WSJ Article: The Double Mastectomy Rebellion

clarrn

The tone and language was what I have an issue with. It makes it sound like you are misinformed or just scared if you chose bilateral. Do you need a bilateral is a valid question but this was over the top.

voraciousreader

A study, recently reported and published here, stated there MAY be an advantage of having a lumpectomy and radiation over having a mastectomy.

http://www.breastcancer.org/research-news/lx-w-rad...

That said, I agree if we had a better way of BC screening AND a better way of determining who is more likely to recur, then we can have a better articulation with our health care providers. Furthermore, the trade off of having more patient engagement in the decision making comes with a price. There is an expectation that patients are capable of making medical decisions. However, how are those decisions being made? Should patients first be screened beforehand based on intellect and emotion? Reading How We Do Harm, Dr. Otis Brawley tells us about how an Ivy League educated female chose chemotherapy when it clearly was not warranted. Dr. Brawley who is the medical director of The American Cancer Society called out the physician who agreed to do the chemo. The oncologist claimed the woman was going doctor shopping and believed he could safely treat her rather than let her find someone else who might harm her. Dr. Brawley courageously told the oncologist that his idea of "safe" clearly was wrong because the risk of chemo outweighed the benefit. This example illustrates the power of the patient over the physician.

Being diagnosed with cancer is frightening for most of us. Personally, the hardest decision for me was permitting my team decide among themselves what treatment plan would be right for me. Call me paternalistic if you like. However, I prefer to let others whom I believe are more intelligent and have more experience than I have decide for me. I certainly appreciate having as much information as possible to back up their decisions, but nonetheless, I depend on their intelligence, experience and clarity. Giving my team permission to decide what is right and best for me makes me feel empowered!

I think we are heading down a slippery slope when we ask patients to participate in the decision making process. Make no mistake, if you read Eric Topol, MDs most recent two books, you will notice that patients are being asked to empower themselves with understanding their physical health in new ways. I like that idea, but I see potential problems that can escalate to mine fields. If we are being asked or being told we need to participate, then we will continue to see studies like this one where patients will be stepping up to the plate and participating in decisions whereby the decisions might not be what the physicians had in mind for the patient. So in that respect, one might say the patient is in fact rebelling.

BTW, Dr. Topol's earlier book is entitled, The Creative DESTRUCTION of Medicine. I think it is a great title. Basically, what he is telling us is that we have to creatively destroy the present delivery of healthcare to come up with a better way of delivering care. Having patients take ownership of their health is an important goal....but as the saying goes, you must be careful about what you wish for....

coraleliz

As for the WSJ article, I didn't take offense to the " cut of your foot" I was irked by A woman can emerge from the procedure feeling good about her body, Dr. Blackwood said. "She swims and she runs and she goes to the gym and she gets undressed," I do all those things & more. They help me forget about BC. I don't feel bad about my body or my 2 diagonal scars on my unreconstructed chest.

From the get go, I wondered why so few plastic surgeons accept insurance. After all, we are facing a possibly life threatening disease, that could leave us disfigured. Why aren't they more compassionate & want to help us out. Is it because they see BC patients as wanting more expensive procedures when a lumpectomy would do. If so, why should they take the discounted reimbursement our insurance companies are willing to pay. The same plastic surgeons that don't except insurance often provide free services to those in need for other services.

AudreyB

When my breast surgeon called me with the news my left breast mass was positive for cancer, and the right had both DCIS and LCIS, her exact words to me were "your best option would be a double mastectomy and reconstruction". This was in February 2015, and while I struggled with my final decision for BMX, first deciding on lumpectomy with radiation, I finally was able to make the right choice for me, with her words ringing in my head. I was terrified, but went in knowledgeable and assured I had made the right decision. I would hope the future holds the same choices for all women facing this horrible disease.

Warrior_Woman

A major concern I have and a primary reason I posted this article is the very real possibility that the right of choice may not exist in the future and / or insurance will not cover anything more than what the medical establishment deems medically necessary. This is the case for most other medical diagnosis and the article hints at it.

As a side note, it was mentioned here and brought to my attention that some women have regrets after making decisions without full knowledge of the conditions and alternatives.

I've seen numerous articles such as this WSJ article and I am sure I take it personally. The article is not saying that all women who choose a BMX do so for the wrong reasons but it has that undertone.

neverthought

Forgive me as I know I am not so good at expressing myself. I was just saying there is more money to be made in chemotherapy and mammography/ultrasound/MRI and biopsies than in surgery which is once and then done. I've worked with physicians for many years and almost all have only the best intentions. They are being eaten alive by the insurance companies and health systems breathing down their necks to save money and make a profit. I think, though, that if there is profit to be made someone will exploit it. In the case of breast cancer profit is more on the detection/diagnosis/slash/poison/burn side of things rather than prevention and evidence based treatment. So I think systems (pharmaceutical companies, big hospital systems) may be more invested in the treatment side of this tragic disease than basic research in causes and prevention. Research is expensive, especially when it doesn't result in a product you can market. I have nothing but respect for my surgeon, who is self-employed with a small office and staff. The staff and radiologists at the breast imaging place and the nurses and physicians at the treatment center have been nothing but wonderful. But the imaging center can afford to provide a spa like experience and the founder lives in a million dollar home in the most exclusive area. And the oncology center has a beautiful building and office, though the transfusion room is depressing and cold. The waiting room is much nicer, go figure! I just wish all that money was spent on basic research into prevention. And research into treatment that is more than just non-specific slash/poison/burn. I don't want the younger generation of women growing up now to have to go through breast cancer treatment if the cancer itself could be prevented. That's all.

I didn't have a choice about getting a lumpectomy, but will continue to wonder if I should have had a double mastectomy. Hopefully I'll have a long full life to think about it. Hopefully there will be more answers than questions about causes and cures in the near future. But most research is on drugs that may only prolong your life for a while rather than finding out why so many woman get breast cancer. I can't help it. It makes me mad.

placid44

Warrior,

I had the same concern...it implied that if you are BRAC mutation negative, then you don't have an elevated risk of contralateral bc and don't need a bilateral mast. That's incorrect. TNBC women under age 45 have an elevated risk. (Sounds like early stage thirtysomethings, too, and maybe others I'm not aware of because they don't apply to me). I had fact and tone issues with the story.

windingshores

My surgeon's nurse practitioner told me they are already getting push back on some BMX's from insurance companies.

I had to have my cancer breast off first without the other one to convince my surgeon that I really knew what I wanted. I could have changed surgeons. My only hesitation was due to other health issues but I was sure I wanted a double. However, she said she didn't feel I was 100% certain. She readily agreed three months later once my treatment plan was certain and the first one had healed. She said I was now "savvy" enough and knew what I was getting into.

The nurse said that with some lobular cancer, which is harder to detect with screening, and some atypical hyperplasia in my cancer breast, they would have been able to argue with BC/BS that I needed the other one off. As it was, my own insurance (I am not on BC/BS) paid.

The proportion of women having BMX on this forum is way, way higher than in the general population I think.

I am in my 60's and didn't care about reconstruction etc. I haven't worn a bra in ages and didn't want to do a prosthesis. I just wanted to go flat, and I hated having one breast and the other one flat. The healthy breast felt very sensitive, which may have made having one breast more uncomfortable. And the sensations made me worry about it. Turns out it was full of cysts, including a large one right under the nipple. Did I need the breast taken for survival? No, but those cysts were uncomfortable and might have made for an argument for removal, considering that they also would cause anxiety over the years. There will always be ways to argue for a BMX regardless of BRCA results.

I do want to say that if I had to choose between a BMX (especially with expensive reconstruction) and, say, an experimental drug for cystic fibrosis, or a continuous glucose monitor (which my own daughter uses) in the context of a macro level decision on health care dollars spent and covered, BMX w/reconstruction, or even without reconstruction, might not score high on my priority list. The emotional cost of dealing with difficult to manage type 1 diabetes- and the absolute danger every night- really does make a continuous monitor essential. I am not sure if BMX with reconstruction falls in that category of priority. There are many many other examples, that is just one in my household.

In any case, I was in a hurry to have my second one taken off because I really do think that insurance companies are going to start saying no. And clearly surgeons are worried about liability with potential for infections and other complications when the surgery is elective. Every doctor I saw, and I had third opinions, offered the opinion that too many BMX's were being done.

Hopeful82014

I agree with WW - I think this is part of a campaign (orchestrated or not) to start denying women PBMX when, in the eyes of insurers, a lx or mx would suffice.

I had a lumpectomy but thought long and hard about mastectomy. Once I learned that I was even higher risk due to genetic issues, I thought equally long and hard about BMX. I appreciate that I had that choice and would not want to be deprived of it in the future.

SummerAngel

I don't see a conspiracy here. The article quoted many different people with different opinions, and I didn't find it to be severely one-sided. The fact is that the rates of PBMX surgeries have risen a lot, and this article explores various ideas as to why.

Blessed2xSurvivor

recently diagnosed with IDC stage 1, age 33. I live in Houston and trying to decide where to get treatment. Any suggestions? I took a genetic test, but I think I know the results being that I've had 3 relatives with the same cancer. Two of them are survivors! I'm leaning on getting a double mastectomy.

windingshores

Do you folks think it is about double mastectomy or about reconstruction for both. If everyone went flat, would there be a problem? I suspect it is the cost of the surgeries involved for reconstruction that is creating the backlash, though liabililty concerns could also be driving this.

Does anyone know the exact wording of the federal law?? I was told it guaranteed symmetry, that's it. Two flat areas are symmetrical, so can they require that reconstruction be paid privately?

Hopeful82014

I agree, Kay.

SummerAngel

I still don't see it, personally. The only thing I saw in the article that seemed to have that tone was the quote by the Dr. Miller guy, which I thought was put into perspective with the other quotes.

Also, I think people in general can very well be irrational and hysterical, and it's definitely good for health care providers to make sure every patient facing a serious health decision be well-informed and given the facts to allow them to not make a rash decision that they may regret later.

muska

I think we are reading too much into it: this article is just an article attempting to describe different opinions about this complex issue. There are no right or wrong side here, medical professionals are correct when they speak about the trend, individual patients who selected the options that differ from the mainstream recommendations made the right decisions for themselves. This is one of those situations where each case is unique but when one looks at the overall dynamics something appears wrong. However, that perception may be wrong.

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voraciousreader

If one reads Otis Brawley, MD's book, How We Do Harm, or watch his lecture before medical writers, you will appreciate how poor of a job the medical writers are doing in describing controversial issues. Clearly, they can do a better job of enlightening the public.

Oftentimes, unintentionally prejudices get in the way of reporting and clearly, medical writers could and should do a better job. And so should us readers!

That said, I think the expression, "Kill the messenger" is in play here and that is sad. I get it. Some of you take exception to the tone of the article. I guess everyone needs to be politically correct. We need to sanitize our words and ideas. And, be careful about what we say out of fear of offending everyones' feelings. So how are writers supposed to report controversial info without offending readers? With respect to this issue, the fact remains that medical providers are concerned about the uptick of patients choosing BMX. The fact is patients are rebelling against conventional wisdom.

Is this an insurance issue? Yes and no. Insurance companies carefully look for standard of care and medical necessity when making decisions.Are they looking to save money? Absolutely! But they are also looking at making sure that doctors cause no harm. It never ceases to amaze me when patients go down the rabbit hole and choose to think that all insurance companies are in business to make money first and that fuels all of their decisions. Well, if that was true, then they wouldn't pay for brachytherapy even though it is still considered "experimental." Likewise, insurance companies shouldn't pay for that BMX that isn't sometimes necessary, but they do. Back in the day, doctor knew they were harming many patients by OVER treating patients with chemo and insurance companies were paying for that over treatment! But times changed and doctors and their brave patients proved that not all patients needed chemo and the tide changed and the standard of care changed with it and now fewer patients are receiving chemo. None of this would have happened had a few brave patients and doctors hadn't buck the system! The same is true with respect to lumpectomy. Had a few brave doctors and patients not spoken up, most of us wouldn't be given a choice! And thanks to those controversial people, I am personally thankful! And insurance pays for that lumpectomy as well.

Today we are at a crossroad. Do we question whether patients are being over treated? Or do we stand on the sideline and NOT question whether patients are being over treated because if we do, we fear being ostrisized! I would like to believe that there is a need to question over treatment and published it and then let the chips fall wherever that may be.....

leggo

I'm pretty sure everyone, including myself can read just fine.

voraciousreader

http://m.generalsurgerynews.com/Article.aspx?d=In+...

Is the above article describing the subject more politically correct? The facts are no different and still concerning.....

You have to sign in to read the article....

jessica749

Of course patients are over treated!!! I don't think there is a competent oncologist alive who would disagree with this! Not the point.

jessica749

And before you go on some more about Brawley's book, I'm not talking about people who get chemo when it is not warranted by the guidelines.

I am talking about every single DCIS/idc patient who is treated as if there is a possibility of microscopic spread, undetected. Who is given years of tamoxifen or AI when there is no evidence of spread. In that sense and others yes everyone is overtreated as it should be until the day that doctors can say more categorically who is at risk of metastatic disease and who isn't. By necessity, most are overtreated. Full stop, top oncologists agree and continue to "overtreat."

Btw, I didn't get a cpm/bmx to "treat" my breast cancer. The cpm had nothing to do with 'treatment' but rather something I wanted to do going forward with my life. I fully understand that it had nothing to do with 'treating' my cancer. So when you talk about over treatment etc that's not what cpm is about. And the article could have explored the thoughtful decisions by women to go that route in the face of 'conventional wisdom' rather than begin with a patient who consults her massage therapist ahead of her medical doctor when it comes to something like cancer. IT's just about good reporting , not being sensational etc., and it's not to do with being politically correct.

But anyway, the article isn't worth this much conversation in my opinion. I 've commented way too much about it.

voraciousreader

Jessica....so the issue is the tone? How else would you want this issue reported? Shoot the messenger? Last week, H. Gilbert Welch wrote another opinion column for The Los Angeles Times indicating the latest JAMA finding that far too many people are being over diagnosed and over treated by population based screening mammography. It took but TWO days before the shrill rebuttal began in the Letters to the Editor.

The point is very clear. Let's dispute the tone and ignore the facts......

NineTwelve

I see valid points on both sides.

But I think I have more confidence in someone's objectivity when they DON'T use terms like "hysterical" and "shrill" to describe women who defend the BMX, against "brave" doctors who are being "ostracized" for speaking up.

And no, I'm not being politically correct, I am just pointing out the implications in these non-journalistic, very biased terms. No one wants to shoot any messengers, or ignore the facts, but do we have to just take it, when the tone is so condescending?

voraciousreader

Otis Brawley, MD, has repeatedly said that many medical writers could do a better job. That's why I prefer to read the actual primary sources, that is, the studies. Unfortunately, sometimes the studies themselves leave unanswered questions....likewise sometimes the journals that publish them are questionable as well. So where does that lead us when it is time to make an informed decision?

I prefer to look at trends and the accumulation of studies so I can maintain a broad perspective. Nit picking, parsing words and damning the writer of an article is unnecessary. It is all about the facts. I dismiss judgement about writers' styles. I recognize that all writers have biases, whether they appear objective or not. THIS WSJ article certainly could be better written. However, it does an excellent job of giving facts. Doctors are alarmed by the number of patients choosing BMX. Are women correctly understanding their own risks and benefits of BMX? Clearly, they are not and this article tells us that there needs to be a better dialogue between doctors and patients.

Hopeful82014

I would hardly refer to the two letters to the editor that I've seen commenting on Welch's piece as "shrill." Both made good points that may help other readers make better informed decisions regarding his statements.

voraciousreader

Hopeful...the title of the Letters, "Ignore the Mammogram Naysayers and Get Screened for Breast Cancer" isn't shrill? AND....the first writer is an imaging physician....and goes on to say, "The truth is that mammograms save lives.". Hmmmmm....For sure, there in lies a more patriarchal tone! What exactly is she referring to as, " The truth?" Am I supposed to believe her on face value because she is a physician and knows, "The Truth."

With respect to the second letter, the only way this women knows whether or not that population based mammogram that she had that identified her cancer will have saved her life is when she dies from something else.

"The Truth" according to Dr. Welch is that breast cancer therapies have remarkably improved over the decades and population based screening imaging is picking up many more breast cancers very early but has done little to identify earlier those patients with aggressive late stage cancers. According to Dr. Welch, diagnostic mammograms save many more lives. So....at the end of the day, "The truth" is population based mammograms DO save lives, but sadly, not as many lives as imaging specialists would like us to believe.

So...hopeful, IMHO, the title of the Letters was shrill and the Letters were just plain stupid.

BTW....Dr. Welch's wife is a breast cancer survivor. A diagnostic mammogram found her tumor.

Hopeful82014

VR - I disagree with you entirely but this seems to be discussion that is much more important to you than to me. I am stepping away from the increasingly shrill and insistent tone of your posts which I find unpersuasive and probably always will.

Italychick

The article can say women are overdoing mastectomies, but to me I see the following issues.

After reading a lot of comments on this forum, I have seen a large number of women who were told they had one area of concern, and when they elected a double mastectomy, more cancer sites were found. Not diagnosed by doctors or mammograms, but found through what would be considered elective surgeries.

A significant portion of women found the lumps themselves even after clear mammograms. Particularly with dense breasts, the women are in essence finding the cancers on their own, and even having to insist on further testing.

Several women on my chemo forum have been denied scans, such as PET, MRIs, etc. they are terrified there is cancer that has been undetected, and some women on these forums have gone on to find they are stage 4, directly from stage 1. Was the stage 4 there from the start, or missed? If cancer wasn't removed, did it have the opportunity to then become metastatic?

As for seeking the opinion of others outside the medical community, such as massage therapists, I see nothing wrong with that. These people are typically the ones who see women in pain or who are at an advanced cancer stage, and know their personal stories. I myself consulted with my primary care physician who has a large aged patient population, and he said he sees a lot of long term issues with the currently practiced standards of care, including long term complications from chemo and radiation. Is he an oncologist? No, he deals with the aftermath of chemo and radiation and drugs and their effect on women 10-20 years down the road. Here we are looking at quality of life issues long term.

The psychological terror that women go through from constant scans, biopsies, etc. creates a tremendous stress and mental damage. A double mastectomy may not prevent a metastasis, but it does give them quality of life until another cancer occurrence is found.

Young women who have breast cancer seem to have ripe conditions for recurrence or metastasis because they are in the years their bodies are pumping out large amounts of hormones. They also either have small children, or want them, and fear leaving their children behind with no mother. I do not blame them for wanting a double mastectomy, I even thought about it myself, and if my cancer recurs, I am so going right there.

There is also a long term concern that radiation can cause problems outside the five year recurrence rate often used as a benchmark for breast cancer successful treatment. I realize a double mastectomy can still mean radiation, but for a young woman worried about quality of life without heart and lung damage, ribs breaking, thyroid cancer, secondary carcinomas cause by radiation, a double mastectomy seems to be the lesser of two evils. I realize not everybody has long term radiation or chemo side effects, but each woman looks at the risk to herself and what she is willing to bear.

So screw a doctor who would say the things said in this article.

muska

Italychick - excellent points.

The reporter could have published a few stats about lumpectomies to give readers a bit more info and one more factor that influences surgery decision, e.g. that about 20-25% (most recent numbers, saw 30% earlier) require re-excision because of positive margins. Many women go through multiple re-excisions resulting in disfigured breast. There are other stats out there to show why mastectomies are not going away but they were not presented, which is fine b/c this is not a scientific research to begin with.

Lumpectomy re-excision rate