Tuesday, August 6, 2013


I'm really not trying to be adversarial or stir up controversy.  I'm simply calling it like I see it.  The Journal of the American Medical Association has another article which appears in the the overdiagnosis/overtreatment and maybe we shouldn't call it cancer issue.

I once had a doctor tell me, "Solutions create problems."  I'm sure I looked at him as if he had two heads.  Stay with me a bit.  We'll get back to this.

The article is titled Contralateral Prophylactic Mastectomy for Breast Cancer, Addressing Peace of Mind.  Unlike the rename cancer piece, this was written by two doctors.  No panel was assembled but nonetheless, the patient voice is being silenced.  I am very familiar with one of the doctors and I'm equally impressed with the other.  In fact, in doing my homework, I see that there is a study underway to develop methods to improve breast cancer treatment by attempting to find ways to make better decisions.  What constitutes a better decision, however, is a highly personal matter.

On Monday evening, we had an exceptionally robust #BCSM chat about the overdiagnosis article.  The transcript is worth a glance.  The transcript is a prime example of doctors and patients sharing thoughts and ideas.  If I'm not mistaken, there were more doctors in this chat than ever before.  Laudable.  And grateful.  We all listened, we all spoke, we all learned.

Mostly, we didn't need someone to get in the middle to hold a rule book.  That is my problem with the Viewpoint in JAMA.  I learned a new term during the chat.  Decisional regret.  Sort of like buyer's remorse.  And I get it.  I really do.  Making decisions to permanently alter ones body should not be made lightly.  Indeed, such decisions require tremendous reflection on the part of the patient.  And first, a lengthy discussion with the doctor outlining treatment options is essential.

Communication between the doctor and patient.  Having a good understanding of true risk factors and what is being achieved (or not) by removing healthy tissue is paramount.  Seeking a second opinion, or in some sketchier cases, a third, is something that should be encouraged.

And then, it's incumbent upon us to at least attempt to decipher what we have learned.  Attempt to make a decision.  I agonized over mine.  I was told in no uncertain terms that my surgeon would NOT allow me to opt for a bilateral mastectomy until I went home with the answers to my questions and gave it more thought.  I had some damn good questions.  I found my notes several weeks ago.  I shared the pages of questions in a blog I wrote in June.

The solution suggested in this article troubles me.  To stop the overtreatment and the unnecessary removal of healthy breast tissue, the authors think it might be a good idea to have the insurance companies step in and refuse payment unless there is a clinical indication for doing the surgery.  THIS angers me.  Why would we muddy the waters by adding a third party into these discussions?  Why would we turn over decisions to someone at a desk, likely hundreds of miles away, reviewing charts and looking for any reason to save money.  Refusing surgery is a great way of saving money.  For Sure.

This isn't patient centered anything.  Basically, it might come down to this.  We are diligent.  We are thoughtful.  We have good reasons for choosing "the big surgery."  Our doctors explain the risk factors, we process the information, we understand the full ramifications of our choice and we are still confident that is the right choice for our set of circumstances.

It may not fit the medically necessary criteria but it may fit with the emotionally necessary criteria.  Maybe I want to look like I have a matched pair.  Maybe I don't feel like I can deal with the scanxiety of having every little thing examined with a fine tooth comb because, after all, "you are a high risk patient, we can't ignore that little speck, we will repeat the mammogram in three months."  Maybe I just don't want to go through all of that.....

I hear your evidence based science and I'll raise you five intangibles.  Please don't insult me as an intelligent woman who has done her homework by throwing your arms in the air and hiding behind the cloak of, "this won't be covered by your insurance."  That is a solution that will create many problems.  There will be those who fall in some sort of gray zone who will have the added the stress of fighting insurance companies because that's just what one needs when entering the "you have cancer" nightmare.

What does this feel like to me?  It's patient centered care and it's educating and empowering us.  Right up until we decide that we want to do something the doctor feels is wrong.  In an instant, we are engaged, empowered and educated patients who will quite quickly be removed from the shared decision making process.  No longer partners in our care, we will become pawns in a medical maze.

That's just wrong and that's one giant step backward.  It's because I said so thinking.  It's pretty insulting.  It's dismissive and it's closing off the communication that is at the heart of being an engaged patient.

I would hope those in the medical community who feel this is an acceptable solution to a very complex problem will rethink their position.  Because, frankly, it's not acceptable to those of us whose bodies are on the line.

Our voices matter.

Most of all.  Our voices matter.


  1. AM, I didn't see this one coming as a solution to the BMX debate!!!
    "Have the insurance companies step in and refuse payment unless there is a clinical indication for doing the surgery."

    OY. This gives me a headache to think about. Going to work on a blog post now.

    Thank you for sharing.

  2. Arrggghh! running away screaming...

    But that's okay, I am sure there will be someone following me and saying "don't worry your pretty little head about it."
    AL in the Midwest

  3. dear anne marie,

    thank you for informing us about the latest, most revolting, frightening, and completely inappropriate suggestion of letting insurance companies determine destinies of those who are faced with the most agonizing decision they will probably ever have to make. really?? I cannot even imagine a more convoluted idea. it makes me very suspicious about the motivation, as well as having no patient in-put. e-gads! I have a head- ache and I feel nauseous - GRRRRRRRRRR.

    thank goodness you are the very epitome of the voice of reason, and are skilled at the kind of advocacy dialogue that needs to be heard. please let us know what action should be taken to head off what I agree is dismissive, insulting, and a completely backward step to all we have hoped to achieve - patient centered care.

    much love and gratitude for this post, anne marie

    Karen, TC

  4. Thanks Anne Marie, for your diligence in keeping us breast cancer survivors informed about these rants and raves by our doctors! I missed the BCSM chat on Monday and will read the transcript today. PinkLinkVicki

  5. From the moment the lump turned up, I knew I wanted both breasts removed. It was the first thing I said to the breast surgeon--"Both. Off. Now. ...but you can't have my lymph nodes." She ignored me.

    Then my path report came back HER2+, and I was shortly thereafter scheduled for bilateral mastectomies. No arguments--not a peep. But even if I hadn't been HER2+, I'd have wanted both gone--at that point, I was still young enough that I expected to come through surgery without too much trouble, but I had doubts about ten years down the road. Recurrence is not an infrequent phenomenon, and with all that it entails, another round of surgery for a second unilateral mastectomy just adds insult to injury. Not to mention that it gave me the freedom to choose no reconstruction. A flat chest is not a problem for me--no more bra straps...yayyy!--but I'd go crazy if I were left with the choice to wear a prosthesis or to walk around lopsided.

    I feel very lucky (for a certain value of "luck") because the other breast was on its way--"...right breast with fibrocystic changes and scattered luminal calcifications. Atypical ductal hyperplasia of nipple duct." Talk about dodging a bullet.

  6. Anne Marie, I am exactly the same as Rhonda. My doctor gave me my options, I picked remove both breast, I did not want to have to go down the surgery road again. I did have reconstruction, but my doctor explained all options to me, and explained again when I made my choice. I wanted to be proactive, and when they examined the second breast tissue removed, it was just a matter of time before I would had to have that removed also. During this time, as all of us know, when the word cancer is spoken you are completely freaked out, and if I had to deal with insurance about my decision and my body at the young age of 42, I would have gone postal. I was lucky to have the best surgeon in Dallas who did tell me all my options, let me make my decision and then also went back and explained what my decision meant for me pre and post surgery. You know the rest of my story, but I have no regrets with how I handled the first go around. Thanks for your continued diligence in getting the story out.
    Love from Texas

  7. Thank you for this post. As a breast surgeon, I was also disturbed by the recommendation for insurance companies to regulate surgery. There is no question that mastectomy rates are increasing, including for early stage disease. There is no evidence that a mastectomy improves overall survival, including for Her2/neu positive or triple negative breast cancers. And there is no evidence that contralateral prophylactic mastectomy improves survival rates. However, that does not mean that insurance companies should regulate the type of surgery.

    It remains an option for many women with breast cancer to undergo a mastectomy. It is not the right operation for everyone. However after appropriate education and counseling, it should be the patient's decision. As physicians we should offer all of the options, including a frank discussion of local recurrence rates, as well as complications of both breast conserving surgery (including radiation) as well as mastectomy with reconstruction. After that - the patient decides.

    Men who develop prostate cancer has multiple options - depending on the type and extent of disease, a patient may have the option of surgery, radiation therapy, or hormone therapy. All may be perfectly appropriate options and patients are encouraged to research all of their options, seek opinions, and then make the decision that seems best for them at the time. Breast cancer should be no different. We have several options available for patients with early stage disease. It is our job as physicians to make as sure as possible that patients are not making decisions simply out of fear. But after we educate, and hopefully remove some of the fear, the decision should be up to the patient.

  8. Thanks AnneMarie and all the previous commenters. The women I know who have had to face such decisions did much research, information-gathering, and most importantly soul-searching. Me included. The tone of the article referenced above is inconsiderate. I had cancer in my right breast but not my left. I knew the statistics that removal of the left breast wasn't considered medically necessary. But as the third sister to face the diagnosis, after having a lumpectomy and a re-excision, and after months of chemo gave me time to consider my final surgery option, I knew having both breasts removed was my best option. If not medically, mentally, emotionally, and spiritually --and those areas count just as much. I appreciate Dr. Attai's comments. Give the patient some credit for being able to discern what is best for her/him. I mulled my decision for months. It wasn't easy. But I have no regrets regarding the choice I made. Thanks!

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  10. Anne Marie,

    I have a question that I hope you will answer. Dr. Attai said that mastectomy rates are increasing among early stage disease. If one chooses mastectomy with early stage disease, does that individual still go on to further therapy?

    I, like you, am absolutely repulsed by the suggestion that insurance companies should be making medical decisions that rightfully belong to the individual facing the diagnosis in collaboration with their oncologist.

    Thanks for fielding my question.

    Standing with you,

    1. I can only speak for me. Had I chosen lumpectomy, I would have had radiation. When I opted for mastectomy, although radiation was removed from the equation, I still did 8 rounds of chemo.

      Further therapy is decided based on many factors. My friend had triple negative BC and even with a bilateral mastectomy, radiation was recommended in her case. (She refused) ....

      And yes, Steph, I'm reading your mind right now..... in my case, radiation was a big factor in why I opted for bilateral mastectomy. I knew a 2nd cancer would result in removal of the breast and reconstruction is more difficult with radiated tissue. There were other big factors but that one was very big. It's all about what we are willing to tolerate....

      Proud to have you by my side...


  11. In response to Stephanie's question - the additional treatment (such as radiation therapy, endocrine therapy, or chemotherapy) depends more on the stage of disease and biology of the tumor rather than the type of surgery. If there is an indication for chemotherapy, such as triple-negative, high Oncotype Dx or MammaPrint score, or positive lymph nodes, you will still need chemotherapy even after mastectomy.

    Radiation therapy is routinely used after lumpectomy. However it is also recommended (and has been shown to improve overall survival rates) in patients with large tumors and/or spread to multiple lymph nodes.

    Remember that surgery (and radiation) are considered "local' treatment - treatment to the breast only.. They do nothing for cancer cells that might have started to travel elsewhere. For that, systemic (whole-body) treatment is needed - that is why even after mastectomy, endocrine therapy and chemotherapy may still be needed.

  12. I absolutely feel the same way! Bringing in those insurance companies in the picture will only create more stress. Good news for them as it is a potential avenue to get more profit but their lives are not the one at stake here. The patient's voice should be top priority. You take that away and its like taking one's freedom away. Having cancer is already at nightmare, they need not make it worse than that.

  13. Hi AnnMarie, I missed this earlier. Bravo to you for writing this one (and all the others too of course!). The thought of bringing in insurance companies here is nothing short of insulting. It's almost like there's some skewed assumption out there that women are choosing to remove their breasts without much thought. I don't know any woman who makes this kind of decision without considerable contemplation. Having said that, Dr. Attai's comments are perfect. The doctors should, of course, inform about ALL options available as well as risks and all that. That's their job. The final decisions, however, are up to each patient. Leave the insurance companies out of it! Thanks again.


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