance rate of cancer after a mastectomy. This is after someone has already had cancer. I wonder if my chance of getting it is even lower than that... Here are some insights I found around the web.
Susan G Komen for the cure site:
For those who have cancer in one to three nodes, the chance of local recurrence in five years is about 16 percent. Radiation therapy can reduce this risk to about two percent [89].
The chance of local recurrence increases to about 26 percent when cancer is in four or more lymph nodes [89]. Radiation therapy to the chest wall after mastectomy is given routinely when there are four or more positive nodes. This reduces the risk of local recurrence in five years to about six percent for those with positive lymph nodes [89].
Dr. SUsan Love Research Foundation:
Local Recurrence After Mastectomy Approximately 20–30 percent of women with local recurrences after mastectomy have already been diagnosed with metastatic disease and another 20–30 percent will develop it within a few months of diagnosis. Therefore, just as with local recurrences after breast conservation, tests should be done to look for distant disease. These tests may include a bone scan, chest X-ray, CT scan, MRI, or PET scan. They may also incorporate some blood tests, among which are tests for tumor markers. Local recurrence after mastectomy usually shows up as one or more nodules on or under the skin in or near the scar. With implants, the recurrences are in front of the implant. With a flap, the recurrences are not in the flap itself (tissue from the abdomen) but along the edge of the old breast skin.
Most commonly the lesion will be removed surgically and followed by radiation to the chest wall if the woman has not previously had radiation. Occasionally, even larger lesions will be surgically removed, including sections of rib and breastbone. Although this approach has not been shown to increase survival, it can improve the quality of life by preventing further local spread, which can be difficult to manage.
Despite aggressive local treatment, up to 80–85 percent of women with an isolated local recurrence following mastectomy will eventually develop distant metastases. For this reason, systemic therapy is sometimes used in this group as well. There are, however, no randomized controlled studies showing an advantage to restarting systemic therapy at this time rather than waiting and using it if and when metastatic disease appears. The biggest predictor of overall survival is the length of time between the original therapy and the recurrence or the length of the disease-free interval. The later the recurrence, the better
Susan G Komen for the cure site:
Mastectomy and local recurrence
With mastectomy, the best predictor of local recurrence is how far the cancer has spread in the lymph nodes. The chance of local recurrence in five years is about six percent for women with negative lymph nodes (do not contain cancer) [89].For those who have cancer in one to three nodes, the chance of local recurrence in five years is about 16 percent. Radiation therapy can reduce this risk to about two percent [89].
The chance of local recurrence increases to about 26 percent when cancer is in four or more lymph nodes [89]. Radiation therapy to the chest wall after mastectomy is given routinely when there are four or more positive nodes. This reduces the risk of local recurrence in five years to about six percent for those with positive lymph nodes [89].
Dr. SUsan Love Research Foundation:
Local Recurrence After Mastectomy Approximately 20–30 percent of women with local recurrences after mastectomy have already been diagnosed with metastatic disease and another 20–30 percent will develop it within a few months of diagnosis. Therefore, just as with local recurrences after breast conservation, tests should be done to look for distant disease. These tests may include a bone scan, chest X-ray, CT scan, MRI, or PET scan. They may also incorporate some blood tests, among which are tests for tumor markers. Local recurrence after mastectomy usually shows up as one or more nodules on or under the skin in or near the scar. With implants, the recurrences are in front of the implant. With a flap, the recurrences are not in the flap itself (tissue from the abdomen) but along the edge of the old breast skin.
Most commonly the lesion will be removed surgically and followed by radiation to the chest wall if the woman has not previously had radiation. Occasionally, even larger lesions will be surgically removed, including sections of rib and breastbone. Although this approach has not been shown to increase survival, it can improve the quality of life by preventing further local spread, which can be difficult to manage.
Despite aggressive local treatment, up to 80–85 percent of women with an isolated local recurrence following mastectomy will eventually develop distant metastases. For this reason, systemic therapy is sometimes used in this group as well. There are, however, no randomized controlled studies showing an advantage to restarting systemic therapy at this time rather than waiting and using it if and when metastatic disease appears. The biggest predictor of overall survival is the length of time between the original therapy and the recurrence or the length of the disease-free interval. The later the recurrence, the better
Wednesday, September 19, 2012
Auntie
I want to remember and so I journal...
Days before the surgery, Aunt Theresa was on my mind. Weeks earlier, she had passed after a 4 year battle with ovarian cancer. What cancer took from our family is still so vivid as I think about all of my mother's family gathering to be together at Aunt Theresa's funeral.
Theresa is the definition of "hard-worker" and "service". She was always the first one up to clean the table and help with dishes when they came to visit...even when she was in the middle of chemo treatments. She worked honestly at her humble employment. She saved her money and on her modest income, was able to pay off a lovely home and take care of her disabled husband. She had such a soft heart and was the first to tears when it was time to say goodbye. Theresa is an amazing lady! We miss her.
As I sat outside of the surgery OR room in my little bed with my blue cap on, I talked to Theresa...asking for her strength and support. I know she was right in there beside me making sure everything was running smoothly.
That first very rough night, I prayed to my Heavenly Father for comfort. I also took comfort from Theresa again. I needed to feel her support and her immense strength. A very strong woman... I felt her comfort and love that night.
I know that Theresa's experience helped me to make this very difficult decision. I am grateful for her life and example. We love you Theresa!
Days before the surgery, Aunt Theresa was on my mind. Weeks earlier, she had passed after a 4 year battle with ovarian cancer. What cancer took from our family is still so vivid as I think about all of my mother's family gathering to be together at Aunt Theresa's funeral.
Theresa is the definition of "hard-worker" and "service". She was always the first one up to clean the table and help with dishes when they came to visit...even when she was in the middle of chemo treatments. She worked honestly at her humble employment. She saved her money and on her modest income, was able to pay off a lovely home and take care of her disabled husband. She had such a soft heart and was the first to tears when it was time to say goodbye. Theresa is an amazing lady! We miss her.
As I sat outside of the surgery OR room in my little bed with my blue cap on, I talked to Theresa...asking for her strength and support. I know she was right in there beside me making sure everything was running smoothly.
That first very rough night, I prayed to my Heavenly Father for comfort. I also took comfort from Theresa again. I needed to feel her support and her immense strength. A very strong woman... I felt her comfort and love that night.
I know that Theresa's experience helped me to make this very difficult decision. I am grateful for her life and example. We love you Theresa!
Monday, September 17, 2012
Every Day is Better...
Last night I wasn't sure if I was feeling hot flashes, or I was just getting a bit hot. It will be interesting to see how things go as far as side effects these upcoming weeks.
Every day is getting easier. Sleep is still difficult, but better. I was on Toredol in the hospital (drip), but since I've been home, I've been on 600mg Ibuprofen, 2 Tylenol (1000mg), and a Gas X every 6 hours. I've also been sipping a glass of Miralax water each day. I'd say that definitely has all been helping. They sent me home with a purcocet script, but I am weary to take it since I am caring for the girls a bit and want to be "present". I feel a little pain, but am pretty well controlled.
Dan has been sick too, poor boy, and been sleeping and feeling out of it, but I think he's feeling better today. Last night in bed, he asked, "Are you glad you did it?" After an affirmative, he said "Me too". Despite the difficult choice to stop having children, we are both so grateful that I was cancer free and we can enjoy our lovely life together with our wonderful children. So grateful.
Saturday, September 15, 2012
Game Day
Keep in mind this post is just after surgery and on my phone keyboard:
Mom and dad came over early Thursday morning to help get the girls off to school. Thank goodness! We needed the extra time to get ready and leave for the hopital. We were to check in at nine but we ended up waiting an hour and a half after the 10:25 projected surgery start time since Dr. Soisson was finishing up at another hospital. A young man wheeled my bed down the hall with Dan walking beside me. Then dan kissed me goodbye and I was parked outside the OR room. The nurse, anesthesiologisy doc and physician resident spoke with me while we waited for Soisson. I was attired in long compression hose, socks, net panties and the gown....and a blue cap to keep in my hair. When Dr soisson arrived, he was full of energy and asked again to make sure I was ready...I thought back to the check in stage where I had to sign a consent to sterilization form, so stark and cold and set me on the edge of tears. even as I write this post from my phone keypad in my hospital bed, I feel a peace from having this procedure behind me. Before surgery the resident reminded me that I am still at risk for cancers in the peritoneal cavity but I am greatly reducing my risk of other cancers. So the anesthesiologist dripped some loopy meds into my iv and i remember saying "I thank you in advance and you look great in green"...okay...
I remember waking up groggy in recovery and slipping back into slep often. Then I rememeber being in my room with Dan at my bedside while I am trying to answer the nurse's questions and Dan was answering for me. I remember talking to Dan for a sec and then sleeping and waking up to tell Dan to go on ahead home since i couldn't stay awake anyway.
Last night was the worst night of sleep of my life. I felt the gas pain in my ribs and shoulders from the nonflammable CO2 they pumped in me to be able to see during the procedure. I had urine sitting sooo heavily on my bladder and I tried several times to get up and go without succcess. Each time I got up it was easier, but still so difficult and I felt dizzy and nausiated. They thought they were going to have to put in a catheter. Finally after a bag of fluids and the third attempt I was able to urinate and it made a huge difference in my pain level in my tummy . I went potty about two hours later again and it helped relieve the tummy pain. All night it seemed like I was trying to sleep while being on the verge of transition labor contractions, plus the gas pain in my ribs and shoulders and the back pain from lying uncomfortably. After the second potty trip and some meds i was able to rest better around 2 am I guess.
Interestingly a girl from labs came to draw blood at 3 am. She also has the BRCA2 and last year she was tested for the gene and had a hyst ooph. Her cousin had just died at age thirty two of ovarian cancer so that's why she was tested. When they opened her up, they found ovarian cancer in its early stages. She has been doing chemo this past year. I am so blessed that they said I looked clean. The lab tech told me about a support site called hystasisters.com so I'll go check it out. She said they share about the side effects and treatments they are undergoing. This morning another lab tech came in and she was from the Czech Republic so we had a nice visit and chat in Czech. She escaped communist Czech in the early eighties while on vacation to Yugoslavia. She is from Olomouc, a city where I served. It was fun to speak with her. Heavenly Father sent me some lovely people to encourage and lift me.
Every hour I am supposed to take ten breathes into a breathing tube to prevent pneumonia. My calvees have been constantly hooked up to leg squeezers to prevent blood clots. I had a nice breakfast omlet, oatmeal and fruit. I have been up walking a bit and taking it easy in bed. I am to consult with Dr. Soisson in four to six weeks and not be on any HRT or drugs for menopausal symptoms. I'll have to see how it goes and then we'll talk hormone ish therapy.
I am in more pain than I had anticipated, but am grateful for a clean outcome. Truly blessed.
Mom and dad came over early Thursday morning to help get the girls off to school. Thank goodness! We needed the extra time to get ready and leave for the hopital. We were to check in at nine but we ended up waiting an hour and a half after the 10:25 projected surgery start time since Dr. Soisson was finishing up at another hospital. A young man wheeled my bed down the hall with Dan walking beside me. Then dan kissed me goodbye and I was parked outside the OR room. The nurse, anesthesiologisy doc and physician resident spoke with me while we waited for Soisson. I was attired in long compression hose, socks, net panties and the gown....and a blue cap to keep in my hair. When Dr soisson arrived, he was full of energy and asked again to make sure I was ready...I thought back to the check in stage where I had to sign a consent to sterilization form, so stark and cold and set me on the edge of tears. even as I write this post from my phone keypad in my hospital bed, I feel a peace from having this procedure behind me. Before surgery the resident reminded me that I am still at risk for cancers in the peritoneal cavity but I am greatly reducing my risk of other cancers. So the anesthesiologist dripped some loopy meds into my iv and i remember saying "I thank you in advance and you look great in green"...okay...
I remember waking up groggy in recovery and slipping back into slep often. Then I rememeber being in my room with Dan at my bedside while I am trying to answer the nurse's questions and Dan was answering for me. I remember talking to Dan for a sec and then sleeping and waking up to tell Dan to go on ahead home since i couldn't stay awake anyway.
Last night was the worst night of sleep of my life. I felt the gas pain in my ribs and shoulders from the nonflammable CO2 they pumped in me to be able to see during the procedure. I had urine sitting sooo heavily on my bladder and I tried several times to get up and go without succcess. Each time I got up it was easier, but still so difficult and I felt dizzy and nausiated. They thought they were going to have to put in a catheter. Finally after a bag of fluids and the third attempt I was able to urinate and it made a huge difference in my pain level in my tummy . I went potty about two hours later again and it helped relieve the tummy pain. All night it seemed like I was trying to sleep while being on the verge of transition labor contractions, plus the gas pain in my ribs and shoulders and the back pain from lying uncomfortably. After the second potty trip and some meds i was able to rest better around 2 am I guess.
Interestingly a girl from labs came to draw blood at 3 am. She also has the BRCA2 and last year she was tested for the gene and had a hyst ooph. Her cousin had just died at age thirty two of ovarian cancer so that's why she was tested. When they opened her up, they found ovarian cancer in its early stages. She has been doing chemo this past year. I am so blessed that they said I looked clean. The lab tech told me about a support site called hystasisters.com so I'll go check it out. She said they share about the side effects and treatments they are undergoing. This morning another lab tech came in and she was from the Czech Republic so we had a nice visit and chat in Czech. She escaped communist Czech in the early eighties while on vacation to Yugoslavia. She is from Olomouc, a city where I served. It was fun to speak with her. Heavenly Father sent me some lovely people to encourage and lift me.
Every hour I am supposed to take ten breathes into a breathing tube to prevent pneumonia. My calvees have been constantly hooked up to leg squeezers to prevent blood clots. I had a nice breakfast omlet, oatmeal and fruit. I have been up walking a bit and taking it easy in bed. I am to consult with Dr. Soisson in four to six weeks and not be on any HRT or drugs for menopausal symptoms. I'll have to see how it goes and then we'll talk hormone ish therapy.
I am in more pain than I had anticipated, but am grateful for a clean outcome. Truly blessed.
Wednesday, September 12, 2012
Feel My Guts
I was just unloading the dishwasher and trying to "feel" my girlie parts inside of me. Will I notice that they aren't there after Thursday? I guess all of my other organs just fill in the empty space. Interesting...
On Monday, I went into Salt Lake for a dental visit to fill a cavity. I think the experience left me with a stuffy nose and sore throat and I hope that I'll be able to have the procedure on Thursday. I called the office and they said to gargle with salt water and that if I do get a fever, then I can't have the procedure done.
After the dentist, I was in a dress so I could slip into the temple and share my heart with Heavenly Father. I pulled into the empty parking lot...this could be why I haven't attended the temple on a Monday. The temple was closed. I pulled into a parking stall and knelt in the back of my van, resting my elbows up on the bench. I felt like I needed to do everything that I could to make the effort to know that this was the right time to close the opportunity to have children.
This morning in the shower, I wept again...frightened, thinking about another little James that we aren't going to have. "It's okay...it's okay...it's okay..." I tell myself outloud to comfort the hurt.
It's such a tug-of-war with time. Dan said that he doesn't want to be the one to influence my decision either way because the results of both decisions are so great. Either I have the surgery now and we close the door on having more children, or we wait to do the surgery and things could be fine...or I could get cancer. It seems like I've been so lucky so far.
My body has worked perfectly for me all through my life. What a huge blessing. I've been healthy and athletic, been strong with little sickness. I've been able to bear four wonderful children. It seems almost CRAZY that I would interrupt this great blessing of health. Early menopause, night sweats, hot flashes, mood swings, inability to sleep at night...These are the trade offs I take for peace of mind. Seems like a lot. But, I am obviously trying to avoid cancer, the worse of all of these inconveniences.
I appreciate the love that my friends and family are showing in abundance...phone calls, running errands or taking on tasks for me, bringing meals and caring for my children. I can't believe that I won't be able to lift James for almost 6 weeks. This seems impossible! It's difficult to let James live with NanaPapa for this next week. Thank goodness they are willing; it would be impossible for me to care for him. It seems the timing is premature with such a little one still at home, but when is the time right? Racing the clock. I'm so grateful for these little people.
I pray that I'll be normal-ish and not on constant mood swings. I want so much to enjoy the time I have with our children and with Daniel.
I spoke with a woman on the phone while I sat in the temple parking lot. She had so many girlie problems that after two children at age 28, she had all of her girlie parts removed. She also talked about "what if" she were able to have more, but is so grateful for her two children. It hurt my heart, but helped me see that I'm not the only one who grieves this loss.
She did encourage me to stay positive and remember that no matter what side effects, I'm doing this to be with my family. I have to remember to actively CHOOSE to enjoy the time I have with my family. I can CHOOSE to be pleasant, loving and kind at all times. I CHOOSE to be grateful for this BRCA2 knowledge. I CHOOSE to stay positive and get beyond the side effects and LIVE MY LIFE! OUR LIFE!
On Monday, I went into Salt Lake for a dental visit to fill a cavity. I think the experience left me with a stuffy nose and sore throat and I hope that I'll be able to have the procedure on Thursday. I called the office and they said to gargle with salt water and that if I do get a fever, then I can't have the procedure done.
After the dentist, I was in a dress so I could slip into the temple and share my heart with Heavenly Father. I pulled into the empty parking lot...this could be why I haven't attended the temple on a Monday. The temple was closed. I pulled into a parking stall and knelt in the back of my van, resting my elbows up on the bench. I felt like I needed to do everything that I could to make the effort to know that this was the right time to close the opportunity to have children.
This morning in the shower, I wept again...frightened, thinking about another little James that we aren't going to have. "It's okay...it's okay...it's okay..." I tell myself outloud to comfort the hurt.
It's such a tug-of-war with time. Dan said that he doesn't want to be the one to influence my decision either way because the results of both decisions are so great. Either I have the surgery now and we close the door on having more children, or we wait to do the surgery and things could be fine...or I could get cancer. It seems like I've been so lucky so far.
My body has worked perfectly for me all through my life. What a huge blessing. I've been healthy and athletic, been strong with little sickness. I've been able to bear four wonderful children. It seems almost CRAZY that I would interrupt this great blessing of health. Early menopause, night sweats, hot flashes, mood swings, inability to sleep at night...These are the trade offs I take for peace of mind. Seems like a lot. But, I am obviously trying to avoid cancer, the worse of all of these inconveniences.
I appreciate the love that my friends and family are showing in abundance...phone calls, running errands or taking on tasks for me, bringing meals and caring for my children. I can't believe that I won't be able to lift James for almost 6 weeks. This seems impossible! It's difficult to let James live with NanaPapa for this next week. Thank goodness they are willing; it would be impossible for me to care for him. It seems the timing is premature with such a little one still at home, but when is the time right? Racing the clock. I'm so grateful for these little people.
I pray that I'll be normal-ish and not on constant mood swings. I want so much to enjoy the time I have with our children and with Daniel.
I spoke with a woman on the phone while I sat in the temple parking lot. She had so many girlie problems that after two children at age 28, she had all of her girlie parts removed. She also talked about "what if" she were able to have more, but is so grateful for her two children. It hurt my heart, but helped me see that I'm not the only one who grieves this loss.
She did encourage me to stay positive and remember that no matter what side effects, I'm doing this to be with my family. I have to remember to actively CHOOSE to enjoy the time I have with my family. I can CHOOSE to be pleasant, loving and kind at all times. I CHOOSE to be grateful for this BRCA2 knowledge. I CHOOSE to stay positive and get beyond the side effects and LIVE MY LIFE! OUR LIFE!
Tuesday, September 11, 2012
Pre-Surgery Instructions
I registered with the hospital on the phone today...and was later called with pre-surgery instructions:
-They will call tomorrow with the actual time that I need to be at the hospital on Thursday
-Stop taking my fish oil
-Do not eat or drink after midnight (no gum, candy, mints, ice chips...) I can brush my teeth in the morning, but only swish and spit
-They told me where to arrive at the hospital with my photo ID and insurance card
-I can't wear any jewler
-Wear loose clothing you can take off easily and put on when you leave to go home
-Wash the night before or that morning with an anti-bacterial soap
-only 2 adults with you and no small children
-They will call tomorrow with the actual time that I need to be at the hospital on Thursday
-Stop taking my fish oil
-Do not eat or drink after midnight (no gum, candy, mints, ice chips...) I can brush my teeth in the morning, but only swish and spit
-They told me where to arrive at the hospital with my photo ID and insurance card
-I can't wear any jewler
-Wear loose clothing you can take off easily and put on when you leave to go home
-Wash the night before or that morning with an anti-bacterial soap
-only 2 adults with you and no small children
Tuesday, August 28, 2012
Ooph/Hyst Post Care
Okay, I'm going to compile all of the advice that I've found to care for yourself after a hysterectomy/oophrectomy:
-Drink lots of water and hydrate yourself. Someone even mentioned something about drinking lots of water vitamins?
-After you bathe, don't towel dry, but apply baby lotion or oils and air dry. Then use creams or lotions to keep your skin hydrated.
-Take a Calcium and Vit D supplement
-Someone said that small amounts of estrogen are not harmful, even with the BRCA genes. She is on the patch Climara and started right after surgery with .1 dose. After 4 months, dropped down to half that. (Not sure about being able to be on estrogen, since many cancers are "fed" by estrogen)
-Exercise
-Possibly need vaginal gels/lubricants for intercourse
-My dear friend shared: "I visited with my sister yesterday (the one who just had a hysterectomy) and she said the most painful thing was the first bowl movement, ahhh, I remember that too. So make sure you are eating high fiber and taking some type of stool softener afterwards. The doctors rarely tell you about this, it take some time to get your bowels going again so you don't want to do much pushing :). Also I have a pillow for you that I used after my surgery that helped a lot. Whenever you sit up you put the pillow on your belly for support."
-Drink lots of water and hydrate yourself. Someone even mentioned something about drinking lots of water vitamins?
-After you bathe, don't towel dry, but apply baby lotion or oils and air dry. Then use creams or lotions to keep your skin hydrated.
-Take a Calcium and Vit D supplement
-Someone said that small amounts of estrogen are not harmful, even with the BRCA genes. She is on the patch Climara and started right after surgery with .1 dose. After 4 months, dropped down to half that. (Not sure about being able to be on estrogen, since many cancers are "fed" by estrogen)
-Exercise
-Possibly need vaginal gels/lubricants for intercourse
-My dear friend shared: "I visited with my sister yesterday (the one who just had a hysterectomy) and she said the most painful thing was the first bowl movement, ahhh, I remember that too. So make sure you are eating high fiber and taking some type of stool softener afterwards. The doctors rarely tell you about this, it take some time to get your bowels going again so you don't want to do much pushing :). Also I have a pillow for you that I used after my surgery that helped a lot. Whenever you sit up you put the pillow on your belly for support."
Microsurgery chat
I finally was able to connect with a family member of my friend who had a double mastectomy after finding out about her breast cancer. She wanted to reconstruct with her own tissue so she wouldn't have to worry about implants. She searched around and said that it's hard to find surgeons who perform microsurgery (reconstruction where they have to cut and reconnect blood vessles...micro work). She finally decided to travel into Utah to have her reconstruction and said very few surgeons in Utah perform these procedures and she was grateful to find such skilled surgeons.
Dr. Theresa Reading performed her mastectomy. She said that Dr. Reading was excellent! That was encouraging because I really liked her too when I met with her and I've heard great things about her! Yay! I feel really comfortable about using Dr. Reading, especially with the insight that she is thorough about getting as much tissue as possible.
Dr. June Chen (http://www.jschenmd.com/) was her plastic surgeon. She said that Dr. Chen was excellent! She performed her DIEP. She said that even now when she goes in for a mamogram, the techs can't tell that she has undergone reconstruction, they look so great. She said she never imagined her breasts would look this great. At first after the initial surgery and the swelling had gone down, she said her breasts were very small. Now that she has gained a little weight (before surgery she had lost a ton of weight), her breasts have gained weight too, since they are fat, and she says she looks GREAT! She said her breasts are perkier than most women her age.
Recovery: She said that she found it most comfortable to sleep in a recliner. She said she wasn't on narcotics and could drive within a week, but kept her elbows down and didn't wear a safety belt across her chest. She did lose her voice with the intibation, but said she is prone to losing her voice for various reasons anyway. She also said to GET A GOOD BRA! She went into Victoria's Secret and found a great shaping bra with no underwire.
Dr. Chen's office sells a scar cream in their office. She ended up purchasing the same scar cream online at the "skin store cosmetic store"(skinstore.com?), where they matched Dr. Chen's office price and also she used a coupon (and got free shipping). She said it was very expensive and very worth it! Her scars are minimal to gone!
6 months later, she had her nipple reconstructed. She said that she went light on her areola tatooing and they have faded now, so I might go a little darker originally. I am worried about the tatooing. I want the areolas to look great and the colors to be textured like real areolas. I'm hopeful that I can find an "artist".
I'm grateful I had the chance to speak with her. She was very positive! Here are some of her motivating insights and empowering thoughts:
- You are not 1/2 a woman!
-Every day will get better after surgery. Just know that every day will get better!
-You have to have the mental attitude to BE HAPPY!
-"Own it!" Know that you have made a smart decision and embrace your choice. Don't act like a victim...be empowered that you are in control of your life!
-Do whatever you want to do...stay in good shape! Live your life! Take the BEST CARE OF YOURSELF!
-Be Strong! Be Beautiful! Be Happy!
Dr. Theresa Reading performed her mastectomy. She said that Dr. Reading was excellent! That was encouraging because I really liked her too when I met with her and I've heard great things about her! Yay! I feel really comfortable about using Dr. Reading, especially with the insight that she is thorough about getting as much tissue as possible.
Dr. June Chen (http://www.jschenmd.com/) was her plastic surgeon. She said that Dr. Chen was excellent! She performed her DIEP. She said that even now when she goes in for a mamogram, the techs can't tell that she has undergone reconstruction, they look so great. She said she never imagined her breasts would look this great. At first after the initial surgery and the swelling had gone down, she said her breasts were very small. Now that she has gained a little weight (before surgery she had lost a ton of weight), her breasts have gained weight too, since they are fat, and she says she looks GREAT! She said her breasts are perkier than most women her age.
Recovery: She said that she found it most comfortable to sleep in a recliner. She said she wasn't on narcotics and could drive within a week, but kept her elbows down and didn't wear a safety belt across her chest. She did lose her voice with the intibation, but said she is prone to losing her voice for various reasons anyway. She also said to GET A GOOD BRA! She went into Victoria's Secret and found a great shaping bra with no underwire.
Dr. Chen's office sells a scar cream in their office. She ended up purchasing the same scar cream online at the "skin store cosmetic store"(skinstore.com?), where they matched Dr. Chen's office price and also she used a coupon (and got free shipping). She said it was very expensive and very worth it! Her scars are minimal to gone!
6 months later, she had her nipple reconstructed. She said that she went light on her areola tatooing and they have faded now, so I might go a little darker originally. I am worried about the tatooing. I want the areolas to look great and the colors to be textured like real areolas. I'm hopeful that I can find an "artist".
I'm grateful I had the chance to speak with her. She was very positive! Here are some of her motivating insights and empowering thoughts:
- You are not 1/2 a woman!
-Every day will get better after surgery. Just know that every day will get better!
-You have to have the mental attitude to BE HAPPY!
-"Own it!" Know that you have made a smart decision and embrace your choice. Don't act like a victim...be empowered that you are in control of your life!
-Do whatever you want to do...stay in good shape! Live your life! Take the BEST CARE OF YOURSELF!
-Be Strong! Be Beautiful! Be Happy!
Tuesday, July 31, 2012
The Date is Set!
My mother reminded me again over Sunday dinner that I need to get on the horn and schedule my hysterectomy/oophrectomy soon! I needed that prodding, because I am very much dragging my feet. This morning, I called Dr. Soisson's office and set up the surgery for FRIDAY, SEPTEMBER 14th! It feels okay. I'm glad I'm doing it. My aunt is going through the last stages of ovarian cancer...I know that I have the power to avoid that path...and yet I drag my feet...
But today, I DID IT! As I write those words and as I wrote the date on my calendar, tears build up. I think that fear of the unknown is what holds me back. I'll look back and say, "I am so happy that I had the courage to do that hard thing!" I know I'll say that. Right now, going through the "courageous steps" is the scariest thing I've done...maybe ever.
When I was consulting with Dr. Soisson, I remember thinking that this was not the big surgery. Since it wasn't cosmetic, it wasn't going to be that emotional as having my breast mastectomy and reconstruction. Right now, it seems that this one IS the big surgery, since the side effects are so life-challenging (hot flashes, inability to sleep at night, loss of libido, short-temper). Goodness!
"Goodness!" was the text that Dan sent me this morning when I texted him and my family that I had set the surgery date. I know what he means...goodness! What a game-changer. I really need his patience and support. His understanding is what is going to make this whole process livable. It's either me alive with the inconveniences that these surgeries bring or it's me with cancer or gone. I pray that the setbacks will not be as large and inconvenient as I imagine they could be. I think I'll come through this okay and my daughters and son will find courage in my example. Because, ultimately, I'm doing this so that I can be here for Dan and the children. If I were a lone woman in the business world, there wouldn't be as much to live for.
My mother texted me back, "Finally! Proud of u!" That's what I need. Encouragement, Reinforcement that I am making the right choices.
I am so going to need the help of everyone, SO GOING TO NEED THEIR LOVE AND PATIENCE! I am very lucky to have such a wonderful husband and great parents and in-law-parents who will care for me and the children. Thank goodness James is able to drink from a sippy cup! I won't be able to lift him for a while.
It's going to be okay!
But today, I DID IT! As I write those words and as I wrote the date on my calendar, tears build up. I think that fear of the unknown is what holds me back. I'll look back and say, "I am so happy that I had the courage to do that hard thing!" I know I'll say that. Right now, going through the "courageous steps" is the scariest thing I've done...maybe ever.
When I was consulting with Dr. Soisson, I remember thinking that this was not the big surgery. Since it wasn't cosmetic, it wasn't going to be that emotional as having my breast mastectomy and reconstruction. Right now, it seems that this one IS the big surgery, since the side effects are so life-challenging (hot flashes, inability to sleep at night, loss of libido, short-temper). Goodness!
"Goodness!" was the text that Dan sent me this morning when I texted him and my family that I had set the surgery date. I know what he means...goodness! What a game-changer. I really need his patience and support. His understanding is what is going to make this whole process livable. It's either me alive with the inconveniences that these surgeries bring or it's me with cancer or gone. I pray that the setbacks will not be as large and inconvenient as I imagine they could be. I think I'll come through this okay and my daughters and son will find courage in my example. Because, ultimately, I'm doing this so that I can be here for Dan and the children. If I were a lone woman in the business world, there wouldn't be as much to live for.
My mother texted me back, "Finally! Proud of u!" That's what I need. Encouragement, Reinforcement that I am making the right choices.
I am so going to need the help of everyone, SO GOING TO NEED THEIR LOVE AND PATIENCE! I am very lucky to have such a wonderful husband and great parents and in-law-parents who will care for me and the children. Thank goodness James is able to drink from a sippy cup! I won't be able to lift him for a while.
It's going to be okay!
Friday, July 27, 2012
Frustrating to find out that ANOTHER HIGHLY RECOMMENDED SURGEON is not covered by my insurance. First, the Huntsman Cancer Institute is NOT covered...really? EVERY insurance should be covering the premier cancer institute in the state! Now, this other surgeon isn't covered. I hope to find another highly recommended physician to get a second opinion. This is frustrating and so much effort!
Aetna gave me the names of plastic surgeons covered in the area. So tonight I am trying to search the web for information on these providers. One practice has very informative videos on their website. they explain various methods of reconstruction and show a pros/cons list of the various methods. This is well worth a viewing.
You can access the videos at http://content.understand.com/Players/Flash/?page=Menu&account=warnock. If this link doesn't work, then go to
http://premierplasticsurgerygroup.com and click on the tab "View Procedures in 3D". Then click on "Breast" and "Breast Reconstruction" from a drop down menu.
Aetna gave me the names of plastic surgeons covered in the area. So tonight I am trying to search the web for information on these providers. One practice has very informative videos on their website. they explain various methods of reconstruction and show a pros/cons list of the various methods. This is well worth a viewing.
You can access the videos at http://content.understand.com/Players/Flash/?page=Menu&account=warnock. If this link doesn't work, then go to
http://premierplasticsurgerygroup.com and click on the tab "View Procedures in 3D". Then click on "Breast" and "Breast Reconstruction" from a drop down menu.
Friday, July 20, 2012
Guest Post: Heather Von St James
I was contacted by Heather. She said she'd like to share her story on her blog. She has experienced a different type of cancer, but I think the threads of fear, courage and triumph are resonant in all of our stories.
In all the experiences I had gone through in my life, having my daughter was the most miraculous. From the time I found out I was pregnant, my life had gained new meaning. My pregnancy was stress-free and it wasn’t long before I welcomed Lily into the world via C-section on August 4, 2005. My “village”, which included my husband, our parents and our dear friends, came to wish our new family luck. To say our life was pure bliss was an understatement.
Although I loved staying home with Lily, I returned to work when she was just four weeks old. Obviously, I was nervous to leave her. I had no energy and spent my days feeling fatigued and breathless. I reassured myself that these feelings were attributed to the baby blues. Eventually, I decided to see the doctor and get a physical. I had no idea what I was about to hear.
On November 21, 2005, I was given my diagnosis – a diagnosis that would change my life forever. I had malignant pleural mesothelioma. Mesothelioma is a cancer in the lining of the lung that is caused by exposure to asbestos, something I was exposed to when I was a child nearly 30 years ago. I felt like I was entering a nightmare and leaving my joyous life with my 3-1/2 month old baby girl behind.
I was given 15 months to live unless I started treating the cancer immediately. It wasn’t just me I was thinking about either but my husband and daughter too. Together, we decided that I needed the best treatment possible. We reached out to our “village” and I knew at this very point that I would need them in ways I never thought possible.
Lily was cared for in South Dakota by my parents and my husband and I left for Boston. On February 2, 2006, I had an extrapleural pneumonectomy, which is a procedure that removes the affected lung and its surrounding tissues. Recovery from the surgery lasted 18 days and I stayed another two months before starting radiation and chemotherapy.
This was a frightening time in my life, but through it all, my “village” continued to grow out of love and support. We met other families during our stay in Boston that were battling the same experience. Meanwhile in South Dakota, my parents’ village was growing too. Lily was getting love from the community, including girls I had babysat when I was young.
I am happy to say that today I am cancer free. I fought the battle and won, but my experience was not as simple as that. I missed out on important milestones with my daughter, milestones that I had waited for during my nine months of pregnancy.
I couldn’t be more grateful to my “village” that stood by my family and me during this difficult time. It’s easy to take things for granted, but when you’re faced with something as horrific as cancer, you need your village to survive. I’m glad I didn’t give up my fight. Every moment with my daughter was worth it all.
Heather Von St James is a 43-year-old wife and mother. Upon her diagnosis of mesothelioma, she vowed to be a source of hope for other patients who found themselves with the same diagnosis. Now, over 6 years later, her story has been helping people all over the globe. She continues her advocacy and awareness work by blogging, speaking and sharing her message of hope and healing with others. Check out her story at the Mesothelioma Cancer Alliance Blog.
FIGHTING MESOTHELIONA WTIH A "VILLAGE" OF SUPPORT
In all the experiences I had gone through in my life, having my daughter was the most miraculous. From the time I found out I was pregnant, my life had gained new meaning. My pregnancy was stress-free and it wasn’t long before I welcomed Lily into the world via C-section on August 4, 2005. My “village”, which included my husband, our parents and our dear friends, came to wish our new family luck. To say our life was pure bliss was an understatement.
Although I loved staying home with Lily, I returned to work when she was just four weeks old. Obviously, I was nervous to leave her. I had no energy and spent my days feeling fatigued and breathless. I reassured myself that these feelings were attributed to the baby blues. Eventually, I decided to see the doctor and get a physical. I had no idea what I was about to hear.
On November 21, 2005, I was given my diagnosis – a diagnosis that would change my life forever. I had malignant pleural mesothelioma. Mesothelioma is a cancer in the lining of the lung that is caused by exposure to asbestos, something I was exposed to when I was a child nearly 30 years ago. I felt like I was entering a nightmare and leaving my joyous life with my 3-1/2 month old baby girl behind.
I was given 15 months to live unless I started treating the cancer immediately. It wasn’t just me I was thinking about either but my husband and daughter too. Together, we decided that I needed the best treatment possible. We reached out to our “village” and I knew at this very point that I would need them in ways I never thought possible.
Lily was cared for in South Dakota by my parents and my husband and I left for Boston. On February 2, 2006, I had an extrapleural pneumonectomy, which is a procedure that removes the affected lung and its surrounding tissues. Recovery from the surgery lasted 18 days and I stayed another two months before starting radiation and chemotherapy.
This was a frightening time in my life, but through it all, my “village” continued to grow out of love and support. We met other families during our stay in Boston that were battling the same experience. Meanwhile in South Dakota, my parents’ village was growing too. Lily was getting love from the community, including girls I had babysat when I was young.
I am happy to say that today I am cancer free. I fought the battle and won, but my experience was not as simple as that. I missed out on important milestones with my daughter, milestones that I had waited for during my nine months of pregnancy.
I couldn’t be more grateful to my “village” that stood by my family and me during this difficult time. It’s easy to take things for granted, but when you’re faced with something as horrific as cancer, you need your village to survive. I’m glad I didn’t give up my fight. Every moment with my daughter was worth it all.
Heather Von St James is a 43-year-old wife and mother. Upon her diagnosis of mesothelioma, she vowed to be a source of hope for other patients who found themselves with the same diagnosis. Now, over 6 years later, her story has been helping people all over the globe. She continues her advocacy and awareness work by blogging, speaking and sharing her message of hope and healing with others. Check out her story at the Mesothelioma Cancer Alliance Blog.
Thursday, July 19, 2012
Getting Frightened
I have this little timeline in my head...that I'll go in for my total hysterectomy/oophrectomy end of September or early October. I'll be done breastfeeding sweet baby boy by then...
But I seem so unprepared. Maybe I just have to set up the surgery date and go for it.
It's been in the future for so long and know it's knocking on my doorstep. Goodness, I'm scared!
But I seem so unprepared. Maybe I just have to set up the surgery date and go for it.
It's been in the future for so long and know it's knocking on my doorstep. Goodness, I'm scared!
Tuesday, May 15, 2012
General Surgeon Appt
I had an appointment with another general surgeon to see if he had more insight into the latest and greatest techniques, ideas, referrals... I feel like I may have wasted my time and money. I basically just heard the same things as my first general surgeon appointment. I should have used that time and money towards another plastic surgeon interview. That's where the aesthetics come into play, where there may be a little different technique used.
I was thinking though, about my plastic surgeon visit in March. I was surprised to see that expanders actually are about half of "implant" material and then on top is a loose bag space where they are filled. (There are probably other types of expanders, but this is the kind I saw.) So you start with some volume from the "implant" material and slowly fill each visit to expand until the desired size. I previously thought the expander was just an empty plastic bag of sorts. There is a metal port at the top of the empty bag part where the physician can push the needle in to fill the bag. He finds that port with a magnet, since the expander port can't be seen under the breast tissue.
I believe I remember reading from several people that when they switch the filled expander for the implant, the expander looked fuller than the resulting implant. Something to remember...
I was thinking though, about my plastic surgeon visit in March. I was surprised to see that expanders actually are about half of "implant" material and then on top is a loose bag space where they are filled. (There are probably other types of expanders, but this is the kind I saw.) So you start with some volume from the "implant" material and slowly fill each visit to expand until the desired size. I previously thought the expander was just an empty plastic bag of sorts. There is a metal port at the top of the empty bag part where the physician can push the needle in to fill the bag. He finds that port with a magnet, since the expander port can't be seen under the breast tissue.
I believe I remember reading from several people that when they switch the filled expander for the implant, the expander looked fuller than the resulting implant. Something to remember...
Wednesday, May 9, 2012
Nipple Areola Tatoos
I can't believe it! It's crazy how I can be so-almost-sure about thinking I'll probably get a nipple-sparing mastectomy...and now I'm back to where I was originally with "I want to make sure as much tissue is gone as possible".
Now I'm looking into the details of nipple reconstruction and areola tatooing. Apparently, some physicians take skin from an area like the inner thigh that is a little darker and will use that tissue for the areola because they think it looks more natural. I am thinking that I don't want scars ALL OVER my body and I'll opt for the nipple tatoo.
I found a helpful process in pictures on the site tatooednipples.com. I didn't realize that the tatoo "artist" would place a stencil over your areola region and draw a circle boundary and then begin the tatoo. They will give you a local anesthetic, or if you don't have feeling in your breast, they won't worry about that. Apparently the whole process can take as little as 30 minutes a side!
Now I'm looking into the details of nipple reconstruction and areola tatooing. Apparently, some physicians take skin from an area like the inner thigh that is a little darker and will use that tissue for the areola because they think it looks more natural. I am thinking that I don't want scars ALL OVER my body and I'll opt for the nipple tatoo.
I found a helpful process in pictures on the site tatooednipples.com. I didn't realize that the tatoo "artist" would place a stencil over your areola region and draw a circle boundary and then begin the tatoo. They will give you a local anesthetic, or if you don't have feeling in your breast, they won't worry about that. Apparently the whole process can take as little as 30 minutes a side!
Measuring Areola Diameter
 
Tattoo in Progress
|  Areola Tattoo Half Done |
I am worried that the nipple tatoo artist won't do a "natural" job. How do you determine who is the best nipple tatoo artist in the city? Here is some guidance from tatooednipples.com:
Types of Artists
Finding an areola pigmentation specialist is sometimes daunting for women trying to complete their breast reconstruction after mastectomy. Not all plastic surgeons offer this service; women are often left on their own while trying to find an experienced specialist. This is especially true for those who have delayed this final step in the process.
Part of the hesitation stems from confusion and misperceptions about the Goth culture at tattoo parlors. It is, however, not surprising that some tattoo parlor artists are highly skilled in 3-D techniques and do include areola tattooing in their services.
The burgeoning trend, however, in areola pigmentation is with permanent cosmetics professionals. These artists have been providing paramedical tattooing for decades and now seem to be cornering the market in providing areola tattooing.
Here are the types of artists and settings where areola pigmentation services are provided:
Plastic Surgeons: Some plastic surgeons will provide areola pigmentation as an office procedure. More often, however, they will have a staff member trained in the procedure. Surgeons also may bring in consulting specialists, as needed, or will provide referrals to a permanent cosmetics professional.
Permanent Cosmetics Professionals: Permanent make-up professionals are becoming the main go-to source for areola tattooing. The industry has embraced this need with a focus on education and compassion. Permanent make-up artists have been providing scar camouflage services for decades. It was a natural progression that this industry would provide areola pigmentation. Plastic surgeons often call upon permanent cosmetics professionals to provide areola tattoos, either in their offices or in the artist’s private facility.
Tattoo Parlor Artists: These traditional tattoo artists are highly skilled in all aspects of 3-D techniques. Their skilled artistry is certainly a baseline for areola tattooing. Many are well known for their excellent work and have opened their hearts and shops to women for these services. Misperceptions about the Goth culture in tattoo parlors should not sway you from finding the best artist in your area.
Tattoo Basics
During a permanent tattoo procedure pigment is implanted into the dermal layer of the skin by using tiny needles. The dermal skin layer is the middle layer between the epidermis (top layer) and hypodermis.
During a nipple tattoo here is what to expect:
- Measurements will be taken (while standing) to determine the position and size of the nipple. (A 4-centimeter circle is the average size.)
- The artist will first draw the tattoo shape on your body so that you can visualize and approve the placement and size. Adjustments can easily be made at this point.
- You will then recline on the table while the artist begins his or her work.
- The artist will numb the area with topical anesthetic cream.
- Pigments will be applied into the dermis using an electronic handheld device that directs tiny needles into the skin. Connected to a digital console unit equipped with a microprocessor, the device enhances precision and needle placement and minimizes trauma to the skin.
- If both sides are being done, the artist may switch back and forth as different pigment colors and brushes are used for various elements of the design.
- As the procedure progresses, very small amounts of blood may ooze from the skin. The artist will dab the skin when needed.
- The procedure will take 45 to 60 minutes per side to complete.
- Upon completion, the artist will place gauze bandages over the tattoos.
- The artist will review and provide printed post-procedure care instructions.
- The results will be darker at first, and the color will fade as the skin heals. It is common that a color touch-up is needed several weeks after the initial procedure. Color touch-ups may also be needed every few years.
- (http://tattooednipples.com/tattoo-tutorial/tattoo-basics/)
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