Looks like a war is about to break out!!
http://www.nytimes.com/2015/08/21/health/breast-ca...
Looks like for many, we are over treating DCIS.......same old, different day! Maybe this time there will be a meaningful discussion.....I'm not holding my breath....but just MAYBE a few thoughtful researchers might take up this torch and cut to chase and lead us out of this muddy pit.....Not sure how everyone here feels about this topic. I just think many of us are tired of the debate and wish with all the money spent on research and treatments, that the medical community wasn't so divided on how best to treat ALL of us!
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Kay...since Dr. Brawley wrote, How We Do Harm, there has been little traction within the medical establishment with respect to over treatment. Until we have a meaningful discussion, there will never be those clinical trials that will require those brave participating patients. IMHO, too many patients and clinicians have been drinking the Kool Aid. I dream of a politician one day saying, "Screening mammograms save lives, BUT NOT AS MANY LIVES AS PREVIOUSLY BELIEVED." And, would it be too much to ask that a handful of radiologists come forward and agree with that statement, as well?
All women, not just us, the chosen ones who have had a cancer diagnosis, deserve better.....
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My IDC had a 5mm center of DCIS for total tumor size 1.8cm. Maybe if it had been removed sooner it would not have spread to one sentinel node and I could have been spared chemo........
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I listened to this interview with Dr Esserman ( author of the editorial to the JAMA article) on the CBC radio this evening if anyone is interested hearing what is being presented by the media to a Canadian audience.
http://www.cbc.ca/news/health/stage-0-breast-cancer-surgically-overtreated-in-u-s-1.3197809
Kathy -
I recently read Dr. Welch's latest book, as well as his previous book and highly recommend reading both his books along with Dr. Brawley's book, How We Do Harm. That said, Drs Welch and Brawley face an uphill battle....BUT....I think the cat has been let out of the bag...the evidence, while not the gold standard IS telling us that we know less, but even more about cancer than previously believed. More, with respect to genomics and risk factors, but less and less about how varieties of cancers need to be treated.... Again, I wish more doctors, especially image specialists would consider that we need to reboot this idea about screening mammography saving so many lives. It is pretty clear by now, that that assumption is wrong. And, with this observation, we are still aggressively treating cancers that might not need such aggressive care.
CP....I wish there was some way to say with certainty that your treatment was warranted and you weren't overtreated. Everyone has to make treatment decisions that are right for themselves. However, honestly, until we live long lives and die from something else, many of us will never know how effective our treatments were....it is really a conundrum....
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Am I misreading the article? What was their chance of invasive cancer before treatment? How does this indicate under- or overtreatment? What am I missing?
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Sorry the link above didn't turn out to be the actual telephone interview with Dr Esserman but I think I will leave it.
Voracious, regarding mammography, I took part in the breast screening studies in the mid 1980's and so have closely followed the study results especially over the very small findings detectable only by screening mammography. In Canada, like most of the world, screening mammography over age 50 is at a two year interval, when I was 60 so well past menopause I decided to do that one better and upped it to every three years for myself, or more, and when the routine screen in 2009 did find a nonpalpable something and I was heading to the surgeon appointment to get my results and assuming DCIS I was thinking doing active surveillance. Ok so it was a surprise ILC and a positive node instead.
Anyway Dr. Esserman in the telephone interview mentioned publishing an article in 2009 with another researcher about DCIS and comparing breast and prostate screenings, so those findings were probably in the news and so at the top of my radar then too.
Kathy
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Kathy: thank you for chiming in, as one of the women in the study.
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No not that study queenmomcat. Voracious brought up rebooting the idea of screening mammography saving lives. I was part of a clinical trial In the mid 1980's to see if screening mammography added any benefit in addition to a professional manual exam. At the five year mark for the age 40 to 50 group there was no additional benefit to screening mammography. IOW finding a cancer earlier before it could be felt didn't lower the number deaths, which really was a surprise to just about everyone. This was at the five year mark, by 15 years followup there was a small benefit.
The DCIS study data started 1988- when breast screening using mammography started finding more cases of DCIS, before this time in situ disease was not as common.
Kathy -
Kathy,
Dr Esserman is my doctor, I love her and she's really great but even if they rename DCIS so they don't officially call it cancer anymore, any of us who remebver when it was called cancer, will still think of it that way. I totally agree that whoever decides not to be treated when diagnosed with DCIS or whatever it's called then would have to be braver than me, I couldn't do it.
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http://www.amazon.com/The-Big-Squeeze-Political-Co...
For those who are interested in how the screening mammography issue moved from being a scientific one to a political debate, one should read the above linked book by radiologist Handel Reynolds. All of 96 pages, the book packs a punch. Sadly, he passed a few months after the book was published.
Dr. Reynolds' conclusion is that as long as the screening mammography debate stays as a political issue, there will never be a scientific study comparing groups. That's one of the reasons why we have this retrospective DCIS study. And we all know that studies that are historically based are not the same as a clinical trial comparing two groups.
Kathy, I am extremely familiar with the Canadian health care system and its delivery of medicine because my maternal side of my family is Canadian. Furthermore, one of my maternal cousins was recently diagnosed with a small and very nasty breast cancer. She received aggressive care at the Princess Margaret Hospital in Toronto. By comparison, my tumor was much larger and yet, because it had a much more favorable qualities, my treatment was a walk in the park!
Finally, with respect to the courageous patients who choose to be randomized for any clinical trial, from the bottom of my heart I say, "Thank you.". The DH participates in a clinical trial for his orphan illness and I can't begin to tell any of you what that means to us and the researchers and clinicians who treat him.....
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As someone who had 2 LXs barely 2 months ago and is in the midst of rads for DCIS, this whole controversy drives me nuts. I am very, very frustrated by stories like the Aug 19 NYT story (there was a slightly better story on Aug 21). Several friends and a few colleagues have forwarded the link to me already, and I can tell that a few of them are thinking that I overreacted to my diagnosis.
I am so disappointed that the NYT didn't do a better job of pointing out that we don't have RELIABLE methods of determining WHICH women are being over-treated yet. I know because I looked very, very hard for them, and I couldn't find them. All I found were some untested hypotheses, and I wasn't willing to bet my health on them.
Some background, for those who have the time to read a long story:
After results from a stereotactic core biopsy showed (1) 3.5 mm small area of DCIS and (2) a second area of ADH in another quadrant, my doctors here in Chicago recommended either LX plus rads or MX. I was skeptical. It sounded like overkill to me for something that calls itself Stage 0 and isn't even sure it should be called cancer in the first place.
Based on reading about the work of Drs Esserman, Hwang, and others, I pushed back on the recommendations and asked about watchful waiting instead. (Which really seemed to freak out my doctors here, by the way.) Having lived in San Francisco for over 20 years, I looked into going back there for treatment at UCSF. Meanwhile, I got a second opinion on the pathology from Johns Hopkins.
The second opinion saw a suspicion of microinvasion, so that pushed me over the edge on the decision to have surgery. I also knew that the only way to be sure about the diagnosis was to excise both lesions, so I went forward with surgery. Even though I had LXs in 2 separate quadrants, my surgeon here at Northwestern did a fabulous job. She got clean margins and things are looking great so far, though it will take a while longer for everything to settle down.
I was one of the fortunate ones. My final path report after surgery showed no signs of invasion. It also showed (1) no remaining DCIS in the first area, but (2) the second area contained 2.5 mm of DCIS along with ADH. Some people believe that DCIS can turn into IDC and others do not; I don't have the scientific knowledge necessary to reach an informed opinion on the issue, but I'm glad it's gone.
I was highly skeptical about rads as well. Even before this latest study, other studies had noted that rads doesn't affect mortality when combined with LX in DCIS patients. But it does reduce the likelihood of recurrence, and that's important to me. My RO estimated my individualized risk of recurrence without rads at a rate that was just too high for me to feel comfortable skipping it; so did the MSKCC calculator. I don't want to go through more surgery if I can avoid it. I especially want to avoid the stress, fear, and onerous treatments associated with invasive cancers.
Overall, there is so much that we don't know about DCIS. We are not yet at the stage where we can identify which women with DCIS can forgo treatment safely. Believe me, I would have been happy to skip it.
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"Instead of mammography, which finds many lesions that will never spread, women need tests that find disease that truly needs to be treated."
This is the critical statement. At this time our medical specialists CANNOT provide this type of pre-cancer screening for patients.
This same topic goes round and round for DCIS regarding to treat or not (more confusion for us). The medical gods still have not determined which patients need treatment while others can be monitored. IMO at this time, this is a personal decision that each patient must make with her doctor as to her personal risk factors and breast abnormalities. The fact that "some" DCIS patients will have a 7% risk of later dying from breast cancer confirms that certain patients require some type of treatment. If you are a patient who falls into this 7% population then you are not being over treated. These articles go along with the same ones which say women should not start mammograms until age 50. Hmmm - tell that to all the women here dx with breast cancer in their 30's and 40's and a few even younger.
VR - I certainly don't mean to be rude in my reply to you posting these articles. I'm just very tired after years of seeing the same topics getting regurgitated without meaningful progress and guidance for patients. I've decided to only focus on research which shows a clear benefit for the patients. If it only gets published as research and is not funded for clinical trials - it is useless to us. Then 10-15 years goes by and another researcher recycles it again.
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cp.....like you, I am extremely frustrated by this topic. You are not being rude at all! As October roles around in but a few short weeks, my fuse will be lit with respect to all the breast cancer awareness and misunderstanding that will fuel "Race for the Cure."
What I would rather see happen, as October closes, is a truly meaningful understanding that the present approach to screening for breast cancer is lacking. And the divisiveness within the oncology medical establishment.....that needs to be understood and worked on because all of us, including our future sisters deserve better from these professionals.
CP....I was STUNNED when I read Medscape's Q&A with Dr.Bleyer. Reading it, I realized the divisiveness is even worse than I had feared!
So? Why bother dredging up this controversy over and over again? First and foremost is that we need to correct the profound ignorance that people have about what cancer really is! I used to think, because I was a voracious reader, that I was fairly intelligent and enlightened about the topic of cancer. However, once I became an oncology patient, I realized how really dumb I was! As I enlightened myself, the angrier and angrier I became!
With this newly published retrospective DCIS study, I was truly gobsmacked! If I were diagnosed with DCIS tomorrow, I wouldn't have a clue what to do!
But....what truly bothers me the most is the lack of a civilized dialogue about the implications and meaningfulness of these types of studies. I agree with you CP that we should focus on treatments and better screening tools. That said, because the issue has become so political, there has been no attention paid to the cost of population based screening here in the United States. And no politician has questioned why most countries endorse 2 year screening while here in the US women are invited to be screened annually beginning at age 40. No doubt, women need to discuss with their doctors what and when the ideal type of screening they need, but that decision should be based on facts and not fear and certainly not based on fantasy!
And, speaking of fantasy...imagine if all of us, here in the US, came to our senses and agreed that women of average risk of breast cancer could have population based screening at 2 year intervals, perhaps the money saved on imperfect imaging could be earmarked towards finding better screening methods and/or finding a cure.....wouldn't that be wonderful?
Forgive me CP....I am just soooo fed up and disappointed.....
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http://www.barrons.com/articles/cancer-the-new-cur...
VR - this week Baron's Financial magazine is all about Cancer. Follow the money trail for who/where the research is being done.
YES! It is getting near that time for us to don our "pink" deflector suits. May the force be with you.
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cp...I had to Google the title of the article to gain full access....interesting.....Don't you find it fascinating how cells work??? .....and how they can go haywire? I do hope this area of research leads to a rainbow.....
And, come October, may the force be with all of us! 😇
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Cp, I almost blew my beverage out of my nose. "May the force be with you"....Ha! Brilliant! Think I might have to sit on my hands too! You rock.
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Interestingly, I had a co-worker ask me about getting a mammography because she is at that age. She didn't want to because she was concerned about radiation exposure, and the bigger issue of is the medical establishment over-treating, without knowing that much about breast cancer. It saddened me to say the reason mammos are pushed is to catch BC early because if it metastasizes, cancer is not curable, and, IMO, too much emphasis has been focused on early screening vs. figuring out how to cure metastatic breast cancer.
ChicagoReader, when I was dx 2 years ago w/IDC, I couldn't help notice how many women dx w/DCIS chose not to take your route but instead went for a bmx. The "C" word is so terrifying, I am afraid too many of our sisters are making tx decisions out of fear. I had that same reaction--cut off the healthy breast too (lx was not an option for the breast with cancer), but after looking at the statistics, agreed w/my BS that I did not need to do that/that it wasn't going to reduce my cancer risk. (His words, "I am more concerned about a recurrence than you getting a primary cancer in the healthy breast" stays with me.) It's a touchy subject to discuss, and am concerned just my opinion on this thread will piss some people off.
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Regarding the Barron's Financial report on Curing Cancer, I'll attempt to summarize here the areas of research. There was a life cycle diagram of the multiple targets in immuno - oncology where research is focused. Here are the steps for how the body's immune system responds to cancer:
1) Tumor releases cancer cell antigens into circulation which get picked up by surveillance type cells.
2) These cells migrate to a lymph node and present the cancer antigen to white blood cells called T-lymphocytes.
3) These T-cells proliferate and migrate back through the blood vessels
4) to the tumor(s)
5) T-cells recognize the cancer cells
6) with antibodies plus other immune components to fit the cancer antigen. (antigen/ antibody response like a lock/key)
7) Now the T-cells can attack the cancer tumor with cell-busting chemical weapons - this creates new antigen fragments and restarts the cycle. Each step is controlled by counterbalancing signals that turn up or down the immune cell activities.
Here are the companies and the area of their research focus in the cancer cycle.
2) AstraZeneca, Celidex, Merck, Roche
3) Agenus, AstraZeneca, Bristol-Myers(BMS), Celldex, Incyte, Merck, Pfizer, Roche
5) Roche, Lilly
6) Bluebird/Celgene, Juno, Novartis, Roche
7) AstraZenca, BMS, Celgene, Five Prime, Incyte, Merck, NewLink, Pfizer, Regeneron, Roche
The three top companies are BMS, Merck, Roche, AstraZeneca, and Pfizer. These new treatments could create a $30 BILLION market for drug companies. So far, BMS is the I-O pioneer however Merck has the largest research budget of $7 billion which is 60% larger than BMS.
This is only the first phase of I-O drugs being explored to free the immune system to adapt to fight cancer shifts (mutations/resistance). Next will be cocktails as combinations of I-O and chemo.
This Barron's magazine can be purchased this week at your supermarket news stand.
leggo - glad I made you laugh!
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ReneeinOH: I also noticed many women with my DX who opted for BMX and even though I made a different choice, I can't say I fault them. The medical community hasn't done a good job of providing us with the info we need to decide how to treat DCIS. For example, I met with an MO who asked me if I would be having a BMX. When I asked whether she saw a reason why that would be appropriate in my case, she said, "It's a choice some women make." I didn't find that to be helpful in the least.
All the doctors I consulted in Chicago would have been fine if I had chosen MX, BMX, or LX + rads. But most of them would barely discuss the possibility of skipping rads, and a few stopped taking me seriously because I asked about watchful waiting. I can only imagine the questions they've been getting from patients who were diagnosed since the NYT article was published
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Until they have it figured out, I'm all for over treatment when it comes to cancer. When I was told I had DCIS, some told me, "don't worry, that's not even cancer, it's pre-cancer". Well, i was talked out of MX by family because theythought I was overreacting. Was going to do the LX/rads route. After the LX, an invasive tumor was discovered that the mammo never picked up. Even though I was told I got clear margins, I chose to not get rads and went with BMX. Sure enough, more DCIS found.
I just hope that insurance companies don't decide that DCIS is not cancer. I feel my over treatment has saved me from chemo and I am grateful.
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ChicagoReader, totally agree and had similar experience with first BS I saw. Because of my IDC dx, watching not an option; I can only imagine how hard it would be to find a dr. comfortable with monitoring. There certainly is a protocol established, and probably drs. are afraid of liability.
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ReneeinOH, in many cases monitoring is not reliable enough and does not guarantee progression would be caught early. Take my case as an example. I was diagnosed with DCIS/IDC in the right breast and was told I did not have to remove the left breast because it could be monitored by frequent imaging. MRI done before surgery did not show any problems in the left breast. I gave it a lot of thought and opted for BMX. Guess what, they found very extensive LCIS in the left breast that MRI and other imaging missed. In the right, they found LCIS too - in addition to DCIS and IDC and positive nodes that MRI did not show.
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Muska: Situations like yours are just one reason why the NYT article makes me crazy. The article doesn't distinguish between women who are diagnosed based on biopsy versus surgical pathology, and thus it doesn't acknowledge the risk that an initial diagnosis can change to something more significant.
That may explain why the article makes it seem like monitoring should be the default for DCIS, yet I had a hard time finding doctors who were willing to discuss it. The doctors I consulted may have seen too many cases where the diagnosis changed significantly after surgery. Or they may have been worrying about liability. Or maybe both.
As kayb pointed out, before we can accurately evaluate watchful waiting, we need studies that tell us what happens when women actually do that instead of seek treatment. Until then, it's speculation.
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Chicago, do you mind me asking who is treating you? I am in the south burbs and am just curious
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just to clarify....the authors of the retrospective DCIS study explained that they do NOT expect to change the present DCIS standard of care. That said, they believe their study lends credence to the need for a clinical trial that would hopefully tell us who needs aggressive treatment and who doesn't.
Also, the study reflects the growing understanding that population based mammography screening often finds very early treatable cancers and once again confirms that it doesn't do a good job at finding aggressive disease.
BTW...screening mammography missed my cousin's nasty tumor AND missed my rare, indolent tumor as well.
CP...great job of disecting the Barron's article! Should give many sisters hope! I want to add that the folks at the Rare Breast Cancer lab at Sloan Kettering discovered how the bad cells and good cells talk to each other....that seems to confirm what the Barron's article explains....I think the researchers are on the verge of discovering a better understanding of how cells behave...hopefully that understanding will lead to better preventative and treatment options!💞💞💞
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