The more complex and high stakes a health care decision is, like with genetic testing and mastectomies, the more difficult it can be to find your way. There are no “right” answers, only guideposts to help you choose a path that is best for you.
Decision-making alone. When my kids went to camp in the fifth grade, they got to experience something called the Solo Hike. Counselors took them up into the woods, to a stretch of path that had only one direction, and sent them out one-by-one, to walk alone in the deep woods. They gained confidence from always knowing that someone else was a reachable distance ahead, and another someone else was hidden from sight, following behind.
That’s what you want when you have the path of cancer treatment – to know someone who has walked the path just ahead of you is there. Who can you ask what it’s like to have a mastectomy? Or whether you should have one or both done? And even if you could ask, would she really tell you, or is it like childbirth, where we know each person will have her own path to walk, and there’s no point in unnecessarily scaring someone with your own traumas?
I suspect Angelina Jolie had to set off on her path alone. I grieve if that was her experience and for everyone else like her who is walking their Solo Hike with no one ahead. Do whatever you can to find that person. It’s incredibly important. Reach out through every network you have – even if it ends up being a friend of a friend. I was lucky enough to have someone. Amy was that person for me. She helped me have realistic expectations about the results, even while giving me hope.
And although she’d had a different procedure, she could actually tell me if there was any chance I’d ever get any feeling back after having my nipples cut off. Because by this point, after my diagnosis and before my surgery, I was bargaining constantly with myself to try to save just one breast.
Losing sight of the big picture. When you are in the fog of barely-contained post-cancer-diagnosis panic, you can only hear certain things. Data research, and statistics become obstacles to understanding. You just want someone to get to the point. But in the static-noise frenzy of it all, sometimes a friend, colleague or physician will say a phrase that nails the issue for you, and you realize, suddenly, what you are struggling to express. For me, it was the fact that I really did not want to, underneath it all, cut off my breasts. I kept making new bargains, like, if the right mammogram is bad, I’ll have them both removed. But then, when it was, I instantly shifted to, if the estrogen/progesterone/HER2 marker are bad, I will. But then when they were, I shifted to if the MRI is bad, then I’ll have them both removed. I became so fixated on mentally bargaining for what I could keep that I almost lost sight of the big picture.
As a doctor, I already knew that mastectomies have not been proven to save lives compared to breast-conserving treatment. But what they do achieve, however, is fewer rounds of repeated treatment, and fewer local recurrences. “Treatment” can be a nasty medical euphemism for anything ranging from more surgical biopsies, to more chemo. A friend of mine, when I was trying to discuss my options, said, in the kindest way possible, “You know, the advantage to having a mastectomy is that I think you need to put this behind you and move on. You found it early, you need to live your life.”
And then later Amy, my Solo Hike leader, pointed out that if you have to have a mastectomy, “The only great thing about reconstruction, is that every time you glance down, you don’t have to think, ugh, I had breast cancer.” Maybe it sounds sardonic and cynical, but I realized almost as soon as she said it, that meant something important to me.
What made these statements resonate for me is that they addressed the bigger picture issues of my life, beyond just survival. There was some kernel of truth about my priorities that they nailed, when I was unable to define it for myself. If you are faced with complex health care decisions, big picture discussions can keep you from being dragged down by the inevitable mental bargaining you’ll be doing.
Underestimating how serious a mastectomy is, and how many surgeries you’ll have. Jolie’s 3-4 months, with repeated surgeries, is a good rough measure. And that’s without cancer, or chemo. I was lucky enough to get my mastectomies and reconstruction done at the same operation, but that meant I spent five and a half hours under anesthesia. There are major trauma victims who spend less time in the OR. I left the OR that night and was discharged by 10am the next morning, somewhat groggy, with drains dangling down my sides from under massive bandages. I was not able to lift my arms for weeks. I had implants that could be expanded in place, but then one blew and deflated.
Later procedures are also more involved than anyone says. My plastic surgeon made my nipple reconstruction sound as simple as getting my ears pierced. I spent one and a half hours in an outpatient OR lying flat with a sterile drape over my face, trying to not move, as she meticulously created nipples out of bland, flat skin. It’s true that it wasn’t a big deal – for her. It’s hard to think of this type of procedure being anything other than minor for surgeons who yank out organs and crack chests. But for me, it was a big deal.
Not remembering to honor your decision. I didn’t get a celebrity approach to mastectomy. The ultimate goal of surgery when you have cancer is to be thorough. I got the big, incision-across-the-middle of the breast approach. Only about 5% of people (including those having preventative mastectomies) are offered nipple-sparing surgery (which was never offered to me). I hated losing my nipples much more than losing my breasts. I asked my wonderful plastic surgeon to save whatever “made sense” and she left me a wisp of nipple along the incision on each side. I was thrilled to have these small pink slivers, especially when feeling began to return. After my nipple reconstruction and tattoos, if nipples were eyes, mine look like they have a flattering sweep of long eyelashes.
I didn’t know I’d end up here, though. The Kaiser Permanente plastics clinic was unfailing in their sincerity while always telling women how lovely they were. Each visit, every time. All the staff. On my first visit, before surgery, I thought it was just kind of sweet, and wondered how a whole clinic could be trained into such a uniform approach. See, I’m not a vain person and mostly forget to wear make-up. But once I started treatment, there were times when I showed up after chemo for a plastics appointment, knowing I looked like a horrifyingly geriatric bald Barbie, no nipples, no pubic hair, with crusting surgical lesions and port bulges and the clinic staff would genuinely say how lovely I looked. I just wanted to weep from their kindness.
It is good to mourn what you lose and to take the time to honor your decision. Sometimes your goals will be very different from those of the people taking care of you and even the people who love you. I chose to have both my breasts cut off. I didn’t have to, and it wasn’t actually a logical, evidence-based decision. I was aware that the health care system had failed me after my years of fake-negative mammograms. I wanted to “move on,” and I wanted to avoid a lifetime of future biopsies and possibly a cancer recurrence, if I could avoid it. Those were my reasons. Was it the right decision?
In the end, my pathology report showed my lymph nodes were wonderfully negative. But I had one invasive tumor in my left breast, along with a second ductal carcinoma-in-situ. And, in my right breast (which had a negative MRI) was a lobular carcinoma-in-situ – a credit card thin distance away from my chest wall.
Although I believe we start with data and move forward, it is our narratives and our insights that guide us. Still, for me, this was ultimately a numbers game in the end: three tumors, two breasts, one very difficult decision.
Jan Gurley is an internal medicine physician who blogs at Doc Gurley.