Single vs. Double | Contralateral Prophylactic Mastectomy (CPM)

When my surgeon told me that I had triple negative breast cancer, she indicated that because of the aggressiveness of my disease, but mostly because of the size and location of my tumor, I would probably need a mastectomy on that side.  (A lumpectomy would have left me far too disfigured to be easily corrected by a plastic surgeon.) The words were hardly out of her mouth before I asked if a double mastectomy would be an overreaction.  She assured me that it wasn’t an overreaction, though a contralateral prophylactic mastectomy– a mastectomy of the other side to prevent breast cancer– was not shown to increase my overall survival. (If I were to have had a BRCA mutation like Angelina Jolie, however, this would not have been the case. The genetic mutation in those ladies makes their risk of a new cancer in the other breast very high.)

I heard her words– it was a major surgery not without risk, and it would not make me live any longer.  I understand survival numbers and statistical significance, I know how to make evidence based decisions.  Yet the decision that I made was not evidence based. I would think just realizing that would upset me, but I know that I didn’t make an uninformed or hasty decision.

A recent publication in the Journal of the National Cancer Institute reiterates a lack of survival benefit associated with contralateral prohpylactic mastectomy (CPM), blaming a perceived benefit as the reason CPM rates have increased substantially– that women don’t understand they won’t live longer and so choose CPM. This has sparked a lot of discussion, both in the scientific community and mainstream media.  How could an intelligent woman understand that it won’t lengthen her life and still choose to have a healthy breast removed?

I remember laying on the procedure table, waiting for the bleeding to stop after my second biopsy (it turned out to be a rather bloody affair) and talking to my surgeon about my future surgery.  She told me that a CPM wouldn’t increase my survival. She may have even asked why I wanted to have a double mastectomy.  At that point, I hadn’t done any research, looked at any pictures, even really discussed it with anyone. Almost instinctively, I told her that if I were to survive this cancer, I still had a lot of years left to live.  I didn’t want to spend those years worrying about my “healthy” breast– the mammograms, the MRIs, the anxiety.  Reconstruction after a single mastectomy usually includes some sort of lift and possible augmentation on the healthy side to match the reconstructed side, but I knew that I’d likely be happier with the cosmetic results from a double mastectomy, too. She assured me that those were valid concerns, but I had plenty of time to think and consider my options.  Choosing CPM is not without a downside.  Mainly, the loss of sensation is a big deal.  I still have some nerve issues in my healthy breast that causes me a fair bit of irritation (think of that tingly feeling when your foot is just starting to fall asleep) when I wear a seatbelt or a bra.  Good thing my reconstructed breasts don’t require one of those pesky things!

With all the talk about this study, I have caught myself wondering if I made the right choice. Would I have been happier to still have one natural breast? It turns out that sometimes even a scientist has to abandon evidence based decision making.  I used more emotion than data in choosing my surgery, but I am convinced that I made the right decision for me.   I know it won’t get me any more days at the pool with my kiddos, but I like knowing that those pool days will be free of worry about an upcoming mammogram or the self-consciousness that my breasts don’t match.  We women have enough to worry about in a bathing suit as it is!

CPM isn’t the right decision for all women, and in fact, may not be the decision I’d make if I’d been diagnosed in my seventies instead of my thirties. There may be women who don’t fully understand the survival benefit (or lack thereof) of CPM, but I don’t think that it’s fair to suggest that all women choosing that option were ill-informed or made an “almost primal” decision to offer up a healthy breast as some sort of maternal sacrifice for our family.  While I know that it did not increase the length of my life,  I feel certain that my choice of CPM drastically increased the quality of my life.

Sharing a Story with Angelina Jolie

Photography by Annie Liebovitz for Vogue

Somehow I never thought I’d be writing a post about Angelina Jolie.  And while I loved how tough her character was in Salt, I’ve never imagined lauding her in a public forum for her toughness.  Last night I tried several times to start a post about my surgery—trying to figure out how to share the process.  It’s a strange thing to share with a big audience.  I’d type, I’d delete.  I’d type again, let myself get distracted, then I finally gave up and headed to bed.

I woke up this morning to emails from two friends who’d already seen the news—the first complimenting me on being ahead of the trend yet again.  The second, from a friend who walked this road before me, commenting that we have been preempted as the cool faces of breast cancer. Reading Angelina Jolie’s op-ed piece in the Times about her decision to have a double mastectomy and reconstruction left me in unfamiliar territory– I’m truly impressed by this celebrity.  Granted, I’m sure someone helped her find the eloquent words to share her story.  But still,it’s her story, and it’s not an easy story to share.

My story is not the same as hers.  I did undergo the same genetic testing, not because of a strong family history, but because I was diagnosed with aggressive cancer as a young woman, and I was so thankful for the negative result.  And the story of my surgery is not identical to hers, either.  My trip to the surgeon was not by my own choice, it was a medical necessity.  But while surgery was necessary, the decision to have a bilateral mastectomy was mine.  It is not a decision to be taken lightly, but one that I never questioned.  Last night I was searching for the words to explain what I went through without being graphic and without sugar coating it, either.  It seemed important to share that first and foremost, reconstruction following a mastectomy is a process.  The process is started during the original mastectomy surgery, but it’s not complete for months, after weekly or biweekly appointments with a plastic surgeon and between one and three more surgical procedures.  In her piece, Angelina Jolie (what do I call her? Angelina seems too familiar, Ms. Jolie sounds ridiculous.  AJ, maybe?) also debunked one big fear from years past.  This surgery does not leave one deformed, it doesn’t steal a woman’s beauty or femininity.  A talented surgeon can achieve great results but it takes time and patience.

I talked before about the fact that I did the genetic testing early on after my diagnosis.  AJ mentioned the great cost of this testing and the fact that cost makes it inaccessible to many.  While I don’t think that it’s fair for companies to make obscene profits at the cost of someone who is sick, I can appreciate the work that sequencing those genes requires, not to mention the cost that went into the discovery of the gene and the development of a test that can be run on nothing more than some mouthwash that’s been swished around a patient’s mouth for a minute or two.  But what AJ failed to mention is that not everyone needs this test.  In fact, not everyone whose mother or aunt or sister has died of breast or ovarian cancer needs this test.  Many large cancer centers have genetic counselors on staff who spend hours discussing cancer risk and the implications of a positive test with patients before testing will occur.  Some early fears of the implications of a positive BRCA test have dissipated (inability to get a job or insurance chief among them), but the decision to even be tested is not one to be taken lightly. And in the case of those who are truly at a high risk of being BRCA positive, many insurance companies will now cover the test.

Last night, as I struggled to write this post, I would have never imagined that Angelina Jolie would help me write it today.  But I think given a difficult circumstance, she made a good decision for the right reasons, and I applaud her boldness to share it.  Even as one who will never face the same circumstance, I appreciate that she had the toughness to share her story, and that she helped me share mine.