Thursday, November 15, 2012


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 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.


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 decorating Gingerbread homes together and going to see the Christmas lights at Temple Square.


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!

Friday, November 9, 2012


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
#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" 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
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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.


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]
The trial was ended early in 2002 when the researchers found that the subjects with estrogen plus progestin had a greater incidence of coronary heart disease, breast cancer, stroke, and pulmonary embolism than the subjects receiving placebo.[2] Hormone replacement therapy use declined in the U.S. and around the world, followed by a decline in breast cancer.[3]

 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]
A secondary endpoint was postmenopausal weight gain. Long term daily supplementation of calcium with vitamin D resulted in a small prevention of weight gain.[6]

 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.


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!

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.