Friday, February 10, 2012


What if I get a mastectomy and years later I still get cancer?
* What if? What if? What if I get hit by a bus when I'm crossing the street? I am choosing to do what I can to reduce my risk of cancer. Yes, breast cancer is 99% curable, but I don't want to deal with the chemo and radiation, lymphedema and side-effects of other cancer drugs. I want to prevent cancer. Sometimes it seems absurd that I'm considering this procedure, but it's the most effective way to reduce my risk.
So, what if? What if? I'll be sure to wear a yellow reflectable vest whenever I leave home too... to avoid the busses.
For some women is this a justified "excuse" to get implants?
*Is that even a nice question to ask? Obviously these perky babies would come with a 5" incision across each one or scars somewhere, maybe a tatooed areola and recreated nipple, all without sensation and feeling... but is there a chance that all of these undesirables are somehow balanced with the opportunity of full, perky girls?
This is a question I have to ask myself. I know that I wouldn't be having a conversation with mself about implants if they didn't come with the promise of being cancer-free-almost. Period.
I don't look forward to scars and visible implant ripples under my skin, and more than that I don't look forward to upkeep...future implant swap surgeries and touch-up procedures.
If I wasn't BRCA2 positive and dealing with my risks, would I be grateful each day for my "working boobs", that will sag and shrink and lose their perky beauty of former days?

What if there is a less invasive procedure 5 years from now, and I jumped the gun?
*Then, what if I got cancer within those 5 years? Silly to keep asking these what if questions. But that doesn't mean they are whirling around up there in my head. Write them down, and they sort of disappear.


My sisters do not have the BRCA2 mutation...and I worry that they don't think about the fact that they still have a strong family history of breast cancer. I think they look at my positive BRCA outcome and pity my genetics. Perhaps I am the lucky one, though. The positive test pushes me to stare at my percentages of developing breast cancer... and motivates me to do something about it. Being BRCA positive makes it easier for my insurance to cover my upcoming procedures. I know that they are not as concerned as I am about the possibility of developing ovarian and breast cancer. If they choose not to go the same route I do to prevent cancer, they need to be ultra diligent in screening.

Oncological Gynecologist Visit

Dan was great to meet me downtown at Dr. Soisson's office. I thought it was important for him to speak with the physician so he could hear the risks and options from an authority on the subject. Dr. Soisson has a lot of experience with BRCA2 patients and it seems to make sense to have an onc gyn do the hysterectomy/oophrectomy. When he gets his scope in there, with his knowing eye, he can take a look for any cancer in my peritoneal cavity.

He said they would make a small incision below my bellybutton and two below and to the sides of my abdomen (in a triangle). They feed a scope through one hole and instruments through the other holes to work on removing my girl parts. Everything exits through my vagina. I asked about the DaVinci method and he explained that this uses a robot, but they just use their own hands to move the instruments. He seemed very confident in his abilities. He's done this for a while... that reassures me.

Dr. Soisson was careful to explain the risks of a BRCA2 carrier and the options that were available from surveillance to procedures. He explained that my risk of ovarian cancer was 15% higher than those without BRCA2. (I thought it was higher, I read that the normal population was at a 1.5% risk and I am at a 44% risk.) He said that my risk of uterine/cervical cancer was much lower and I could opt for the simpler procedure of just getting my tubes and ovaries removed. He said the possibility of infection is less and the recovery is only about 3 days vs with a total hyst/ooph, there is a higher possibility of infection and the recovery is about 1 to 2 weeks.

I asked him if he would perform a peritoneal wash. He said that first of all, they're expensive and that secondly, they can give false positives. He said if the wash showed positive, then he would cut me open from my xyphoid and take an extensive look inside. If it was a false positive, then I'm left with a bill and a scar. He didn't have much faith in them.

He reminded us that there is just no good surveillance for ovarian cancer and that this is an effective way to cut your risk of ovarian cancer. He said that after the procedure, I would still come in for a femal check-up, but more to monitor other things and make sure I am taking care of myself in other ways, like getting a colonoscopy when the time comes, but obviously, they won't be doing PAP smears.

We talked about the side-effects of no ovaries. Mood shifts, libido, hot flashes... Dr. Soisson said that after the surgery we can better assess the need for hormone replacement therapy. He said that hot flashes normally last one year. He said I may be able to tough it out with no HRT. He said that if I had no uterus, I would probably be on estrogen (premarin) and if I had kept my uterus, then I would be on estrogen and progesterone (prempro). The progesterone is needed to prevent uterine cancer from the estrogen (I think that's what he said). He cited a study, " The Women's Health Initiative", where women were on these two types of drugs or just on estrogen. Women on estrogen and progesterone (with uterus) had an increase in breast cancer. Their risk of heart attack was higher too. Women only on estrogen did not have a higher increase of breast cancer.

I asked him about Gabapentin for hot flashes. He had no experience with it and didn't seem to be too interested in trying it. I may have to push him on that again after my surgeries. I think I'll send him the study I found on the internet about it.

Dr. Soisson also talked about various ways to proceed with my breast cancer risk. He said that surveillance is very good these days to find cancers and I may wish to consider just keeping up on my mamograms, ultrasounds and MRIs. I pointed out that once cancer is found, you have to go through chemo, radiation, tamoxifan... and not all breast cancers are caught and curable. (Remember..I watched mom go through the routine 3 times.)

It was good to get a timeline. Dr. Soisson thought it was appropriate for me to wait to finish breastfeeding little James before the procedure. He said when I'm ready end of summer/early fall, I just need to give the office a call and schedule. He's about a week out. This helped me piece together a time-line for myself. I also realized that this time of year, January/February, is a slower time for our family and would be a good time next year for my prophylactic mastectomy and start of reconstruction. It would give me time to heal and adjust from the side-effects of no girl parts and the holiday rush would be over. It also gives me time to research surgeons.

Sometimes the scare of cancer shuffles me into such a rush, rush, that I don't know if I can give myself the luxury of breastfeed James, to really research a surgeon. Now that James is born, the reason I've been waiting for the procedures has passed, but breastfeeding gives me a little wiggle room. I could do everything now, or proceed a little more slowly than I had anticipated I would. It's a time/risk game, but I feel pretty comfortable doing it on this time-line.

Friday, February 3, 2012

Just How You Are...

Often some of our best conversations occur while Dan is in the shower and I'm putting on my makeup in the mirror. Over the shower door, Dan explained how sometimes he's apprehensive about my upcoming surgeries. First of all, surgery is a big deal, but despite that... Dan said that he loves everything about me.

Dan is one of those guys that holds onto friendships and memories. He was so cute when we left married housing at the University. He was a bit attached to our life there, as was I. It was a new stage and he likes new adventures, but enjoyed our time together there. A new phase of life.

I think this is sort of the same thing. He said that he even loves my baby parts that helped to create our beautiful children. He thinks my breasts are beautiful. I'm glad to hear that he loves me so much and I feel the same way. It's kind of like when you take a picture of an event to remember it forever, but it's never the same as reliving the experience. It would never be as perfect if you did relive it. I think it's going to be okay. We'll look back, but be grateful for what we have now.