I went to visit my surgeon today, and he mentioned that bi-lateral mastectomies associated with BRCA+ gene mutation was in the news. I didn't know what he meant, so I looked it up and I found this:
http://www.medicalnewstoday.com/articles/200240.php
For women who are BRCA+ (like myself), having a prophylactic, or preventive, mastectomy can reduce their risk for developing breast cancer in the future. For us gene mutants, our risk for developing breast or ovarian cancer is very high compared to the rest of the population. Women with a family history (which I don't have) have begun to be genetically tested for the mutation, but then when they find out their results they're faced with the question of: what do I do now?
In my support group last week we were asked: If you could rewind time and have a prophylactic mastecomy, would you? My answer was a definitive YES! That would have made things extremely easy on me. In one surgery I probably could have had the mastectomy and the reconstruction. I would not have to go through chemo. I would not have to go through radiation. I would not have to deal with the long term side effects of treatment like anxiety, chemo brain, lymphedema, and possible infertility. I would have been done with it and moved on without skipping a beat. Unfortunately, I was never given a warning that this lurked in the future for me. Without a family history, there's not much reason to get BRCA tested. Even if I had the test and came up positive, I'm sure pre-cancer me would never think that something as unimaginable as cancer could possibly happen to me. I would have taken my chances and not elected for the surgery, betting that I'd be just fine.
It's like buying the warranty for your car... you don't need that, what could possibly go wrong?
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Hello there Cristal. I happened upon your blog through posts on YSC. I think it is a bit interesting that it so happens today when this is the topic of your post. I can tell you very much what can go wrong...even after buying the warranty.
ReplyDeleteMy twin sister was diagnosed in May 2007 with stage III Invasive Lobular carcinoma at the age of 35. We had no family history but her oncologist still pushed for BRCA testing. We both tested positive for the BRCA1 mutation.My Genetic specialist had me referred to several oncologist's that all said yes, have bi-lateral prophylactic mastectomies...oh and have that last ovary you still have removed as well.So in November 2007 that is what I did. I started delayed reconstruction in June 2008 and on October 23rd 2008 I was diagnosed with metistatic carcinoma believed to be of breast origin... a day after having my expanders swapped for implants. My plastic surgeon removed a 5cm node high in the left axilla chain but just thought it was enlarged from the surgery and expansion process. Nope it was cancer. I did six months of chemo and had 28 radiation treatments. I ask my oncologist how? all the time and we go back and forth as on this.He thinks that maybe it was just always in my nodes and never in my breast. Lobular tends to follow different paths than the other types of BC and although we can't say for sure mine was lobular since it wasn't a breast tumor, it shows characteristics of ILC and since my twin had ILC the assumption is mine was as well.
I wish I could share that having PBM's saved me from having more surgery and pain as well but since I had to have radiation my left implant was damaged and I had severe capillary contraction and had to have my implants removed and I am currently waiting to have stage 2 of DIEP/TRAM reconstruction.
I learned that while I think I am in control...sometimes there is a different plan. Not sure what the purpose in this plan is but I am learning a bit more every day. Even if it is just to provide research and insight for my girls.
Cathy
I may have already shared this, but since it is relevant to the post. I have a good friend that has a strong family history, like unnatural strong. She and her sister are both faced with the decision you are talking about. Melissa on one hand, is eager and wants to (hurry up and) have kids so that she can have the double performed. Her sister on the contrary, almost completely shuts down when the topic is brought up, won’t acknowledge it, and has stated on many occasions that IF she is found to have cancer, she will deal with it then. I would think that I would feel the same way as you, with that much stacked against me, do whatever I could to get rid of it… then again, I’m not out having a prophylactic prostatectomy though so….
ReplyDeleteThanks for this post, and the response to my question on the YSC board. I appreciate your insight. :)
ReplyDeleteHi Cristle!
ReplyDeleteThank you for posting such an important topic. It really is thought provoking, and leads to great discussions. More information needs to be circulated, and you've started the process. I work with Navigating Cancer, a free website for the cancer community.
www.navigatingcancer.com
I would love to include your thoughts in our discussions. Please contact me when you have a moment. Thanks! Becky
becky@navigatingcancer.com