Thursday, July 16, 2015

CLARIFICATION NEEDED: MASTECTOMY AND METASTASIS. INPUT PLEASE!

My goal is to always speak in ways that all may hear. That, however, does not mean I will sit on the sidelines if something is off kilter. Slightly left or right of center? To each their own. To either extreme and my surly claws are out.

Two things. Or as is generally the case, likely half a dozen, but at this moment as I begin typing, it's just two things. First, I need some clarification with a quote that appeared in an article in the Wall Street Journal. I would like someone to elaborate and by someone, I mean someone who can point me to the evidence based research to back a statement that appeared in the Wall Street Journal in an article entitled:

The Double Mastectomy Rebellion

I'm going to bypass the title. Rebellious? Defiant? I think I may, in the age of shared decision making and patient centricity and encouraging patients to play an active role with their clinicians, take offense at the title but this debate has been raging for quite some time. A prominent surgeon wrote an op-ed in a medical journal suggesting that insurance companies refuse to pay for any mastectomy that the surgeon deems medically not necessary. I wrote about that in August of 2013. I was a bit irritated at the paternalistic tone in the article.

The Wall Street Journal took two years to pick up the story and decided to highlight this rebellion. Except for many of us, it's not a rebellion. It's a decision. It's a choice. It's something we feel strongly about doing. We are not being defiant as the title would suggest. We are asking questions, educating ourselves and participating in the informed decision making process. Rather than reinvent the wheel, I'd suggest you click back to my August, 2013 post. It hits the high notes.

Besides the choice of headline, I'd really like some of my doctor/researcher friends to point me to the studies to show me this is an accurate, scientifically studied statement and not just some sort of observational or anecdotal message that was thrown into the article. It jumped off the page at me because frankly, this did cross my mind as I was making my own decision in 2006.

Can someone tell me if this is true? And, if indeed it is true, point me to the research please.

"Meanwhile, doctors say, returning cancer is much more likely to spread or metastasize elsewhere in the body, such as bones, the liver or the brain."

I'd really like to know where this statement came from. Was it actually the doctors? Was it the interpretation of the author (and if so, why are the lungs left out... do your homework)? Is it a scare tactic to stop the defiant women from the ongoing rebellion? OR, is it scientifically true?

If it happens to be the latter of those statements, it would seem to me, the rebellion would be over.

Is this opinion, chatter or is it based on some form of evidence?

Weigh in, please. I could use some answers. And so could the rest of us.

I said two things earlier, didn't I? Well, the second thing can wait. If you head over to my personal Facebook page, you will see what that was all about. My page, like my life, is completely open for all to see so we don't need to be "friends" for you to read about the fact that I'm so over the use of the prevention word and I'm tired of complaining about promoting breast cancer awareness by using the body parts that I've long since had tossed into that medical waste field.


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15 comments:

  1. I am so confused by this ongoing debate about mastectomy vs. lumpectomy. And, like you, this article feels paternalistic to me, as well. I was faced w/invasive lobular carcinoma. There was no evidence of disease in my right, unaffected breast, but I chose to have a bilateral mastectomy. When the biopsy of my right breast came back it said there was evidence of precancerous tissue, which to me meant that sometime in the future, the right breast would have also have to be removed and I might have to go through the whole chemo, surgery experience all over again. So in my mind it was the right decision. What I can't understand is why the medical community can't understand why more women are electing for bilateral mastectomy. It's like sitting with a time bomb in your breast, the uncertainty is quite debilitating.And, like you, I question if the risk of cancer in bones, liver and brain mentioned in the article above is actually scientifically accurate after a bilateral. I've never been able to get to the bottom of this.

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    1. Wrote a whole response.... and my ipad isn't signed into my google account. UGH.

      My brain hurts to try to rewrite. Just know I had ILC too.. same exact thing happened with me.

      AM

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  2. I am a doctor and I was treated for breast cancer that I found myself and was invisible on mammo. I am a radiologist and I read the studies on women with breast cancer and I see how terrified they are of recurrence. So I made the decision to go for bilateral mastectomy for my stage 1 cancer. I, too, would like to know the research to back this up and will let you know if I uncover anything.

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  3. Happy to weigh in. The article headline was horrible but it's an important issue to discuss. The rates of mastectomy for early stage breast cancer, as well as the rates of contralateral prophylactic mastectomy (removal of a healthy breast) have been increasing since 2004. We have 25+ years of followup on the landmark NSABP B06 trial which demonstrated no difference in long term survival for patients undergoing mastectomy vs. lumpectomy. We have over 30 years of follow up on the NSABP B04 trial which showed no difference in long term survival in patients undergoing a Halsted radical mastectomy vs. modified radical [radical means removal of the chest wall muscle and an aggressive lymph node removal; modified radical means no removal of muscle and what's known as a level I/II axillary dissection]. The overriding theme is more surgery is not better.

    There are 2 issues we deal with in terms of breast cancer - local disease and systemic. Local is the breast, systemic is the rest of the body, or metastatic disease. Treatment has local or systemic benefit. Surgery and radiation provide local control - they remove the primary tumor, and the goal is to reduce local recurrence. We used to think more aggressive surgery would help keep the cancer from spreading, but this is not true. Surgery and radiation are necessary, but it's tumor biology and response to systemic treatment (tamoxifen, aromatase inhibitors, chemotherapy) that dictate whether or not a tumor will metastasize.

    The controversy over increasing mastectomy rates goes back to the fact that more surgery won't improve survival. There is no question that there is a slightly higher local recurrence rate from lumpectomy compared to mastectomy, but it is sometimes <5%. Mastectomy is not 100% - there is about a 1-3% risk of local recurrence after mastectomy. When you consider that there can be a 20-40% complication rate from mastectomy, the potential benefits often don't outweigh the risks. Bilateral mastectomy carries a higher complication rate compared to unilateral (one side) mastectomy.

    There are many valid reasons why women may choose mastectomy over lumpectomy, or even bilateral mastectomy. Sometimes it is a medical recommendation - multicentric cancer (more than one quadrant of the breast), inflammatory breast cancer, genetic (BRCA and others) mutation just to name a few. There are also very valid non-medical reasons for making this choice. None of us during our lives make decisions in a vacuum - most everything we do is colored by past experiences. So if you watched your mother or best friend go through breast cancer treatment and she had terrible problems with radiation, or her cancer came back in the breast after lumpectomy, or she developed a new cancer in the other breast a few years later - these all influence your decision making and we can't undo those memories. No amount of me discussing how low the rate of these issues are will change a woman's mind, and that's ok. To me the important thing is that women are carefully educated regarding their different options, including the complication rates of procedures they are considering. I do find many women think a mastectomy gives them some degree of control over the disease "I'm being as aggressive as I can". But the reality is the big picture - metastasis and overall survival - are not affected by the type of surgery performed.

    What I see in my practice is not women "defying" their doctors. They carefully weigh their options. They get additional options and make sure they are as educated as possible. And then they make the decision that they think is in their best interest, often with the support of their physicians. Many of the physicians quoted in the article (myself included) stressed that patient choice and patient autonomy are extremely important. But it's also our responsibility to make sure that patients are aware of the facts, so that these decisions are not being made only based on fear.

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    1. Thank you, Dr. Attai for this very thoughtful and well-explained reply. I knew I could count on you! And I forgot to mention that you are in that article!!
      ~AnneMarie

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    2. I question a 20-40% complication rate from mastectomy. That seems very high. Perhaps you mean with reconstruction?
      Those are two completely separate procedures even if done at the same time. Some women may want just the mastectomy and no reconstruction. A friend of mine who is a family practice doc just had the bilateral mastectomy 2 weeks ago with no plans for reconstruction. After decades of watching her patients suffer the agony of continued screening for recurrence and the complications of radiation, she opted for the bilateral for her stage 1 cancer in a single breast. How much more educated can you get than her or myself ( a radiologist who knows the limitations of breast cancer screening).

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    3. You are correct - the 20-40% complication rate quoted is for mastectomy with reconstruction. Some of the potential complications include bleeding, infection, unplanned implant removal, flap necrosis, and nipple necrosis. Mastectomy without reconstruction has a much lower (but no surgery has a 0%) complication rate.

      As I stated previously, many of the women I've encountered have taken the time to become educated regarding the medical facts. This is why I continue to support a woman's choice.

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  4. Just want to point out the difference in tone between the headline and the actual story in the WSJ. Headlines generally are written by the editors after the story is turned in. The headline is provocative. The story though, shows no such defiance. Rather we see statements like, "She decided..." and "She doesn't plan to follow..."

    I see that Deanna is quoted in the article and she nicely sums up the writer's point: “We are no longer practicing medicine in a paternalistic fashion, and at the end of the day, it is the patient’s decision,” says Dr. Deanna Attai, president of the American Society of Breast Surgeons and a surgeon affiliated with UCLA Health.

    But elsewhere in the article the writer says something that is disturbing to me: "The doctor-patient relationship has changed, and physicians are reluctant to tell women what they should or should not do." Yes, I want to be in charge but I also want my doctors to honestly consult with me, to tell me what they truly think. To not do so, to be afraid to speak up, would be awful.

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  5. Idelle I agree with you. Just because the doctor-patient relationship has changed (in my opinion for the better) doesn't mean that physicians are afraid to give patients their opinion on the best treatment option. I don't think the writer was speaking for the majority of physicians. Our job is still to provide information and guidance.

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  6. As a physician who has also had breast cancer, let me say that I believe your intuitive anger and distrust are not misplaced. This is an issue that, unfortunately, is a lot about money. The concept of "wasted dollars" in medicine is not a new one, and is now being highlighted by the intrusion of the governmental oversight associated with Obamacare, and the accompanying changes in insurance coverages. Health care costs are being evaluated with a magnifying glass. Bilateral mastectomies are large surgeries and the plastic surgical reconstructive procedures bear a hefty price tag. The "medical necessity" of most of the bilateral mastectomies with plastic reconstructions is in question, because the reality is that the morbidity and mortality statistics show no benefit, compared to the more conservative lumpectomy surgical treatments. (Individual women with specific genetic vulnerabilities like BRCA, or women with specific types of tumors or tumor locations, or who also have abnormalities in the second breast, are the exceptions to this issue of medical necessity.) Thus, with a lack of medical necessity, some doctors (and insurance company executives) think it is reasonable to quit covering this procedure for most women with breast cancer, unless they are among the group with the exceptions.

    This is very short-sighted. The costs associated with very close radiologic screening of remaining breasts can be very high. Women who have had breast cancer are at a higher risk than other women to get a new breast cancer. Women who have had a previous breast cancer treated with a lumpectomy will have scars in that breast from the surgery and the radiation treatments. Often breasts with these types of scars will require screening with MRI's. These women will ultimately require many more new breast biopsies than other women, with associated pain and anxiety and cost. Thus, the upfront costs of the more extensive surgery at the time of diagnosis, must be weighed against the subsequent (and lifelong) costs of ongoing surveillance for a new breast cancer.


    In the past, many women elected for the more conservative route, to avoid the recovery from the larger surgeries, as well as the known complications and significant disfigurement. But in recent years, the surgical techniques have improved vastly, and the cosmetic results are quite good. Thus, more women today with breast cancer are choosing the bilateral mastectomy for their surgical treatment, to obtain symmetrical and cosmetically improved results, and to avoid having to be concerned about any residual breast tissue. Some doctors (and some insurance company executives and some governmental officials) would like to save costs by limiting the availability of the bilateral mastectomy with bilateral reconstructive procedures for most women with breast cancer, if paid by insurance.

    In this time of tremendous "cost cutting" in health care, often times there are individuals who will look toward specific types of patients (ie ----WOMEN) to find savings for the system, as a whole. I would suggest that those same doctors and executives who are very concerned about “medical necessity” might want to evaluate the cost of providing items such as Viagra (used by their male patients), first.

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  7. I am interested in finding out if it is possible for a woman to get breast cancer if she has no breasts? I am referring to someone who did a double mastectomy BEFORE the cancer ever occurred. In short, is it possible for Angelina to still get breast cancer in, for example, the breast skin or chest wall.

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    1. After a double mastectomy the breast tissue between the skin and chest wall is gone. If there are residual breast tissue cells that remain adjacent to the remaining skin or chest wall (either from the breast ducts or from the lobular/fatty tissue surrounding the ducts) then, in theory, those cells can be subject to developing cancer after the mastectomy. But since the numbers of any remaining breast cells after such surgery must be very, very small.....the percentage of new breast cancers in such a person - even if they are genetically vulnerable to getting breast cancer - must be extremely small.

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  8. What do you know about cervical cancer?

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