my inbox has been blowing up today with angelina jolie’s announcement (and the British Columbia election, but that’s for another conversation). either it’s been a slow news day or i’m really tuned into all things breast.  if you haven’t heard, angelina announced that she recently had a double mastectomy with reconstruction to lower her chance of getting breast cancer, given that she carries the BRCA-1 gene and watched her mother die of ovarian cancer.

i have a lot to say about this and realize i’m just one lens to for you see this through. i respect her decision and appreciate her being public about it, using her celebrity to educate and do positive things for the world. 

carrying mutations of the BRCA-1 and BRCA-2 genes means that you’re at a higher risk to develop breast and ovarian cancer and at an early age (60% chance of breast cancer, or 5 times more likely than the average woman; 15-40% chance of ovarian cancer).  these are inherited and harmful mutations, and if you inherit them, you’ll likely have family members who have already gone through cancer too.

of course, having the mutation doesn’t mean you’ll get cancer. doctors and researchers don’t understand why the mutation gets activated into cancer in some people but not others (lifestyle? environment? who knows.  the BRCA mutations are important; however, the BRCA cancers account for only 5-10% of all breast cancer cases. meaning, we still don’t know jack about why people get cancer.). but, it’s about risk management. if you’re a mutation carrier, what will help you sleep at night? a prophylactic double mastectomy? an oopherectomy or removal of your ovaries? that’s your choice.
a few things strike me as fascinating about this situation and the commentary today.

• jolie mentions the genetic test costing around $3000.  this is true, if it’s not more expensive.  i’m BRCA-1 and BRCA-2 negative, but the only way i know this is after a fight with my insurance company.  this while i was in shock with my diagnosis, trying to navigate treatment plans (and ps i have good insurance). they didn’t want to cover the expense, even if it could save them money in the long-run. my genetic counselor said given my family history, i had a low chance of carrying the mutation. but when you get breast cancer at age 32, something is wrong. so together, the counselor helped me push the insurance company to cover it.  for me, it informed my surgical decisions; i may have chosen a double mastectomy, if not now then later after breastfeeding. or maybe i would have chosen active surveillance (e.g., frequent mammograms, MRIs, breast exams). but would every woman who is at risk be her own advocate? push the insurance company? have her doctors step in as advocates too? i’m not confident that is the case every time, that the patient is first.
• a large reason the insurance companies don’t cover the test is because it’s expensive.  why is it expensive? here is where the plot thickens. myriad genetics has a patent on the genes BRCA-1 and BRCA-2 (and got a nice bump in their stock today with jolie’s announcement). what??? yes, they hold patents on your genes. everyone carries BRCA-1 and BRCA-2; it’s the mutation that gets a person into trouble. and because they hold patents on the genes, they have a monopoly for the BRCA test so can charge whatever they want.  this june, the US supreme court will be weighing in on a case brought forward by quite a few groups (breast cancer action being an amazing one). these groups are trying to overturn the patent, so that the cost of testing can drop and insurance companies will cover it more readily. the test isn’t complicated and only requires a small bit of saliva or blood. fingers crossed this court decision turns out the right way.
• angelina has been named the most beautiful woman on the planet, the sexiest woman alive, and all other sorts of things reserved for people with those freakishly good looks. a part of female beauty to us is breasts.  there is a rabbit hole to go down in our culture around beauty, objectifying women, objectifying breasts (i have mixed feelings around all the nonprofits and initiatives out there, like save the ta-tas, touch your boobies, etc. it’s like, can’t we just get over it?). so here is this beautiful, sex symbol of a woman making a choice to lop off both breasts for her health.  that’s pretty powerful.
• the other comment she made is that despite these surgeries, she still feels beautiful, sexy, and feminine. she’s not embarrassed.  that’s pretty powerful too.  although i know many women who have gone through these procedures and who feel none of the above, even though they are loved and have a supportive partner.  it’s still a body part that was yours that you no longer have. scars remind you of pain. you have no sensation left in your breasts. it can be hard, if not impossible, to feel beautiful. i don’t want jolie’s remarks to de-legitimize these other feelings women can have post-surgery.
• jolie has 6 children; i’m assuming she’s not having any more biological children (we’re not on a first name basis, so i can’t be sure). but if she did have them, she would not be able to breast feed. no breast tissue, no breast milk.  some women who are BRCA mutation carriers may choose to wait until they have children to have their surgery. what i would hate to see happen is, in a fit of celebrity infatuation, tons of women rush and get genetically tested, find out they are mutation carriers, get their breasts removed, and only realize later they can’t breast feed and could have waited for surgery. the risk profile for BRCA mutation carriers changes after the age of 35. there was a wonderful article in the NY Times magazine in april about breast cancer, wondering if we’re actually overtreating people. i could see the same thing happening here.
• and finally, mastectomies, however far they have come, are not awesome. and like any surgery, they carry significant risk. i don’t want jolie’s comments to be taken out of context. it is a major surgery. you lose an organ. and depending on the procedure, your muscular system is completely reworked. woman with mastectomies are more at risk of shoulder and back injuries. i’m in PT twice a week to get my shoulder to rotate back to where it started.

like i said, i’m just another commentator in the peanut gallery of life with thoughts for you to chew on. i’m glad angelina jolie is sparking so many conversations.

xom