Peggy Orenstein is brave enough to discuss the controversies in CancerLand, the ones we bloggers all tiptoe around because we don't want any feelings hurt. Her latest article in the New York Times has once again stirred people up and there have been angry and defensive responses.
But I'm going to stick up for her.
Basically, Peggy discusses a study published in the Journal of Clinical Oncology showing a massive jump in the number of women getting a prophylactic bilateral mastectomy among women with very low risk of recurrent disease, such as those with DCIS and without the BRCA gene. The numbers have also jumped in women with early stage invasive disease. This spike has happened despite numerous studies that show that there is no survival benefit for doing this type of surgery.
Peggy's article questions why we have regressed. The pendulum has swung from the radical Halsted Mastectomy which was highly disfiguring, to lumpectomy (breast conservation) as the desired surgery, and swung back to bilateral mastectomy, without the medical data that says this swingback trend is necessary. She concludes that overestimation of risk and potential regret are the motivating reasons that women have for choosing non-diseased breast removed and suggests that doctors reevaluate their treatment.
Unfortunately, the backlash to Peggy's questions have been fast and fierce and women believe they must defend their decision to do a double-mastectomy. But I believe the article is misunderstood. Peggy is not questioning a woman and her individual choice. She is questioning the medical community that has allowed this choice to become commonplace despite what medical data show.
Women reading this should not believe that questioning a medical approach is the same as questioning a human heart.
I can't say that enough. There is a difference between medical norms and data and the emotional life of women facing a crisis, and somewhere in between those two things is where the problem must be solved.
Choosing a bilateral mastectomy when cancer is only in one breast is completely understandable to me, and I think to Peggy. We've both been there, although she remains early stage and I am metastatic. We both chose to save one of our breasts but that doesn't mean we don't understand the emotions of cancer, or think negatively of those who made a different decision.
My choice not to remove my healthy breast was no less emotional than anybody else's. I didn't want to lose my breasts, pure and simple. I wanted sensation - I wanted to feel my future grandchild's head against my chest. I had test after test hoping to save my cancerous side, yearning for a lumpectomy. When it was impossible, then I didn't want to lose two. It was as simple as that. My decision was based on emotions, same as anybody else's. Not statistics, not logic or reason. So I get it.
Peggy mentions a cockroach in her article that brought back a memory: when I was a child, my mother was doing laundry in the garage. She got an insect on her, which freaked her out. She began screaming "Get it off, get it off!" so loudly the neighbors came running. To my great embarrassment, she whirled around and ripped her shirt off, and ended up standing in the garage with only her white bra and skirt on. Well, that is exactly what you feel when you hear "you have cancer." Something terrorizing is on you, and all you want is to rip it out and neighbors be damned.
Enter the doctor.
What has always puzzled me is why doctors so readily agree to cut off a healthy body part. Not only agree, but sometimes encourage it. I was adamant that I wanted breast conserving surgery to whatever extent possible. Sadly, it turned that I had multicentric disease and needed a right-sided mastectomy. I was able to keep my left. My right has been gone 5 years now, bless her heart. I miss her.
However, when I saw my plastic surgeon, he seemed shocked that I was going to keep my healthy breast, and suggested I consider removing it for the ability to get a more even, "beautiful, " reconstruction. The shock he expressed went both ways - I couldn't believe he thought that I should amputate a perfectly healthy body part to comply with his idea of beauty.
It is also another double-standard. When a man gets testicular cancer on one side, he does not cut all his junk off "just in case." Cancer doesn't jump from ball to ball, nor does it jump from boob to boob. No man I've heard of ever makes the choice to remove them both. Yet, our poor girls, when one gets sick they often both have to go.
Why is this? How did this come about, and why have doctors so readily agreed to do what is essentially unnecessary surgery to remove a healthy body part? Would they do it if a man requested it? Is it because they, like my plastic surgeon, believe that it leads to beauty? Is this a form of paternalism? Do they think we will argue and so they just automatically give in without making their case? (That is, after all, the excuse they use for over-prescribing antibiotics, which is now fueling uncontrollable diseases, one of which nearly killed me.) Or do they not understand the risks themselves?
Of all people, doctors should know that breasts are not unnecessary warts on our bodies. They are part of our physique, posture, and bodily structure and while they are designed for feeding babies, once that job is done it does not mean they can be lopped off like too-long fingernails.
Physicians often don't tell you about the problems that are possible after mastectomy. I have suffered greatly from the mastectomy and issues with recon. I never had the infections that many get, but I have had difficulty with movement that continues to this day, nearly five years after the surgery. My chest and shoulder has been painful since the reconstruction; I've had frozen shoulder in it 3 times now. Cortisone shots have kept me functioning but I have permanently lost range of motion in my right arm, which means my baseball career is definitely over. The implant feels unnatural and painful. I have never been able to go back to sleeping on my stomach, which used to be my favorite position. My chest muscles are weak, as are my back muscles, and worst of all - for five freaking years I have had a maddening itch somewhere in there that I cannot scratch because it's completely numb. Phantom itching, it's called. I am so grateful I only removed my diseased breast - I can't imagine years of not being able to lift both arms, having itching on both sides, along with everything else that has happened to me.
Of course, I am me. I don't represent everybody and many do not have these issues. The point is, nobody ever told me that the above listed problems could occur, and in my years of blog writing and discussing this with other cancer patients, these problems are neither uncommon, nor are they brought up in doctor's offices when mastectomies are discussed. Many women don't even understand their chests will be forever numb. And, while my insurance has covered millions of dollars worth of treatments for me over the course of my metastatic disease (and I am very, very grateful) - it doesn't cover physical therapy which I do need. I'm on my own with that.
Cancer that is in the breast can't kill you, we know this. Doctors take it out of the breast or take off the breast for the purpose of preventing cancer from spreading to an area where it can kill you, such as lung, liver, brain or bone. Removing a breast that doesn't have cancer doesn't prevent spread.
If there is no cancer in the breast, why are doctors removing it? Don't they have to live by the "do no harm" ethos? I can attest that the possibility of harm exists.
There are, of course, cases in which it makes good medical and physical sense to remove the contralateral breast. Lobular cancer tends to relapse to the other side, and the BRCA gene means both must go.
I also do not discount symmetry as a reason for wanting a bilateral mastectomy. Women are hopefully going to be living a long time with this new chest, and so if evenness is more important than sensation, than that is a valid choice. Many women have problem breasts - too big, pendulous, uncomfortable and do not mind their removal. Psychological and comfort reasons can important too. There are women with anxiety disorders who will not do well having mammograms frequently post-breast cancer. In cases like that, removing the breast to spare them that anxiety is reasonable.
It's just that the above reasons don't explain the sheer numbers of women who are doing "prophy" bilaterals now for very early stage cancer. Talking to woman after woman, as I do, it's like they have never even considered the idea of leaving their healthy breast alone. It's an automatic - disease in one breast means remove them both. Their doctors don't seem to have even brought it up.
Sure, there is always that frightening story about the rare woman who had no evidence of cancer in one of her breasts, chose to do a bilateral and behold, in the path report cancer was found in the non-cancer breast. That is used as a warning to not take chances. That is certainly a nerve-wracking story but not necessarily one that a patient should base her own decision for breast amputation upon. It's a story a doctor should be able to put into perspective, and if necessary, use tests to calm those fears.
Yes, cancer is sneaky, as evidenced by my own early stage, node-negative cancer ending up in my liver. But in medicine, you can't go by scary stories, you have to go by data.
I can't help but feel that the pink gang has helped fuel the misunderstanding of the risks involved in having cancer return to the opposite side. Most women questioned in the study over-estimated their risks by quite a bit. We are not aware, we are hyper-aware, to the point of being seriously misinformed. The cynic in me says that you can't have a pink army collecting money for you if there is no driving fear that causes one to hold out the collection plate.
The truth is, there are many cases in which a double is not necessary. Medicine should not put that on patients alone to decide. We aren't qualified. We are afraid. We probably have never read a medical text in our lives, we don't understand the statistics or the Cochrane-Armitage Scale or what Cox Proportional Hazards are. We are going to die and leave our babies! We have way too much to learn and not enough time to learn it. It is only natural to say, "take them off" and believe it's the safest thing. We can hope that we will get "perky new boobs" like everybody tells us. Nobody can blame a woman for that, or any of the other reasons she may choose to do a bilateral
Every women who did a bilateral did it for reasons that made sense to her, and what's done is done. There is no point in going back and revisiting it. We all just do the best we can for the reasons we understood at the time.
But this doesn't explain why doctors are doing so many. They know the risks with mastectomy and recon, they know the problems, they understand the data - or they should.
We should not question a woman's private decision but it is appropriate to question the medical establishment and find out why they have allowed this surgery to become the norm when it is medically unnecessary. And that is all Peggy was doing.
Going forward in the future, for those newly diagnosed, I think it is incumbent on doctors - it is their sacred responsibility - to make sure a woman understands their individual risks of contralateral breast cancer and overall survival, balance their desire for symmetry in reconstruction with the medical risks, and yes, include their mental state including fear and worry. Then help her make an informed decision, as unemotionally as possible, knowing a womans first thought is often "get it off!" This may take some time, and a doctor may have to sit with her, hold her hand, pull out the paperwork and explain the odds. Maybe even return a phone call or two. And, remind a woman that a prophy can always be done at a later date - if anxiety gets to her, if her need for symmetry is not met after reconstruction or for any other reason - that is established law. But once it is done, there is no going back.
I'm not sure what the correct answer to balance these needs are, but removing a healthy body part doesn't seem like the best way to start. To me, it seems like a last resort.
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