Tuesday, February 28, 2012

It is a gamble. . .

I had a follow up genetic counseling session today with the counselor and an oncologist. It proved to be very helpful as I had a lot of questions. The more I read and research, the more I feel like I have a handle on my true risks. It seems the initial number given to me applies to BRCA 1 and BRCA 2 carriers combined but since I am BRCA 2 my personal risk for ovarian cancer is about 10%. To top that off, I have no one documented in my family history with ovarian cancer (that we know of). So, that makes me question why a Dr. would even recommend that I have my ovaries removed? Would you remove your leg if you had a 10% chance of getting bone cancer in your leg?!?If you had a 10% chance of winning the lottery would you still play if the price of a ticket were $1000? Probably not. It is all gamble at this point. I get that a lot of women do it for different reasons, if I had seen someone in my family struggle through ovarianc cancer it’ll probably be more of a concern to me. I just feel that if I know my risks are not that high and also a surgical menopause can change the quality of my life and put me at a small increased risk for bone issues and cardiovascular disease then surgical options for my ovaries are not something I am interested in at this time.

The other thing that was mentioned by the Dr. is that my risk of dying from breast cancer is very low. My risk for getting breast cancer is high, but with the surveillance technology available, if I do get cancer it would be caught super early as I’d get monitored every 6 months. I am not going to lie, for a split second I questioned myself and my decision to get a PBM (prophylactic bilateral mastectomy) because what the Dr. said is so true. Most women survive breast cancer and if it is caught early then why let it worry me so much. But, then we got to talking about my mom’s history and we reviewed my file. My mom had her first lump biopsied when she was my age. And for twenty years she has struggled through the stress and anxiety that go along with getting mammograms, biopsies, and waiting for results. In fact, she dreaded it so much she actually missed one year. Most women (even without a genetic risk) dread their yearly mammograms. I am not sure for the next twenty years that I want to be going through that, with finding lumps, having them biopsied, having them removed, and waiting by the phone even if I never got cancer. There is also something to be said for the stress it causes on your children. I do not remember being super worried about my mom through all of her issues but I am not a typical "worrier," I am not able to predict how my children would react to my stress through these issues, though I know for a fact it would stress Dan out immensely. I know my mom was terrified every time the phone rang to hear her results. Though I haven't processed this all the same way my mom has, I can see that being stressful for anyone. My thoughts were, if I most likely will eventually get cancer and at that time, would opt for the mastectomy anyway, why not do it now and save myself the stress and anxiety (not to mention money for the surveillance as my MRI was 300 out of pocket) and go for it now while I am healthy. So, again, thinking logically and rationally, I think I am ok with my decision to move forward.

As far as the ovaries, I’ve decided that I am in absolutely NO rush to take those bad boys out. Do I want more kids? Most likely no,  but I don’t want to be in menopause at age 31 or even 35 or even 40. I am ok with surveillance for at least 10 years. Easier said than done, right? I think I’ll be able to handle the stress of screenings as the ovarian cancer risk is not that high in general and certainly not high in for a person between ages 30-40. I’ll be making an appointment for this summer to begin my surveillance efforts and go from there.

Next stop....the plastic surgeon on Thursday.


  1. Hi have definitely laid it out in front of you are looking logically. Regarding the ovaries (I'm BRCA 1) I either read or I was told by my counselor that if I only took the breast it didn't lower my ovarian risk obviously but it only dropped my BC risk from 87%-50/40%. Were you told that. I know the BRCA 1 carries a little more risk/percentages than #2 but maybe in the details there are more specific differences. I too dread the Oophorectomy but I'm hoping that I will be able to go on a very low dose of HRT but having not talked with an Endo or a Gynoc I'm not sure since BRCA feeds of of hormones?!! Ugh "gamble"it is trying to make the right decisions that effect us forever :-/. Regarding the Surveilance I too know that I would never survive that. I'm a Leukemia survivor and the toll it took on me, my marriage and family..I have to Surveilance that every year still I just couldn't throw BC and OC into the mix. I go to the plastic surgeon tomorrow. I'm anxious to get that appt behind me and see what ALL answers he has for me! Good luck tomorrow and make sure you post and I will too :)

    1. Hey-shoot me an email and we can chat more. I am BRCA 2 and it is simply not as associated with ovarian cancer as BRCA 1 is. That has affected how I handle things. I'd be happy to compared and see what we have been told as far as our risks. I just met with them yesterday so it is fresh on my mind.


  2. Hey Pink 1 I am (for whatever reason) not able to post comments on your Blog and wanted to know how your appointment went. I'ld like to chat so we can compare what we were told. Email me if you see this: or post your email and I'll email you. :o)