Sunday, August 3, 2014

The Wrong Approach to Breast Cancer (?)

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.








49 comments:

  1. Absolutely doctors (breast surgeons, plastic surgeons) should better inform patients about the possible complications after mastectomy. I don't remember being informed about the resulting numbness that would be felt for years. I was not told how cold the implants would feel in the winter. Being told those things though would not have changed my mind. Fear was the motivation behind my decision for bilateral mastectomy. I was told that there was a small chance that cancer could occur in my healthy breast. (Not BRACA. I am HER2+) It didn't matter how small the risk, that was all I needed to hear, and my decision was made. It didn't help me in the end. My initial wide-spread DCIS and resulting surgery was not enough to save me from stage IV disease.

    ReplyDelete
    Replies
    1. I'm sorry to hear that. I often wish the fact that I was Stage IV would have been discovered earlier - I suspect I was metastatic from the start. It would have been much better to have kept the breast and not had all the issues I've had since.

      Not one doctor mentioned it to me and when I told my PS after it was over, he just went "huh."

      Delete
  2. I had 15 mammograms in 15 years before a 6cm tumor was found. I chose a bilateral, which surprised my surgeon, who said "why take off healthy tissue - we will find any new cancer."

    Really? This time?

    ReplyDelete
    Replies
    1. Yeah, you are pretty clearly in the "good reason to do it" category. Not that there has to be - I'm glad your doctor discussed it with you anyway.

      Delete
  3. I was like you, Ann, having Her2+ disease, node negative! yet two tumors, one being lobular invasive, and so I had decisions to make. When I learned that lobular breast cancer has a 30% chance of developing in the other breast, I chose to hear "it has a 70% chance of NOT developing in the other breast." That seemed like pretty decent odds for keeping it. I was also treated in a military hospital, where doctors are not paid one dime more if they perform 20 mastectomies a month or two. The surgeon I had told me he saw no valid reason for removing my healthy breast and that women grossly underestimate the loss of their breast(s). He advised to keep it and that I could change my mind at a later date after I could see what living without one breast was like. I am very glad I listened to him despite my emotional reactive response to " GET IT OFF!!" Living with the numbness and muscle spasms, back numbness, deep pain under the implant, and even a herniated muscle through the scar which alarmed everybody 4 years later, requiring a near immediate surgical biopsy, subsequently deemed benign, has convinced me that I made the right decision for me. What most women never talk about is the loss of a nipple and the sexual ramifications of losing a breast. Maybe this is what my surgeon was eluding to, but never quite said it.

    I feel like this fake shape on my chest is like an illegal alien. She presents herself as " real" to a casual onlooker, but in the private places of intimacy, I know her dirty little secret and I don't want her to receive unjust recognition or attention because she is a fake. An intruder. And so it has negatively impacted my sexuality and desire to be sexual. After all, why should anyone else receive pleasure from her if I can't? How is that a win-win? Nobody who has not walked in my shoes could understand.

    Likewise, I have met women for whom sex was a real "issue" prior to breast cancer because they were flat as a pancake and had little to no breasts and always wanted to feel sensual and voluptuousness on their chests. Reconstruction following a BMX was a consolation prize for them and the right choice in their cases. And likewise other women who suffer back pain and terrible teasing for their over-sized bosoms feel like a huge weight is literally lifted off their shoulders by choosing a BMX. I agree that for some women it is the best decision for them. But for sheer fear of recurrence, I would agree that doctors carry the responsibility of steering women to all of the facts and maybe even a delayed choice before proceeding with something so drastic. Once a breast is gone it is gone forever.

    With new insurance options in place now, and tighter rules on coverages, I can't help but think that insurance companies may stop covering removal of healthy body parts for symmetry reasons. Let's face it, medicine is a business, and unfortunately I am sure some doctors may be seeking a double deposit when leading women to the decision for BMX. I'd hate to think that may be the case, but again, I can't help but wonder, seeing as my military doctor was so surprisingly different from civilian surgeons who overwhelmingly recommend the opposite.

    I have had annual MRI and mammogram of my other breast and at the 4 1/2 year point I had a biopsy of suspicious area. Still, I am glad I kept her. After all, 80%+ of all biopsies are benign. Those are odds I can live with and with turning fifty this year I need all the sexual mojo I can possibly hold on to and for me, that is in my one and only real breast. Keepin' it real here! :)

    ReplyDelete
    Replies
    1. We agree on so much here. And, I have all the issues with pain and problems as well. I really did want to keep sensation.

      I think the Women's Cancer Rights Act will prevent any doctor from denying a woman a prophy if she wants one for symmetry reasons. That is listed as one of the things we are legally entitled to. But I think it should be done down the road when a woman knows what she could be facing. And, I've seen some beautiful recons with just a one-sided mx. Just not mine. :)

      Delete
    2. The key word here is prophylactic and aside from being BRCA+ or lobular! I could see insurance companies finding a loophole here. There is little evidence to support the notion that this is preventing something of eminent danger.

      Delete
  4. I, too, chose to keep the healthy breast. I knew I would be in hormonal treatment 5 years, watched closely, and for me sensation was also the deciding factor. (Now stage 4 - so much for 5 years.) I have actually had more arm movement and less lymphedema problems since my reconstruction as my surgeon cut through some of the scars and removed some of the tissue badly damaged by radiation. You are not alone in the annoying numb itch, by the way. They said it goes away. Some ladies in my support group said we just quit complaining because the doctors can't do anything about it anyway.
    Incidentally, a lady came to my support group who had had had a bilateral with immediate reconstruction because her surgeon had insisted it would be the best outcome, even though she was eligible for a lumpectomy. Her surgeon avoided giving her a straight answer to her repeated questions of when would she get sensation back. After several ladies confirmed never, she cried through the rest of the meeting.
    Like you, I did not have a choice about mastectomy. But when there is a choice, it should be the woman's own, not something she was manipulated or coerced into with incomplete or faulty information.
    However, it turns out both my daughters are considering getting prophylactic bilaterals sometime in their 30s if we have not made progress towards a cure, prevention, or at least less toxic treatments by then. They do not want to follow my path and be a 4th generation in a row to have breast cancer. (No, I did not test positive for the BRCA gene.) And I totally understand.
    Elizabeth J.

    ReplyDelete
    Replies
    1. Oh, that poor lady. How could the doctor not tell her? I've seen lumpectomies that were little quarter inch scars - nothing. To imagine a radical surgery like that when it may not have been necessary - horrifying.

      And, really, they have to tell us more than once because it's shocking news and these things take a while to sink in sometimes. I think more and more doctors ought to use peers in their offices - I would be happy to talk to women about to undergo this and during the decision making process. No I am not the best case scenario but I am reality.

      I do what I can via blog and email but I know we all feel that the decision has to be made so quickly or the cancer will jump and spread that we just don't take the time.

      We are definitely making progress, as I am still here talking to you. Herceptin/Perjeta, not very toxic and certainly incredible. But it's just the beginning, and we need more treatments like this. So have your daughters hang on tight. :) I understand that 4th generation would be quite nerve-wracking though and I wouldn't blame them either. The good thing about a bilateral prophy without cancer is there are many more options for recon including nipple and skin sparing.

      It's interesting that you are BRCA negative. Makes me wonder if there is another gene that is involved.

      Delete
    2. There are ongoing studies for other breast cancer genes. They sent my genetic samples to it. There are also studies for a blood test that would be able to detect breast cancer. Yep, they got my blood for that, too. (Can you guess that my cancer center was involved with research?) I literally am the third generation in a row - maternal line - to get breast cancer. Although neither mom or grandma had IBC. Like me, grandma went metastatic in her bones. Right now my daughters are still in their early/mid twenties so who knows what they will find in the next ten years. But apparently, before the Angelina Jolie news, they had been wondering if their breasts could be "hollowed out" and falsies inserted because they are afraid at least one of them might be generation number 4.
      Elizabeth J.

      Delete
    3. Elizabeth, I read this yesterday and thought of you. I hope you see this.

      http://mobile.nytimes.com/2014/08/07/health/gene-indicator-breast-cancer-risk.html?_r=1&referrer=

      Delete
  5. I am one of those women who had a bilateral mastectomy with reconstruction after "only" a DCSI diagnostic on the right. My doctor didn t push for it at all, we had long discussions before the decision was made, by me. Every case is different and the decision for the mastectomy on the diseased breast came after a quadrantectomy with no clear margins on a very small breast that left me with almost nothing. I just turned 37 and the alternative of more surgery, a non existent boob, 6 weeks of radiotherapy and 5 years of tamoxifen did not sound too appealing. DCSI was multicentric. They missed a very visible tumor for a year on mammos and ecos because of my very small and very dense breasts. About the prophylactic side: since they missed one tumor for so long and basically, you can't see anything in my boob, not doing anything would have meant missing something or every time you "find" something suspicious, going through the biopsy and worse case lumpectomy again. The esthetic results of an unilateral mastectomy would have meant 2 different breasts. It may sound shallow but I did have a problem with that. I am 2 months out of the double mastectomy with immediate reconstruction and while it is no walk in the park, I feel that I took the right decision for myself. But I did not decide to get my boobs chopped off on a whim or because a doctor told me so, I did inform myself, read medical studies and made a final decision on what felt best for me. My doctors informed me of the risks and consequences of the surgery, no surprises there. As you said, every case is different and I do agree that going for such a radical surgery without being informed or just because a doctor told you so is alarming.

    ReplyDelete
    Replies
    1. It doesn't sound shallow. It is definitely an important consideration. As a uni, I definitely don't look as good as I would have if I'd done both. But then like I said, with all the problems I ended up with, I'm really glad I did it the way I did.

      What I've found is most people are very happy with their decision, whatever it may be. And, that really means that they have accepted what has happened to them.

      Delete
    2. I had 7-8 sites light up across both breasts back in the spring of 2005, alarming the radiologist. He asked me where and when I'd had a radiation exposure, because that's what it looked like to him. And one of those sites (which were all biopsied and marked with metal clips) turned into stage 2 breast cancer last year around this time. For me, it relieved a lot of stress to have both breasts with all their problem sites removed at one time. All I could think of was how it would feel to walk around with a ticking time bomb on my chest and I'm incredibly relieved to have them *gone*. But that's just me and I did have so many suspicious sites in that non-cancerous breast. My reconstruction surgery is next week and I cannot WAIT to get these thrice-accursed tissue expanders out. I had small dense breasts too and wasn't all that confident that the next tumor would be found via mammography when the first one wasn't. When this is over, I'll have average B cup "gummy bear" implants and that, for me, is a decent consolation prize for what I've gone through. But I've been attacked online in BC survivor forums for having selected bilateral mastectomy, so I'm aware some people feel very strongly about them. Still relieved I made that decision though...

      Delete
    3. Nobody should ever question your decision! There is a certain forum where some of the women can be pretty judgmental. Most are wonderful but a few just can't let anybody be different and sounds like you got caught up with that. We all have our reasons to do what is best and it sounds like you had some pretty spectacular reasons to me.

      Good luck on your exchange surgery. Curious to know how you like the gummies - I'm thinking about maybe switching mine out and seeing if it will help with some of the discomfort. Let me know.

      Delete
  6. Excellent post, as always. Thank you for writing.
    Survivor

    ReplyDelete
  7. I think anecdotal evidence is also a factor. For example, the mother of an acquaintance was diagnosed with breast cancer in her right breast and followed her doctor's recommendation for a lumpectomy. She underwent radiation, chemo, and hormone therapy. Years later, she was diagnosed with a second cancer in her left breast, far more aggressive, it eventually killed her. Her husband says that if she'd just had both breasts removed at the start, she'd be alive today.
    Yes, but does that mean every woman should have a bilateral? Of course not. But people hear those kinds of stories and panic.
    I chose a bilateral because I was not eligible for a lumpectomy first of all -- breasts were too small. Moreover, there were four separate conditions in my left breast which were precursors to cancer. I decided not to roll the dice and had them both taken off.
    I don't regret the bilateral, but think that women should be informed as to exactly what they're getting into. I had a good result, but I know several other women personally who haven't.
    I've also read this ridiculous meme on the internet, that reconstruction is like getting a free boob job -- as if. Hell, if only. Maybe the publicity around Angelina Jolie's surgery has spurred that kind of nonsense.

    ReplyDelete
    Replies
    1. If I thought it wouldn't get me banned from YouTube, I would show a video of what a recon looks like. No, it doesn't look like a boob job. Not even for Angelina Jolie, although doing it before cancer arrives can give the surgeon more to work with. However, the breast tissue has to go and that right there means it will never look normal.

      Delete
    2. You can document reconstruction on you tube as long as you don't show any nipples. Michele from Courage Is My Strength had preventive bilateral as a BRCA+ previvor and after a failed implant reconstruction, did DIEP flap. Her channel documents the entire 3 year process http://youtu.be/4Z_q9a1G2NI

      Delete
    3. Thank you for pointing her out to me, I'll watch her videos.

      I only have one nipple, one breast, so I suppose I could bandaid one side. I remember how desperate I was to see real photos of reconstructions at the time - I knew what doctors were showing on their websites were best case scenarios. I wish I had documented it via video but I didn't.

      I think it might be helpful for women to see what it looks like to have a uni done. As a woman in her mid-50s, I wonder if I'm the one to do it? I go back and forth. I'm trying to gauge the YouTube audience and I think they are all kids so I'm not sure I'd reach the people I want to reach with that medium. We'll see, I haven't given it a good try yet.

      I also worry it might scare people. When I saw photos by one PS, and saw that a uni looked like, I was definitely not happy. I think mine looks better but then again, I am used to it.

      Delete
  8. This is a fascinating discussion. I've very recently had a mastectomy on my left side. I asked my surgeon whether he would agree to remove both - my logic at the time was that I didn't want to be lopsided, and I didn't want to have to worry about 'getting cancer in the other one'. But he said no, he wouldn't remove a healthy breast, he couldn't justify it on clinical or ethical grounds. I found the whole thing very confusing and bewildering, but now, post-surgery, I'm glad he said no (for lots of reasons).

    ReplyDelete
    Replies
    1. Wow, I think you are the very first person I've ever heard of whose doctor said no. Are you in the US?

      Delete
    2. No I'm in the UK. I think the general view is that if you have a family history of breast cancer then bilateral may be justified, but otherwise it's not. Most surgeons - whether working for the public or private sector - did their training within the National Health Service where resources are stretched and must therefore be sensibly rationed ... and therefore procedures/treatments are only done if medically necessary.

      Delete
  9. I will be having a mastectomy on the right side, but not without fight. Following a lumpectomy with postitive margins and a few more biopsies that were still positives felt like I could not fight it any more. Then out of the blue what was normal on the left showed some others areas. I was thrilled to know that bippsy was negative . I did not want to be extreme, but I understand. It is a very very personally decision. And having all the facts laid out will help,us all to make the best decisions.

    ReplyDelete
    Replies
    1. That's what I did. I had several MRIs, and every single test possible to try to save my breast. Not possible. I had LCIS which is a risk factor for contralateral BC but I felt like I'd deal with that down the road if it happened. I knew I'd be monitored closely from then on, but boy.....I had no idea how closely! :)

      Delete
  10. My surgeon, in a private system, talked me out of a mastectomy. She is a passionate advocate for breast conservation, where appropriate. What I think is interesting about the study us that women choose a bilateral mastectomy (talking about cases where it isn't medically necessary) knowing it won't enhance survival, and yet, survival is also their hope from it. This is where doctors come in, and should be doing more to bolster confidence in a less invasive but equally healthy choice.

    ReplyDelete
    Replies
    1. I love it when somebody can say in a few words what it took me a thousand to say. LOL. Beautiful summation and I'm glad you had such a good doctor.

      Delete
  11. I wonder if health insurance would cover the cost of a "prophy" done at some future date. I can well imagine that consideration weighing on women feeling forced to make decisions in a short time frame.

    ReplyDelete
    Replies
    1. Good question. The Women's Health and Cancer Right's Act states that "Surgery and reconstruction of the other breast to make the breasts look symmetrical or balanced after mastectomy" must be covered but it doesn't say how long after. However, many women get revisions surgeries numerous times over the course of their lives and implants only have a lifespan of about ten years, so I imagine that it is covered. It has been 4 years since I've had my mastectomy and I am about to go get my implant checked (just had a MRI) because of pain, etc. I'm considering a surgery to redo it if they can make me more comfortable. I wasn't going to but now that I may have a longer lifespan than I thought, maybe it'd be worth it.

      Delete
    2. as far as insurance covering "evening out" your boobs it is 2 years. my insurance company called me at 18 months letting me know i had 6 months to make a decision. i was stage IIB, lumpectomy, chemo, radiation and now a 6 year survivor... didn't take them up on their offer so still lopsided but alive.

      Delete
  12. I appreciate this article, even though I'm constantly defending my decision to have a bilateral after a diagnosis only on my left. I have lobular (node negative), I'm young (early 40s) it was big (4cm), missed by multiple mammograms, and I wasn't eligible for a lumpectomy due to its position/size/size of breasts. Also, and I think what was critical for me, is that I lost my mother to BC when she was in her early 50s and I was a teenager. So, even though I am BRCA negative, there is some genetic component there that has not yet been identified. I did debate up until the last minute (including while I was being prepped for surgery) about doing the prophy side, but seeing my mother have a recurrence in the opposite breast 5 yrs after her mastectomy and reconstruction definitely shaped my reaction. My surgeon definitely did NOT suggest the prophy side, even given my pathology and family history, but was willing to do it after I suggested it. One thing that isn't mentioned here, that, while not for everyone, can lead to a lot less trouble post-mastectomy is to not do reconstruction at all. I am totally flat (though I do wear small prostheses), and while I do have a little cording/tightness in my left side due to the lymph node biopsy and subsequent radiation (mastectomy is no guarantee against rads either), I have had little to no problems with shoulder movement on either side. In many cases it is the reconstruction that causes so many physical issues post surgery, rather than the simple mastectomy itself. I'm a little numb, but 9 months out, sensation on my skin is returning, especially on the non-radiated side. I think that if I'd done a single mastectomy I would have been more tempted to do reconstruction for symmetry. Again, it's not a walk in the park, and I do think women underestimate the loss of sensation that will come with losing the breasts, even if followed by reconstruction, but for me it was worth the peace of mind. You have to reclaim your sexuality regardless of what surgery you choose, and it really is to some extent about accepting your new body / being OK with it, regardless of its shape. The prophy might not make a bit of difference in terms of my prognosis, but it means I don't have to do mammograms or MRIs on the remaining side, and a significant amount of worry is gone. I'm not naive about the fact that a prophy doesn't prevent distant events from the initial tumor, but peace of mind is important, and I wouldn't have wanted to second guess myself later.

    ReplyDelete
  13. I had a BMX instead of a single because a) mammography did not catch my tumor until it was huge - dr said it was likely there >6 years, and I did not want to wait for the shoe to drop on the other side (lobular cancer here); and b) because I felt that my breasts had failed me. I felt angry and detached from them psychically, and I wanted to detach physically. I didn't WANT to keep breast sensation. If I had a chance to do it over, I would not have had implants either. They look ridiculous, and remind me of my breasts. I realize this position is perhaps unusual, but it speaks to the wide range of personal reasons for pro/con BMX. Thanks for writing this piece, Ann - it helped me to clarify my decision and I have learned from others.

    ReplyDelete
  14. This was an amazing post. Each one of us has a story and the bottom line is its a personal and difficult decision. I have felt I have had to defend my choice to have a lumpectomy. I am Lobular lots of family history but not BRCA. I was multi focal two small tumors good margins but one was close. I would have had to have radiation regardless of my choice. Implants would have been my only reconstruction option. Many people felt compelled to tell me what they thought I should do. Some said get rid of them you can get "new large ones" It never even occurred to me to consider removing the healthy breast. None of the doctors could tell me it would improve my long term survival. If keeping the breasts does not change my long term survival why remove them. I am painfully aware that I could have a recurrence but I will deal with that if it happens. All of us can have a recurrence regardless if you had a mastectomy or a lumpectomy. My sister in law was also Stage I node negative had a lumpectomy two years 10 months later she is Stage IV. Her breasts are "fine" That is the danger of breast cancer it does not progress in an orderly manner. It is sad to think so many of us feel we have to justify our choice. Being informed is very important but each person has to make their own decision as to what they can best live with. There are so many issues to consider about ones individual breast cancer. I do understand how many do just want them off it just wasn't what I was willing to do at this point in time. I realize there are many women out there who did not have the choice to make between a mastectomy and a lumpectomy but for those who do have the choice it needs to be an informed choice.

    ReplyDelete
  15. Actually, having chosen CPM last year before my mastectomy (which followed a failed lumpectomy), I can tell you that there are excellent, rational reasons for doing so:
    1) The BRCA genes were discovered quite recently, and who knows how many more there are out there. My oncologist told me she could not guarantee that I do not have BRCA 4, 5, 6, or 100. In other words, CPM reduces the risk of a second primary contralateral cancer by over 90%, but no one could tell me what that risk was.
    2) No one could guarantee that the second breast was clean. During the time between my original biopsy and surgery, I had an MRI performed. The scan reported even the breast that was already confirmed as containing cancer (as it turns out, 3 different tumors) as all clear; so, scanning is utterly unreliable. And, indeed, the contralateral breast, although not cancer-filled, had several pre-cancerous formations. This was not something that I ever wanted to go through again- and in my youth I had already had benign tumors removed on BOTH sides. If only we had cut them off then...
    3) Mastectomy is not something I ever wished to face more than once.
    4) A DIEP flap reconstruction- the best, most natural, least harmful choice, involving no artificial implants and no more surgery ever afterwards, can only be performed once. This meant that, should a contralateral cancer ever occur, there would be no good options left.
    From the beginning, it was abundantly obvious to me that should mastectomy prove necessary, it would be exceedingly foolish to make it unilateral. I cannot express how happy I am with that decision. Who needs to worry about the other breast for decades in addition to the fear of recurrence??

    ReplyDelete
    Replies
    1. I agree that the DIEP is likely the best flap choice; of all the flap results I've seen it looks the most natural, and also the donor site looks relatively natural, too. However, women should also be aware that there is a risk, however small, of failure. And when the failure happens it is not fun. I know a woman this just happened to. Which is not to say one should skip the DIEP process should something go wrong. However, one should be aware of ALL the things that can go wrong in a surgical procedure. It's always best to go into a procedure knowing all the risks and benefits. There's a lot about the cancer treatment process women aren't told enough about: and that includes side effects from chemo and radiation.

      Delete
    2. Anonymous, it means choosing a REALLY good microsurgeon (mine has never had a flap fail, and she has performed hundreds- that's why I went to Dana-Farber/Brigham and Women's).

      Delete
    3. I'm glad you had such a good experience, but I don't know if the BEST surgeon could have helped the woman I know whose flap failed: her veins are so small, it turned out, it was only due to the surgeon's skill that both flaps weren't lost. If it had been any other patient he would have tried again with a flap from another part of the body. But with her situation he didn't want to risk it. She ended up with an implant on one side and a flap on the other, unfortunately.

      Delete
  16. Addendum: The figure about not enhancing survival is misleading. As I previously stated, it reduces the chance of a second primary contralateral by over 90%. Those of us who were too young to have gotten breast cancer to begin with- pre-menopausal, under 45- know that SOMETHING is off. Since the oncologists have no idea what caused the original cancer to begin with, how can they guarantee it won't still operate on a remaining breast? To be useful, a study would have to examine the incidence of second primary cancers after mastectomy in women under 45 with a long history of previous scares (benign tumours); clearly, there is something predisposing this particular group, even in the absence of a known genetic mutation.

    ReplyDelete
  17. This is a very interesting discussion!

    We are all weighing in with our personal situations, but Ann's point holds: that there is a difference between questioning our individual decision and questioning changes in approaches across a population where the approach is not supported by a large body of scientific evidence.

    Ann also draws a contrast with other types of cancer and how no one is choosing a very aggressive and potentially unnecessary approach - she uses the example of testicular cancer. But we can also draw the same comparisions with breast cancer. There is substantial and growing evidence that women with small, node negative low grade tumors do not benefit from chemo.

    Many doctors are using oncotype and other such tests to support treatment decision making in early stage cancer. When a woman in this situation is upset and fearful, as anyone rightly would be, the doctor doesn't say "OK! I can offer you twelve rounds of dose dense ACT followed by a year of Herceptin, JUST IN CASE, because I really want to to dimimish your stress about this." NO! The doctor is usually saying "medical evidence doesn't support having chemo in your particulcar case for x, y and z reasons"...and then much rejoicing usually ensues. YAY! No chemo! I get to keep my hair!

    A bilateral mastectomy may reduce risk, but if the risk is already low, this isn't terribly meaningful. Just like chemo doesn't reduce risk if the risk is low of spreading. Chemo is a difficult and damaging treatment process, and so only offered based on evidence of clear benefits.

    So why is this not also the case for bilateral mastectomies? Again, across the population, not for the specific individual.

    And why, when presented with evidence, do we STILL want to remove both of our breasts, but we aren't clamouring for more and stronger chemo, longer radiation courses and so on? What is it about our breasts that this is where we focus, knowing the danger really lies in those cells that may be running loose elsewhere in our bodies? This is clearly such a deep and complex issue!

    We can all offer our personal stories, but the point of science is to look at cumulative evidence and draw conclusions, and in the case of bilateral mastectomies, this does not appears to be happening across the broad affected population. And it is sad, because it was a hard-fought battle to move away from the radical mastectomies of years ago. It is also sad that so many women are greeted with envy at the prospect of new perky breasts, as though that someone outweighs the pain and lack of mobility and nerve damage and so on.

    To anonymous - I have read in a few places that the majority of premenopausal hormone positive cancers are likely the result of pregnancy and breastfeeding. Anyone tell you this too? This seems to be the case for me and a small group of unlucky friends all diagnosed at 39 or 40 after the birth of our kids (my 3rd one). I am hoping that with normal hormone levels now, I am not at risk of a new primary tumor.

    ReplyDelete
  18. Hi,

    We just wanted to say we came across with your blog while looking for information about people who have gone through a mastectomy and we are amazed for all you say.

    I can't describe the feelings I had when I read the suggestion of removing your healthy breast. So, I told my workmates and we all wanted to write a post to tell you how important is sharing both bad and good experiences. Without your testimony we had never known of this and much more topics. This is not a post to sell swimwear but a few words to cheer you up we hope make you feel proud of yourself.

    Keep up posting, as you're really good at it.

    Regards,

    UK Swimwear's team

    ReplyDelete
  19. Thanks Ann for this. I have been beating myself up for not removing both breasts from the get go, as I discovered AFTER surgery that I had lobular cancer. Prior to surgery, the diagnosis from the biopsy was ductal. I trusted my surgeon who did not recommend removing the healthy breast, as he considered it unnecessary surgery. However, since then, I have read about many women who did have double mastectomies, and I have been worrying myself sick that I was courting disaster by not having done the same. Your blog, and some of the comments, made me feel a lot better about my decision.

    ReplyDelete
  20. I had both removed partially for symmetry but mostly because my MRI found a shadow of something on the opposite breast. It turned out to be calcifications. I just didn't want to take the chance. I do not feel over treated. Just relieved.

    ReplyDelete
  21. I had to fight my doctors for a bilateral mastectomy when I was diagnosed 9 years ago, at age 34, with an aggressive stage 2 tumor. My decision had nothing to do with being overly reactive or dramatic, and everything to do with not wanting to have to sweat mammograms for the rest of my life. Ironically, I had a recurrence in my mastectomy scar 7 years later. I'm not sure if this invalidates my decision, but it's one I've never looked back from.

    It is impossible to say whether a mastectomy decision is warranted or necessary, but if it brings peace of mind to the patient, who cares? In 2005, I was extremely frustrated by the fact that every doctor I spoke with pushed "breast conservation." It sounds like the pendulum has swung the other way. I don't think there is any right or wrong here, except that women who are faced with this awful decision should not be forced to second guess.

    Cancer is a game of making the best of a bad situation. Nobody has the right answer.

    ReplyDelete
  22. As far as I know, this craze for unnecessary bilaterals is purely a US phenomenon, and a very strange one at that.

    In the UK, cancer treatment is paid for by the NHS and there is no way you can have a healthy breast removed on the NHS unless you had either the BRCA gene or a very strong family history.

    In principle you could pay for the surgery, but even then it might be difficult due to medical ethics reasons. The situation is probably similar in other European countries.

    Women who request unnecessary mastectomies are likely to be suffering from high levels anxiety and stress and should be given appropriate reassurance and psychological support instead of subjected to inappropriate (and mutilating) surgery.

    Why aren't the doctors who take advantage of women at this vulnerable time facing disciplinary action?


    ReplyDelete
  23. The "symmetry" rationale is just bizarre. Reduction and augmentation are symmetry procedures, but a mastectomy is amputation. All the difference in the world.

    Are US doctors not subject to medical ethics like they are elsewhere in the world?

    ReplyDelete
    Replies
    1. Penny, I do agree with your comments,especially about the stress and anxiety and the need for mental care, which is sorely lacking in the US. I have long advocated talk therapy for every women with cancer - just a session or two for those who may be okay with it, but every woman should have access. I have met and seen women whose anxiety is off the charts and the do need help.

      However, you have to understand that our government has created a law that allows for women to have "even" breasts, aka symmetry. It is the Health and Cancer Rights Act, and it states that we are allowed to have the surgeries to give us a symmetrical appearance, including "Surgery and reconstruction of the other breast to produce a symmetrical appearance"

      Men and breasts, huh?

      As you know, not all women can achieve any kind of even appearance with a mastectomy on only one side. There are women with very large or saggy breasts. There is only so much an implant or autologous solution can do. And so because of this law allowing for symmetry, women are allowed to have breasts the same size or as close to it as possible, and sometimes that means removing one that cannot possibly match the reconstruction - hence the unnecessary bilateral.

      And it would be more likely that a doctor would be disciplined for NOT allowing a woman this procedure.

      Yet, it has morphed into a procedure for women who cannot achieve symmetry to be a procedure for everybody, to the point where a woman who has cancer doesn't even think only one breast will be removed. I know very few women who are unis like myself. Seems everybody goes for both.

      And, I think many women don't understand why it's done or why it started. They believe that women are getting bilaterals because it's safer for their future. Which it isn't at all as every study shows and the interesting part is they know the stats but don't seem to believe them, which is where the mental health aspect comes in. Doctors have become so accustomed to doing it that THEY just don't think about it.

      Not that I speak for a doctor, I would certainly love to get a physican's opinion on this, especially a plastic surgeon.

      But women who could easily get an even appearance with an implant, are doing bilaterals and that's where we've gone wrong. That's where the medical profession needs to come into play and reign back patients. But as long as this law is interpreted the way it is, than people are going to continue to do surgeries looking for that elusive perfection, which rarely exists in real life, much less after an amputation.

      Delete
    2. For the small minority of women for whom a reduction or augmentation would still leave them with a wildly asymmetric appearance, there might be valid reasons for mastectomy and reconstruction. In Europe these women could probably also get a mastectomy in this situation.

      But encouraging women to have unnecessary mastectomies for risk reduction reasons when the doctors know there is no risk reduction is exploiting vulnerable patients for personal gain - a open and shut case of serious professional misconduct. Elsewhere in the world, this would be scandalous behaviour and doctors found guilty would be struck off.

      What would happen if patients had cancer in the leg or eye? Would US doctors encourage them to amputate the other leg or eye without valid medical reasons?

      Delete
  24. This is a really amazing post. It is non-judgmental but at the same time really lays out the facts of the possible effects of mastectomy. I am three weeks post-lumpectomy and am still kind of surprised by how painful even a 'simple' lumpectomy was. Of course, people choose mastectomies for different reasons. But I think with breast cancer too much attention has gone toward breasts, neglecting the side effects of the surgery itself.

    ReplyDelete

Thank you for commenting. If the post is over 14 days old, the comment will be moderated and will approved later. This is a spam prevention technique - but I love to hear from you!