Tuesday, May 14, 2013

Prophylactic Double Mastectomy and Angelina Jolie

Angelina Jolie is not the first, nor will she be the last woman to have a double mastectomy to reduce breast cancer risk.  Giuliana Rancic did the same after her breast cancer diagnosis a couple of years ago.  She actually did have cancer at that point, but chose to remove all of both breasts to reduce further risk.

I have known that I was extremely high risk for breast cancer since I was in high school.  My grandma died of breast and lung cancer and my mom was diagnosed with breast cancer when I was 13.  She was 44.  My mom survived.  So did my aunt about 10 years later.

Because of the high incidence of breast cancer in our family, my mom had the complete genetic workup which they do for the first person who is tested. She was found to have a BRCA2 mutation (there are many different mutations within the gene).  This is associated with a higher risk for breast and ovarian cancer, just like the BRCA1 mutation that Angelina Jolie has.

So my aunt, my sister, and I all got tested for the specific mutation that my mom has.

My aunt did it first...before my mom even told us about her test and she found that she is also positive.

My sister and I got tested together at a joint doctor's appointment (it's just a blood test).  Waiting for the results was the hard part.  I knew that I would feel terrible if my sister was positive and I was not.  It turns out that we're both positive and in this together, which is comforting - although I still wish she did not have the mutation.

As bad as it may sound, I have always thought that I would get breast cancer, so the result did not shake my world.  It was actually a good thing, because it's a specific tool to get doctors to take my cancer risk seriously.

And they do.

I get a breast MRI once a year.  I even changed health systems within the last two years and they will continue the same plan which is a relief.

In my initial visit with the oncologist, he did discuss prophylactic breast removal.  Yes...prophylactic...like "condoms" because it's for prevention of something.  I have stayed as up to date as possible on breast cancer research so I knew then that some people chose the double mastectomy, but I also knew that it wasn't for me.  My doctor's opinion is that it's an aggressive option that does have benefits, but that it's not the be all end all option and should be a personal choice.

It's not that I don't debate it.  I do.  And I definitely think that my opinion is affected by the fact that my mother and aunt both survived breast cancer.  Angelina Jolie's mother did not.  And I think that is really meaningful.  Breast cancer is a little different in every person and my family members with my mutation had very good outcomes even when the cancer was not found right away.  (My mom was Stage 2, but the worst level within Stage 2).

I will continue to read and research and consider my options.  But for now, I feel that diligent monitoring is the best course of action.  Treatment has come such a long way, so even if I do get breast cancer one day, I believe that I can have it treated successfully too.

Ovaries are a different issue.  It's much more difficult to diagnose Ovarian Cancer so it's most often found at a later stage which causes it to be more deadly.  I probably will have my ovaries removed some time in the near future.  It scares me for sure.  And I need to do research about how ovary removal affects hormones and all of that, but since I am done having children, I think it probably makes sense.

I read on another blog that anyone saying that Jolie's decision is ridiculous or awesome doesn't get it.  This is a personal decision. One she bravely decided to share with the world.  I respect her decision, but more so her talking about it.  I may change my mind, but for now, I am choosing to make a different decision.


  1. I definitely agree that the decision is very personal and different for everyone. I wouldn't want to be put in that situation to make the decision. Thank you for the post of this topic today. I have read so many negative comments about what she decided to have done. Of course it is easier to be judgmental when you are not in the situation. We seen that happen to you last year.
    I hope that you are able to keep away from breast cancer.

  2. I completely respect your decision and fully believe that it is a personal choice. My MIL has the gene and there is a history of breast cancer in the family. It scares me to think that my children (and husband!) could also have the gene, though I am grateful for all the treatment options that exist today.

  3. I have a friend who did a prophylactic mastectomy because her mother died of breast cancer. I supported her then because yes, it is a very personal decision. I have a family history of breast cancer, but only my aunt had it. And she survived, thankfully. I have said when I'm done having children, I want to get a breast reduction, and at that point I may choose to have the mastectomy. That is a decision in the future. I do praise Angelina and Giuliana for being so public. Now if we could just get some of those famous people, aside from Giuliana, to be as open and honest about their IF experience, I'd be super excited!

  4. I wrote about this topic today too - I'm BRCA1 positive. I am planning to have a prophylactic double mastectomy and an oophorectomy sometime before I turn 40. (I'm 33.) It is a very personal decision and every woman facing such an alarming risk should be able to make her decision without criticism or judgement from others. I will personally feel safer without my breasts. But it is NOT an easy decision. I am currently nursing my five-month-old. When my breasts had no function I think it was easier to say "get rid of them". Now my breasts are a source of incredible bonding with my son and I think that will make it more emotionally challenging to part with them when the time comes.

    1. Thanks for sharing! I haven't "met" many other people with a mutation. I agree that after having a child, my breasts are suddenly this whole different thing...it's weird.

  5. First off, thank you for sharing this. Too often, people only hear one story and one outcome and automatically assume it's the right one. But like you said, breast cancer is a complex disease and management/prevention is a personal choice. What works for one person does not always work for others.

    Couple of thoughts based on the comments:
    1) We all have 2 copies of the BRCA1 (and BRCA2) gene. What is being screened for is specific mutations that are linked with increased incidence of developing breast cancer. It's one of my major pet-peeves as a scientist to hear that someone has the gene vs. doesn't. We all have it, it's just a matter of whether one has specific mutations that are linked to disease.

    2) One thing I've been hoping more people would talk about in light of Angeline's Op-Ed is the Myriad patent on screening for the BRCA1 mutation. The truth is, this company is profiting off of people who need to be screened for this mutation. And it is criminal that they are allowed to hold a patent on genes that are found naturally. The fact is, because of this patent, this test is not readily accessible to the general public. And that should anger people enough to put political pressure to finally convince the Supreme Court to nullify it. It's long overdue.

    1. Great points Cristy!

      One thing I didn't realize before getting tested is that there are a whole munch of different mutations on the gene that are associated with cancer. Ours is x...something or other.

      I agree about Myriad too. There needs to be a business model that rewards research, but not at the expense of public health.

  6. I live in a bubble that doesn't include People or TMZ so I hadn't heard about Angelina. Thanks for sharing her story and yours. I still hope you don't get breast cancer.

    1. This one was national news, not just tmz! But thanks, I hope I don't get cancer either! :)

  7. I have been reading your blog for some time and first off am so thrilled for you that your little boy is doing so well. I have two young children ages 8 and 12. I found out in April that I have breast cancer. I have run the gamut of being scared, shocked, sad and hopeful. I just went through bilateral mastectomy and will begin treatment soon. I tested for BRCA because of my young age and family history but my test came back clear.
    Personally, I think choosing to have a prophylactic mastectomy would be a really tough one. The recovery for mine has been challenging. I have said on my blog that I would never wish this disease on anyone. I just feel,fortunate that I have so many friends and family standing by for me and loving me. I don't know why I am commenting now, when I have been lurking for so long. I am sorry that your BRCA test did not give you the results you were hoping for. I support your decision for frequent ultrasounds as they are much less invasive than mammograms. I am figuring out that through this whole madness, the only thing I can count on is love and hope. I see what AJ did as an act of hope for herself and her children, but having recently gone through it myself, it is not for everyone.

  8. I better update! I have totally flipped my perspective in the last few months. Now, the plan is PBM in two years but no oophorectomy until at least age 50. Will write another post soon!