Monday, August 5, 2013


The buzz has been over an EDITORIAL.  Repeat, an editorial... in other words, an opinion.  It was the opinion of the author(s).  Based upon a brainstorming meeting facilitated by the NCI, published in the Journal of the American Medical Association, it appears the working group included ten doctors plus the three authors who chaired the panel.

Do we lose the word cancer in favor of less scary words?  How do we handle overtreatment?  Specific to the breast cancer community, it's all about DCIS.  I'm not going to throw my two cents into this discussion.  It's been quite ably addressed in a number of publications and on several blogs.  Those diagnosed with DCIS are faced with agonizing decisions.  The odds aren't good enough to ignore the diagnosis.

Bottom line, there could have, there might have been a patient included on that NCI assembled working group.  We don't bite.  We are respectful.  We know we bring a specific point of view and we aren't trying to be doctors. We learn by listening but it must be a two way street.  We may have brought some value, some perspective to the table.

"Physicians, patients, and the general public must recognize that overdiagnosis is common and occurs more frequently with screening."

Yes.  We are well aware.  The patient voice..... Where was it?  We, as advocates, carry the message into our communities.

And, for what it's worth, the NIH provided partial funding for this study which was published in March.  The study looked at next generation sequencing as A Powerful Tool for the Discovery of Molecular Markers in Breast DCIS.  It's Medscape, you need a login, but here's the bottom line, direct from the publication:

"Despite intensive research, robust biomarkers that would predict the risk of progression or recurrence in DCIS have not been discovered.......there is an unmet need to identify important markers in DCIS and that the study of biomarkers for DCIS is still in its infancy."

Until DCIS can be identified with a better certainty, nothing changes.  It's all about having a conversation.  The risk/reward conversation.

And that is the message I bring to the breast cancer community.

Talk to your doctor.

Ask for an explanation of the words in the pathology report.

In fact, it might not be a bad idea to have the slides looked at under the microscope of a second pathologist.


  1. I agree a patient's voice is needed in most discussions but I think the point is that if it is a condition that can easily be cured, why does it have to be a cancer in a medical term? There are many conditions which can lead to cancer but are not labeled as cancer. For example, Barrett's esophagus is a precancerous condition but is not a cancer. It puts the patient at a higher risk of esophageal cancer. So if DCIS for example was renamed to something that did not have the word cancer in it and was considered as something that is a precancerous condition but not cancer.

    Then the patients are not on the cancer roller coaster when they are diagnosed with something that puts them at a higher risk of getting cancer but does not put them on the cancer roller coaster. Am I making sense?

    1. Hi, Caroline... first question, how are you feeling....

      Yes, you are making sense!

      The only problem I have is science has yet to discover which DCIS lesions will become cancerous and which will never do any harm. Since 30% of DCIS will become invasive cancer according to all the research I've read, I don't like those "odds."

      LCIS is still "lobular carcinoma in situ" and it's accepted as only a risk factor, not requiring any treatment even with the word carcinoma in the name.

      I think it's most important for any patient to understand their pathology report.... was the DCIS low grade, is watchful waiting an option, family history, location of the DCIS?

      Also, important to note, DCIS can and does metastasize. The problem is that DCIS can be nothing or it will become cancer at which point, there is no sure cure. I hope that research evolves quickly and more definitive answers can be provided. For me, it's all about the research....


    2. I happen to agree with you, Caroline. For me, I think of DCIS like colon polyps. I get them, and was told by my surgeon that they have to be removed because it is not a matter of "if" they become cancer, it's a matter of "when" if they are not removed.

      With a 30% chance of becoming cancer (which is much better odds than colon polyps), DCIS tumors should be removed. But remove the whole breast? I have not had my colon removed.

    3. I have to re-read the paper. I think they are trying to lean towards "watchful waiting" for DCIS which I feel should be dictated by a personal choice and not by guidelines that will ultimately be adopted by insurance companies which will then lead to insurance companies dictating our choices.

      Also, some DCIS does result in the need for removing the whole breast. I know people who have had DCIS removed without clean margins and additional surgery was required. I have heard of DCIS right on the chest wall above the heart. In both of those cases, the breast was removed. There are people with DCIS who have other significant risk factors (not BRCA mutations but other factors).

      This certainly punctuates the point. There is no one single solution. They are proposing a change in wording without any new methods to provide information to guide decisions. It feels a little like putting the cart before the horse.

  2. Frustrating. Mammograms before 50? When there is no risk and no symptoms? What is the risk of the radiation over time? And as for DCIS, agonizing treatment for something that may (and I repeat MAY) never cause a problem? We need research dollars and clear information and informed consumers. And protection for consumers to make the choice that seems right to them. And we need patients on these panels to raise these issues. We're not stupid, just impacted by these decisions.
    AL in the Midwest

    1. I have to disagree. I was diagnosed with triple-negative breast cancer at the age of 43. No family history of bc. No family history of cancer. I went from age 42 - you're fine, to Stage I bc in 12 months. If I had waited until I knew there was a problem I'd be dead.

    2. Again, the most important compononent is protection for us as consumers to make the choice that seems right. We individuals make the choice, not guidelines, and certainly not Insurance companies. That's all I am seeking.
      AL in the Midwest

    3. Just my .02 about it all: We always have a choice on whether or not to have mammograms. I mean, I always have (I don't have them & I'm going to be 57yo in a few days). There was some type of insurance option that my husband could choose, that had certain yearly "requirements" to be fulfilled in order to have coverage & naturally he did not pick that one. So maybe that's a case where a woman would not have a choice regarding mammograms? I don't know.

      If you are interested in watching a short but way-way-powerful 10 minutes video of Dr. Helen Caldicott, please watch here: You might get a bit of a hint of why we have cancer in our world.

      My 14yo daughter (who will be 16yo in a week) had a cerebral hemorrhage in May, 2012, and open brain surgery in August, 2012. She had multiple (gawd... multiple!!!!) x-rays, CT scans, MRIs, etc. during this whole process... and will continue to have a dye-contrast MRI every year for the next 4 years. The pediatric neurosurgeons have **no doubt** that at some point in our daughter's life, because of all the radiation she had, she *will* develop a cancerous brain tumor. But she would have died without it so... the lesser of the two evils was chosen. She might be 50 before she develops it but develop it she more than likely will.

      X-rays on your teeth every year (especially on children... gawd!!!), x-rays on your breasts every year... just not a good thing, according to Dr. Caldicott & many others. By the way, Dr. Caldicott was nominated for a Nobel Peace Prize... by Dr. Linus Pauling.

      Many opinions exist on all this. This just happens to be mine. I respect every opinion here. XOXOXOXO

      Peace~ Andrea

    4. Yes, to all three of you and THANK you for being respectful of views that may differ from your own.

      I feel like I broken record if I say this but I suppose it simply underscores what so many people may not realize:

      There's no right way or wrong way... there's just the way that works for each of us.

      Whether it's diagnostic tools or treatment options, we must carefully weigh everything we know before making a decision and then, we can make an informed decision. The one that is right for us

      ANDREA.... I am so sorry about what you are going through with your daughter. That is upsetting... I am thankful she is okay... and I'm HOPEFUL that research will have evolved tremendously before the radiation exposure causes additional health problems. Dr. Caldicott is on a great NIH website...."Changing the Face of Medicine" ....

  3. Hi AM - With a panel of 13 people, one of them might have been a cancer survivor. Statistically speaking. But it would have been even better if YOU were there. As always, thanks for everything!

  4. Excellent post and points, as always. To (hopefully) provide some clarification for a point made above, IF you are to undergo surgery for DCIS (as opposed to watchful waiting), it is recommended that clear margins be obtained. And sometimes, due to extent of disease, mastectomy is then indicated. It used to be thought that DCIS always required mastectomy but current recommendations are similar for invasive cancer - if the disease can be removed with an "acceptable cosmetic result", lumpectomy (with clear margins) is sufficient. Mastectomy is a better option in some patients.

    The bigger decision of course is do you get screened, and if something is detected do you get treated? These are complicated decisions and we do not have one-size-fits all answers. Extensive discussion with your physician is needed to help each patient come up with a plan that works best for HER.

    And yes, 2nd opinions on pathology are possible and are common. You just have to ask.


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