According to the New York Times today, reporting on new research on Ductal Carcinoma in Situ (DCIS) "it now appears that treatment may make no difference in their outcomes. Patients with this condition had close to the same likelihood of dying of breast cancer as women in the general population, and the few who died did so despite treatment, not for lack of it, researchers reported Thursday in JAMA Oncology."

NY Times article: http://tinyurl.com/pa7j43d

JAMA article: http://oncology.jamanetwork.com/article.aspx?articleid=2427491

Listen, I don't want to say I told you so or anything but merely thinking about this issue has been enough to raise my blood pressure ever since I had breast cancer in 2009. That experience has shown me that it is absolutely criminal to tell any woman that she has breast cancer when there was no evidence that DCIS would ever develop into cancer. Calling it "pre-cancer" or "Stage 0 cancer" doesn't prevent women from going through absolute hell: disrupting their emotional lives, their work, their relationships, their feelings about their bodies, causing them to go through painful, disfiguring treatment with many negative side effects, and giving them a fear that never really goes away.

From the NY Times article:

Diagnoses of D.C.I.S., involving abnormal cells confined to the milk ducts of the breast, have soared in recent decades. They now account for as much as a quarter of cancer diagnoses made with mammography, as radiologists find smaller and smaller lesions. But the new data on outcomes raises provocative questions: Is D.C.I.S. cancer, a precursor to the disease or just a risk factor for some women? Is there any reason for most patients with the diagnosis to receive brutal therapies? If treatment does not make a difference, should women even be told they have the condition?


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This is the first I've heard of a serious research project around DCIS. Last I checked, the state of the research was that no study had been performed on woman diagnosed with DCIS who had declined treatment and that autopsies performed on women (for other reasons and not in any systematic way to research DCIS) seemed to indicate that about 15 percent of women died *with* DCIS, but not *of* DCIS.

http://www.breastcancerdeadline2020.org/breast-cancer-information/specific-issues-in-breast-cancer/dcis/

From The National Center for Biotechnology Information:
At 10 years following DCIS diagnosis, overall breast cancer mortality consistently is less than 2 percent.295–297 In official publications, the SEER registries report 0 percent breast cancer mortality after 5 years, reflecting the belief that there is no mortality from DCIS unless there is an invasive recurrence or new invasive primary tumor, in which case the mortality would be attributed to the recurrence or new tumor.4 Ernster5 estimates 0.7 percent breast cancer mortality within 5 years and 1.9 percent within 10 years for women diagnosed between 1984 and 1989. Ernster also reports that breast cancer mortality declined significantly between 1978–1983 and 1984–1989 (10 year mortality at 10 years 3.4 percent versus 1.9 percent).

http://www.ncbi.nlm.nih.gov/books/NBK32570/



As the article indicates, this is probably just the beginning of more heated discussions but I gave my PCP fair warning a couple of years ago that if I get a DCIS diagnosis I'll just smile and wave and keep it moving.
~ ~ ~
All meetings end in separation
All acquisition ends in dispersion
All life ends in death
- The Buddha

|\_/|
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Every hundred years, all new people

I had cancer in 09. It was a palpable lump that was invasive ductal carcinoma. I felt it. My doctor felt it. The mammogram operator felt it. But no matter what she did, she couldn't get the mammogram to see it. It was biopsied with an ultrasound guided needle biopsy, and ultimately an MRI was performed in which a second lesion was found that was not detected by the mammogram either, nor by our fingers.

So all of that started my mistrust of the mammogram.

Then I learned more and more about the cycle of Komen Foundation getting donations to "raise awareness" (i.e., not fund research or help pay for treatment for uninsured women or under-served communities), and the "awareness" being raised was specifically to have mammograms, and the more mammograms that are performed the more DCIS is discovered, which is by definition always stage 0 and which some people would say is not correctly identified as cancer, but which is only detectable by mammogram. So the more mammograms that are performed, the more DCIS is found that would not otherwise be diagnosed and the more women are identified as "cancer survivors." And you bet, they had surgery and radiation and dog knows what in order to cure the DCIS. But they also had fear and heartbreak and anxiety and relationship pressure and so on and so forth.

But that creates a statistic that makes mammograms look effective. Those women would not have died from DCIS anyway, and the women who did not have mammograms but did get breast cancer and die of it were all other types of cancer. So of course the mammograms look like they're doing something essential, when in fact they may be much less valuable than Komen Foundation wants you to believe. Because if you believe that they're valuable, then you too will want to "raise awareness" and you will donate to the Komen Foundation. And your money will go to fund more fundraising efforts or, in other words, to pay their salaries.

Let me donate to the American Cancer Society or something - anything - other than that organization. Ugh.

And I still get my mammograms because I am the world's most compliant patient but I never expect them to be a reasonable diagnostic tool.


~ ~ ~
All meetings end in separation
All acquisition ends in dispersion
All life ends in death
- The Buddha

|\_/|
='_'=

Every hundred years, all new people

Thanks for posting this. I might have to slide this the way of a couple of women in my life. People really have to be on their game with doctors and hospitals. The system isn't perfect and if you're not proactive it could be the difference between life and death

Just IMO though.

When I was offered tamoxifen after my radiation, I asked my medical oncologist what the risk for ovarian cancer was on tamoxifen vs. my risk of recurrence of breast cancer. Turns out that the risk of ovarian cancer (which is notoriously difficult to diagnose) was slightly higher. I was like uh this is a no-brainer right? And my doc said, well, some women want to eradicate as much breast cancer risk as possible.

There's a lot of over-treatment of prostate cancer, too. Not in young guys--young guy prostate cancer is virulent. But it's said in the medical community that a majority of older men die with prostate cancer but not of it. Based on how slowly it moves, it seems like the treatment is worse than the disease.

~ ~ ~
All meetings end in separation
All acquisition ends in dispersion
All life ends in death
- The Buddha

|\_/|
='_'=

Every hundred years, all new people

She felt a mass on her left breast, I felt it as well. the doc and everyone else involved felt it. From everything I've ever read, in retrospect it was a perfect candidate for a DCIS "stage 0 cancer" diagnosis.

The doc told my wife it was nothing to worry about. It wasn't cancer or anything like that. He did say it was abnormal cells in the milk ducts, but that "things like this happen to many women" and that it would eventually go away.

8 years later and he was right. The mass is no longer there.

I can't imagine the number of docs that see stuff like this and only see dollar signs from all the treatments and whatnot instead of being honest with their patients.


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"Where was the peace when we were getting shot? Where's the peace when we were getting laid out?
Where is the peace when we are in the back of ambulances? Where is the peace then?
They don't want to call for peace then.

I can tell you that when I felt the lump that turned out to be breast cancer, I knew immediately that it was different. That's the best thing about self-exams, tbh -- you know your breast texture and know when something is off.

I'm glad to hear that your wife is doing well and no one put her through the fucking wringer.


~ ~ ~
All meetings end in separation
All acquisition ends in dispersion
All life ends in death
- The Buddha

|\_/|
='_'=

Every hundred years, all new people

damn.

that's good info.

fuck you.

i remember being young and sitting in the hospital with my mother after she had a hysterectomy. and over the years she has bemoaned the fact whenever a doctors solution has been to cut on her. some knee problems are flaring up again and she is really not in the mood to get cut on again...

used to be radical mastectomy, period, end of story.

~ ~ ~
All meetings end in separation
All acquisition ends in dispersion
All life ends in death
- The Buddha

|\_/|
='_'=

Every hundred years, all new people

what maxims can soothe pain that we've already had to endure...its like being cassandra, by the time someone listens its too late

I had a lumpectomy and radiation, no chemo or hormonal therapy.




~ ~ ~
All meetings end in separation
All acquisition ends in dispersion
All life ends in death
- The Buddha

|\_/|
='_'=

Every hundred years, all new people

i mean im sorry for any instance of pain or displeasure or mild annoyance that you ahve ever experienced. even in utero. or if you farted in your sleep and you ate corn chips earlier as an indulgent before bed snack and it stank real bad and only your subconscious recoiled in horror.

if god were real id beat the dog shit out of him for the tiniest pain you have ever had to endure. for context im a really nice guy and i dont want to hurt anyone. but jesus christ himself would say 'shit im glad that wasnt me.'

Not to make things all awkward but.. wow.

The JAMA authors don't make any explicit recommendations but their findings actually kind of support breast cancer screening and preventive treatments. Especially for black women and women younger than 35. They've simply exposed opportunities for improvement.

Kolata has taken just one of the study findings (that adjuvant radiotherapy did not significantly reduce 10-yr breast cancer-specific mortality among lumpectomy recipients) and concluded somehow that preventive treatments don't impact breast cancer outcomes.. which is not what the JAMA authors suggest at all lol. She also concludes that women with DCIS diagnosis die at the same rate as women in the general population (wrong), misquotes the age risk factor as being under 40 (wrong), fails to mention that adjuvant radiotherapy reduced the likelihood of invasive cancer development by almost half, and seems to have missed the overall purpose of the study.

A hazard ratio (HR) is a 'number of events per unit time' comparison between groups. In this study the events are deaths, so the HR are a comparison of mortality rates (i.e. 1 = both groups have same # deaths per unit time and >1 = one group has more deaths per unit time.) In the results, the JAMA authors clearly state that Black women had a mortality rate 2.5x HIGHER than non-hispanic white women in the cohort, even after adjusting for other factors like income, treatment and tumor features. And the small percentage of women diagnosed with DCIS before age 35 had a mortality rate 2.1x higher than women aged 35+, and approximately 17x HIGHER than similarly aged women in the general population. So where did Kolata get this 'same likelihood of dying' point from??

Imho the focus of the JAMA paper isn't really treatment, or even detection. It's efficacy. The current standard for breast cancer screening is to look at DCIS as a cancer precursor. The JAMA analysis sought to update 10-year and 20-year mortality rate estimates for women diagnosed with DCIS, and characterize additional factors that increase/decrease breast cancer-specific mortality risk. They identified variations in mortality according to age, race, and receptor sensitivity, as well as an unexpectedly high mortality rate among DCIS diagnosed women who didn't even go on to develop invasive cancer (which screening ultimately aims to prevent). This led the JAMA authors to conclude that there are nuances with respect to DCIS prognostics, treatments and mortality risk that have not been integrated into practice. Kolata... seems to have read a different paper or something lol.


Anyway, glad I read the JAMA article before the NYT one. I like this take from the same JAMA issue, much better commentary:

http://oncology.jamanetwork.com/article.aspx?articleid=2427488

And in other news.. I just learned today that, apparently, Kolata has reported erroneously on medical matters before and the NYT had to issue a lengthy correction lol:

http://ahrp.org/ny-times-corrects-gina-kolata-re-alzheimers/

From the Results:

"In an adjusted analysis, DCIS before age 35 years was associated with an HR for mortality of 2.16 (95% CI, 1.54-3.02; P < .001) compared with all women who received a diagnosis at an older age. A relatively high mortality rate for stage 0 breast cancer was also seen for black women. The unadjusted HR for black women (vs non-Hispanic white women) was 2.55 (95% CI, 2.17-3.01; P < .001), and this risk ratio was not attenuated when income, treatment, and tumor features were taken into consideration. It is improbable that black women had inferior survival because of less frequent
screening or inadequate treatment. All cases were stage 0 at diagnosis, and the majority of these are diagnosed through mammography. The proportions of black and white women treated with mastectomy and radiotherapy were similar (eTable 5 in the Supplement), the effect was seen in women in all treatment groups"

"The finding of greatest clinical importance was that prevention of ipsilateral invasive recurrence did not prevent death from breast cancer."

"..if DCIS were truly a (noninvasive) precursor of breast cancer, then a woman with DCIS should not die of breast cancer without first experiencing an invasive breast cancer (ipsilateral or contralateral), and the prevention of an invasive recurrence should prevent her death from breast cancer. Surprisingly, the majority of women with DCIS in the cohort who died of breast cancer did not experience an invasive in-breast recurrence (ipsilateral or contralateral) prior to death (54.1%)."


From the Discussion:

"It is often stated that DCIS is a preinvasive neoplastic lesion that is not lethal in itself.The results of the present study suggest that this interpretation should be revisited. Cases of DCIS have more in common with small invasive cancers than previously thought. The current clinical paradigm focuses on risk factors for progression from DCIS to local (invasive) recurrence, and to study the impact of various prognostic factors or to compare treatments, invasive recurrence is the primary clinical end point." "..but in the DCIS population, it is proposed that the test be used to identify patients who are at high risk for invasive recurrence (and not for death)."

And the authors' conclusions (Did Kolata even read this part..?):

"Some cases of DCIS have an inherent potential for distant metastatic spread. It is therefore appropriate to consider these as de facto breast cancers and not as preinvasive markers predictive of a subsequent invasive cancer. The outcome of breast cancer mortality for DCIS patients is of importance in itself and potential treatments that affect mortality are deserving of study."

I appreciate the corrections & clarification.


~ ~ ~
All meetings end in separation
All acquisition ends in dispersion
All life ends in death
- The Buddha

|\_/|
='_'=

Every hundred years, all new people