News: DCIS shouldn't be called cancer?
Comments
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Beesie... I emphatically agree with you that by giving all types of DCIS a different name is wrong. I emphatically agree that some patients have difficulty grasping the seriousness of what they're dealing with and might dismiss aggressive care while others with favorable characteristics might insist on aggressive care. And, for anyone diagnosed with DCIS, as of now, we agree, no one knows what the true prognosis is for any woman diagnosed with DCIS. Sadly, all of these points are true with every woman diagnosed with invasive breast cancer as well.
However, further classification of DCIS is as necessary as it is for invasive breast cancer. Ultimately that will lead to better physical and emotional care. And then, just MAYBE, we won't have as many sisters making unwise treatment decisions.
When I was diagnosed with my rare type of breast cancer, I was warned by my team to ignore the data on traditional types of breast cancer because THEY DID NOT RELATE TO MY TYPE OF DISEASE. I was comforted in knowing that my type is classified under "favorable subtype histologies." The downside of having a rare favorable disease is that there isn't much clinical data to support the various types of treatments that the traditional invasive breast cancer patients are offered. Complicating matters, the little data that is out there for mucinous breast cancer tends to show that chemo is little help to this often slow growing tumor. And yet, despite being slow growing, the rarest of rare mucinous breast cancers are HER2 positive. Obviously, those patients require chemo and Herceptin. But with little clinical evidence, we have no idea how these sisters fare.
Where am I going with this? I think for patients like myself who have invasive tumors that are rare and classified as such, brings all of us closer to individualized care. In fact, since you were diagnosed, the Oncotype DX test that was introduced for invasive tumors has now be approved for DCIS patients. Now, DCIS patients have the ability to make a more informed treatment decision. With this one test patients can now be more easily classified and then studied...which ultimately will make treatment decisions a little easier for the next crop of patients.
Setting the bar high and wide and keeping the classification of DCIS so general until physicians and researchers know more,like you think is necessary, I think leaves more room for patients to make ill advised treatment decisions. Finding out that my invasive tumor was classified as "favorable" and getting a low Oncotype DX score gave me great confidence with choosing my treatment protocol. While I occasionally have doubts about whether or not I chose the right treatment plan and I sometimes worry about metastasis, most days I still have confidence despite no one being able to tell me that my disease won't recur.
With the Oncotype DX test approval for patients diagnosed with DCIS and the bold announcement to reclassify DCIS, I think we are going to see more patients making more confident treatment decisions despite being aware of the unknown.
And I think the best news about the Oncotype DX test for DCIS and reclassification is that future studies will provide us with more specific information on how to treat patients.
At the end of the day, will there still be some patients over and under treated? Without a doubt, yes! But that doesn't mean that we shouldn't try to create a new vocabulary that can give us a better understanding of disease.
I will close by repeating what I mentioned in an earlier post. Medicine is moving towards labeling diseases on spectrums. As I said earlier, Muscular Dystrophy describes more than 50 diseases. And within those diseases, there are further classifications including early and late onset. As researchers learn more, the spectrum expands because even within those classifications, the progression of the disorders are unique to each individual with no two given people alike!
The same is true for cancer. As we learn more about non-invasive and invasive disease, we will need to have a new vocabulary for the expanding spectrum for the classification of tumors. -
Thank you all so much for taking the time to post all this info... I am learning a lot from all of your posts... Hoping this will help me make a more informed decision when it comes time to pick what kind of surgery/ treatment...
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VR--The Oncotype test has much more limited utility for treatment of DCIS, as compared to IDC. They don't even use it at MSK for DCIS. It's only useful to determine if radiation is necessary, and my surgeon did not want to use it. She said it "might" be useful for a small subset of the DCIS population, but they still don't trust the scores for DCIS (don't feel the test is that reliable, and if one gets a borderline score, they are not sure what to do with it, so they just don't use it). In addition, the Chief of External Beam Radiation (who was my attending) stated that there was a sizeable risk of recurrence for even low grade DCIS, so they recommend radiation for most of that population also (unfortunately). The recurrences just take longer to emerge with the low grade, but there are still recurrences. In my personal situation, they and I didn't feel it was prudent to forego radiation, given the high grade, multifocal, comedo necrosis, large size, etc. Despite the new nomenclature (which I already endorsed--the idea of pre-invasive or pre-cancer, not IDLE--which almost sounds pejorative), I'm glad I did what I did.
About the mucinous bc, my mother had a locally advanced case of it (5 cm, several nodes involved, involvement near chest wall). So even "favorable" pathology shows evidence of progression. I'm glad she was treated aggressively and is doing well today.
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Ballet...my point is simple. With non-invasive AND invasive patients need to make wise, but often tough decisions without certainty. We need a specific vocabulary in this very non specific world of cancer. We can all argue the benefits of leaving the current classifications alone as more is learned. But whether or not we like the current language used to describe these diseases, that fact is, the vocabulary IS changing... perhaps too rapidly for some and not quick enough for others.
And Ballet, with respect to your mother, I'm truly happy that she has done well. According to the NCCN guidelines, chemo is recommended for tumors like hers. However the level if evidence for large tumors like hers is not as strong as it is for traditional breast cancers. Furthermore, there was a recent Japanese study that indicated that patients that had mucinous breast cancers and did NEO-adjuvant chemo, DID NOT see their tumors shrink, BUT they still did well! Mucinous BC is one heck of a rare disease! So we will never know if your mom did well because of the chemo or in spite of the disease! Bottom line is... it is nice to know she is having the upper hand of this beast! -
VR, the exact experience that you went through with your diagnosis is what I think should happen to women diagnosed with DCIS. You had a relatively non-threatening invasive cancer, and that was properly explained to you. Your doctor didn't pat you on the head and say, "oh, don't worry, it's not really cancer". Instead you were "warned by my team to ignore the data on traditional types of breast cancer because THEY DID NOT RELATE TO MY TYPE OF DISEASE. I was comforted in knowing that my type is classified under "favorable subtype histologies."" That's what needs to happen more with DCIS. The name of DCIS isn't the problem; the problem is the lack of adequate, accurate and personalized discussion about DCIS with patients who are diagnosed.
Your perspective on this is interesting to me because around this board, we usually see eye-to-eye on things. I think the difference here may be that you've spent most of your time on this board in the invasive cancer world, while I've spent most of my time in the DCIS world. In the invasive cancer world, we do see some women who come here saying "I refuse all treatment", but that seems to be pretty rare, particularly if refusing all treatment means not even having surgery. In the DCIS world, that's less rare. It's not common of course but whenever articles come out saying that DCIS should be considered a pre-cancer, we see a flood of women come to the board, newly diagnosed with DCIS, who say that they don't see any reason to have surgery specfically because they've read that DCIS is a pre-cancer. Even when this discussion isn't at the top of the news, there still are women who come here refusing all treatment (even surgery) because their doctor told them that DCIS is a pre-cancer, or because they read that in articles on-line. Despite the treatment recommendations of their doctors, they believe that they should be able to watch and wait and not have surgery unless and until the lesion develops into a "real" cancer. We see this particularly in situations where the area of DCIS is large and a MX is the recommended surgery. A MX for a pre-cancer? Seriously? And yet it's the women who medically require a MX for their DCIS who generally have the most aggressive and worrisome cases of DCIS, DCIS that really does need to be removed and treated, quickly.
Right now, with all DCIS classified as being "cancer", there's no question that some women with low risk diagnoses get scared by the word "cancer" and choose to have treatments that really aren't medically necessary. Sometimes they suffer the consequences of those treatments. This is the "over-treatment" that so concerns those who wrote the article this week.
Right now, with all the discussion about DCIS not really being cancer, there are also women with high risk diagnoses who believe that no treatment is necessary because DCIS is a pre-cancer. This is the "under-treatment" that we are seeing more and more, but it's too early to see the consequences of this, so no one has raised a red flag yet.
The medical community needs to find a way to address the first type of situation, patients who are so scared by their diagnosis that they choose to have unnecessary and potentially harmful treatments. Reclassifying all DCIS as an IDLE condition (which is the proposal today) might be helpful in this regard, but what it will also do is increase exponentially the number of women who fall into the second type of situation. Reducing over-treatment by creating a situation that leads to more under-treatment just makes no sense to me. With high grade aggressive DCIS, we are dealing with a diagnosis that can develop into a life-threatening condition if not adequately treated. Given the potential consequences, personally I think under-treatment is a more serious problem than over-treatment.
One last thing puzzles me. If the National Cancer Institute wanted to have an unbiased assessment of how to deal with the issue of low risk "cancers", why did they put Dr. Esserman in as the head of the group? Her position on this has been very public for years; there is nothing unbiased about her. She seems to have made it her life's work to have DCIS (and other low risk cancers) reclassified as non-cancers. Her position on the treatment of these low risk conditions is also very clear - they shouldn't be treated and they probably shouldn't even be diagnosed. She is not in the mainstream and her positions have not gained much support in the past. The article from this week is just a regurgitation of her previous articles; it's all opinion and supposition with no data or analysis. The direction that she wants to move things makes sense, but she is way over the cliff on this one.
And VR, that may be the other reason why we disagree here. You are looking at the proposal from the standpoint of knowing Dr. Brawley's feelings on these things. I am looking at the proposal from the standpoint of knowing Dr. Esserman's feelings on these things. It seems to me that Dr. Brawley wants to improve patient care and outcomes. It seems to me that Dr. Esserman wants to make a name for herself by spearheading changes in how DCIS is named and treated, regardless of what the research and data might say and regardless of the collateral damage.
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"We need a specific vocabulary in this very non specific world of cancer."
With DCIS, the specific vocabulary that is in use today is "pre-invasive cancer". That works well for me. It is different than "IDLE" or "pre-cancer", which sound like you don't have to do anything about it now. It is different than "non-invasive" cancer (which used to be the term used most often) which implies that it is a condition that will never become invasive. And it is different than "cancer", which generally strikes fear in people's hearts.
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...and with respect to the Oncotype DX test for DCIS... While it doesn't provide patients with a lot of info about the disease's potential progression, it does give patients more clues about treatment and that is the potential for a whole lot more info than patients received a few short years ago.
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Beesie...I think you nailed it when you mention that physicians need a more thoughtful discussion. I think the only way that we can get to agree is if unbiased physicians get together and come up with a better way for all physicians to communicate!
I respect what you say about fearing DCIS patients will under treat their disease if it is not communicated properly to them as well as striking fear in them if they hear the word "cancer," which is what happened to my neighbor! However, the similarities exist in the world of invasive cancer as well. I would love to stop this merry-go-round and I think the only way possible to do it is with a good vocabulary in the mouths of compassionate physicians. With that said, you and I are still going to be tearing our hair out of our heads when we see patients choosing treatments that are truly not in their best interests.
And I think that's probably why Dr. Easserman is so passionate about her opinion. Like Dr. Brawley, she is in the trenches and they see the cases that are over and under treated. I'm sure it's not pretty.
So maybe with this topic we'll just have to agree to disagree and both of us should live long lives to see who was ultimately right and who was wrong! -
Reading alot of this I have to agree that arguing about nomenclature misses the point. So much more important is what medical professionals COMMUNICATE to their patients. The name means nothing. There are people who freak out when they hear the words "PRE cancer". So what if you changed the name and called it something else, say "X". Doctors would still in their explanation of the diagnosis of "X" explain that it can sometimes but not always be a precursor to invasive cancer. They may explain that it may not become invasive, or that if it does it's low grade, and your invasive will be low grade, and very likely not kill you, yada yada, etc etc., but what difference would that make? Just hearing "pre cancer" will be alarming to nearly everyone who hears it. Changing a name is not going to make a difference. People will do what they want to do re treatment options. That won't change. However, not a single doctor will say that dcis can "never" become invasive cancer. Nor can they ever say that so called 'low grade' invasive cancer will "never" kill you. It seems to me that so long as they cannot say that, we cannot stop--nor should we want to stop--people who opt for surgery or mastectomy, for "more is less".
VR you said earlier "This watchful waiting is very expensive and time consuming!" It's a fair point. Watchful waiting, the alternative, IS expensive, and time consuming, not to mention emotionally trying for some people. These days, for me, I have adopted a 'more is less' thinking. This is what led me to go with a bmx for bc, even though surgeon suggested at most a single mast or lumpectomy.
However, a long long time ago (mentally and emotionally, but really just about 12 yrs ago) I thought "less is more". In fashion, accessories, AND surgeries!
Pre bc, I had been through YEARS of watchful waiting with my thyroid, only to go through two separate surgeries to remove the entire thing after a total of 9 years of 'watchful waiting'. The watchful waiting and two separate "partial thyroidectomy" surgeries were clearly, in hindsight, more expensive then one full thyroidectomy surgery, at the get go. It was, pre breast cancer, a small regret: not doing a full thyroidectomy at the start.
This past experience with my thyroid completely colored my pt of view from the beginning of my bc journey. I knew I could not deal with the monitoring, monitoring, monitoring, (as I would need MRIs in addition to mammograms etc as my bc was not palpable or visible on mammogram) both in time and expense for what I hoped was decades ahead of me (as a 47 yr old at the time of the decision).
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I would really be curious as to how many woman breast surgeons would follow watchful waiting for any kind of dcis. Really curious. I don't think any of them would, if they were being wholly honest with themselves. In fact, there would probably be as much 'over treatment' re bc includind all kinds of dcis among female breast surgeons and oncologists as reflected in the general population. Some would opt for bilateral mastectomies when there was no widespread cancer or aggressive dcis, others would opt for limited lumpectomies and radiation/chemo etc as recommended. I cannot imagine a case of any single one doing nothing other than watchful waiting! Let me know if you know of any who disprove this thesis!
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Jessica ... I doubt there is or will be much watchful waiting when it comes to DCIS for two reasons. One is fear of litigation on the part of physicians and two, the unknown of the possible progression of the disease.
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Here's the key part of the nyt article to me, linked at the beginning of this discussion, that I openly question:
"The advent of highly sensitive screening technology in recent years has increased the likelihood of finding these so-called incidentalomas — the name given to incidental findings detected during medical scans that most likely would never cause a problem. However, once doctors and patients are aware a lesion exists, they typically feel compelled to biopsy, treat and remove it, often at great physical and psychological pain and risk to the patient. The issue is often referred to as overdiagnosis, and the resulting unnecessary procedures to which patients are subjected are called overtreatment." [emphasis added]
You guys, or shall I say you ladies: so long as you are not subject to "great physical and psychological pain and risk", just what is wrong with overtreatment for what is most likely not (but remember, we cannot say certainly not!) a lifethreatening condition? Frankly, I felt like my repeated biopsies for my thyroid, along with numerous scans of it, and TWO separate ambulatory surgeries, all over a period of YEARS, not to mention the frequent visits to the endocrinologist for repeated jabbings at blood tests (someone who is getting thyroid medication constantly readjusted knows what I mean)l etc., subjected me to far more physical and pyschological risk and pain than a simple surgery at the beginning would have accomplished. I don't see why a lumpectomy, for example, for dcis, even a low grade, small dcis, is seen as 'overtreatment' vs 'watchful waiting.'
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VR: forget for a minute the malpractice side. The report is criticizing supposed over treatment. What is the overtreatment, frankly? Again, I believe that female breast oncologists and breast surgeons in the very same situation as some patients they are talking about, would never undergo watchful waiting. So i guess I just don't understand how and why any breast doctor would think a patient should watchfully wait dcis etc....they don't say in the report that is what they are suggesting people do, but I guess I just don't understand what the overtreatment is, given that no one knows for sure what cancer will go on to kill you if untreated. It's all very interesting, the variety of information re dcis, but it's the same point. Are you reassured to know that your low grade dcis is unlikely to become high grade invasive cancer, only possibly low-grade invasive and is unlikely to kill you? Oh, so now I'll just 'wait' and not do anything until it becomes invasive? OH, and even when it does become invasive, then I'll take my time and do a lumpectomy when my children are off in college, because it's so slow growing it won't kill me. I can wait a couple of years!
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Jessica...over treatment has many meanings. The simple meaning would include my neighbor who when she first heard that she had DCIS wanted a BMX and that was before she even had an MRI. It also refers to my 88 year old mother who is STILL encouraged to get annual mammograms despite if she ever needed surgery...she isn't a candidate because she was almost lost due to anesthesia while having a small procedure two years ago! I'm somewhere in the middle with respect to over treatment... Because of my breast cancer, I am now biopsied for everything! And I'm on track to take 10 years of endocrine therapy because as my medical oncologist has said to me, "With cancer, you never know!"
Over treatment can be translated into over screening and over kill procedures. It doesn't just happen in cancer world... Some one needs to explain to me why at age 88 my mom needs a statin when her body aches and older people may have memories from taking it! -
Overtreatment is a population-based concept, a finding in a study of a large group of cases that more people were treated than would have suffered the feared result. Unless medical techniques can allow doctors to determine which patients will progress to the undesirable outcome (invasive breast cancer) the concept is useless in guiding decisions for an individual patient. Numerous studies have looked at patient and disease factors to try to identify which patients are low risk and could settle for limited treatment. The results have led to the conclusion that they cannot reliably identify those patients. Age? Yes, older patients tend to have less aggressive tumors. Young patients tend to have more aggressive tumors, along with a longer life span in which recurrence could recur. And DCIS can recur many years after the initial diagnosis as DCIS or as IDC. Size of tumor? Yes, bigger is worse. Grade? Low grade DCIS cases generally show low recurrence rates with 5-year follow-up. But keep following those patients for 8-10 years and the recurrence rates become statistically the same as high grade. Margins? Probably the best indicator of recurrence, although the cutpoint is not clear. Other factors that are unusual and don't have enough cases to show up as statistically significant in research studies? Yes, there are a bunch of those, too.
Oncotype DCIS and other biomarkers? I do think a better answer will be found here to identify at least some patients who are very low risk, but the data is still limited and comes from a very favorable patient group. We don't really know how it applies if you would not have met the eligibility requirements. Confirmatory studies are still pending.
Although overtreatment is not a useful concept for individual decision-making the estimated risk level is. The best estimates are still just estimates and should be a range rather than a single number but they are important for the patient to make a decision. Part of the physician's job is to take all the information about a patient, make the best possible estimates of risks, and recommend the best treatment course, as well as other acceptable treatment options. Then it is up to the patient to make a decision based on that information. Deciding what level of risk is acceptable is the patient's choice, not the doctor's.
If I assume a particular patient with DCIS has a 30% risk of recurrence after lumpectomy alone with half of recurrences being IDC, a 15% risk of recurrence after lumpectomy + radiation therapy, a 9% risk of recurrence after lumpectomy + radiation therapy + tamoxifen, and a 2% risk of recurrence after mastectomy, that patient should be able to choose any of those treatment courses. With no treatment the risk of progression to IDC would be hard to guess but let's assume it is ~75% over a long time period. (Dr. Esserman assumes much lower but her assumption is not credible for DCIS cases as a whole.) As long as the patient understands the risks, she can choose to accept whatever risk level she wants, and someone else with the same levels of risk may well make a different choice.
The problem with Dr. Esserman's approach is that she has decided that women as a whole are too risk averse, so we should change the terminology and rules for screening so that they will not have the choices or will choose riskier approaches. That is not the physician's role or choice to make.
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"I don't see why a lumpectomy, for example, for dcis, even a low grade, small dcis, is seen as 'overtreatment' vs 'watchful waiting.'I don't see why a lumpectomy, for example, for dcis, even a low grade, small dcis, is seen as 'overtreatment' vs 'watchful waiting.'"
I agree. People have colonoscopies so that pre-cancerous polyps can be removed and a diagnosis of cancer can be avoided. People have suspicious skin lesions removed so that they can avoid the possible development of skin cancer. Why is breast cancer different? If a pre-invasive condition, i.e. DCIS, is found, why wouldn't it be removed rather than wait until it develops into invasive cancer?
Yet here is what Dr. Esserman says: "If it doesn't look like high-grade DCIS, we should leave it alone. We would eliminate two thirds of all biopsies if we did," Dr. Esserman said. In other words, let's not even make the diagnosis. That way, the patient won't have to decide what to do. The medical community will decide for them, and the decision will be do to nothing.
And here is what the report released on Monday proposes: "Strategies to reduce detection of indolent disease include reducing low-yield diagnostic evaluations appropriately, reducing frequency of screening examinations, focusing screening on high-risk populations, raising thresholds for recall and biopsy, and testing the safety and efficacy of risk-based screening approaches to improve selection of patients for cancer screening."
So it's not just a name change that is being suggested; hand-in-hand with that, it is being proposed that screenings and biopsies be reduced. This will result in fewer diagnoses, which means that more DCIS will be left in the breast. Since we know that current screening techniques can't distinguish between ADH and low grade DCIS and high grade DCIS (or even whether some IDC might already be present), without doubt this means that some of what is left in women's breasts will be serious and will develop into invasive cancer before it is removed. While for most women this might just mean some additional tests and treatments - perhaps chemo and Herceptin when it would not otherwise have been necessary - for a small number of women, this will mean death.
Is subjecting patients to unnecessary tests and treatments (and the risk of death) because they were diagnosed and treated later than they could have been any better than subjecting patients to unnecessary treatments because they were diagnosed too early? Isn't it actually worse to get the diagnosis later?
When we have the ability to screen more precisely and accurately, and when we can better identify low risk lesions from a high risk lesions, then by all means, let's do this. Until then, it's foolhardy. And that's why I think that Dr. Esserman has a personal mission and simply doesn't care about the collateral damage.
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Great discussion about an important topic!
(((The Mods)))
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Beesie...that's a great question with regard to getting diagnosed later...that question leads to the mammography screening debate.... Which is not going to get settled any time soon. The controversy, as you know relates to exactly how many lives are actually saved via SCREENING mammograms? Not DIAGNOSTIC mammograms, which all agree saves many lives... The core debate circles around whether finding a potentially lethal tumor during screening mammograms actually saves as many lives as believed. Or, does it just make a person a patient sooner and will still die sooner regardless of treatment.
I will NOT debate that issue here because there is no right or wrong answer. Even Dr. Weiss has debated the issue in The Wall Street Journal with biostatistician, DR. H. Gilbert Welch.
Good question, but no good answer.. Just part of cancer world's merry-go-round! And if the esteemed cancer professionals can't agree, then it makes sense that none of us can agree either.... -
Well, this whole news story and debate arrived at a prescient time for me. Yesterday, I was waiting the result of a second biopsy to determine the size of my DCIS for surgical planning. Today, it was found to be invasive. Surgeon believes it emerged from my grade 2 DCIS. My routine mammo in June led to a diagnostic mammo that almost didn't get flagged (BIRADS 4b by a hair, according to the radiologist).
Whether it is called cancer or not, DCIS is NOT normal, and is potentially dangerous. -
Beesie...my understanding with respect to colonoscopies finding pre-cancerous lesions is that it IS very different from finding DCIS. I think you might want to look that one up...
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H. Gilbert Welch is not a statistician, he is a MD with a MPH degree (masters degree in public health, not statistics/biostatistics).
Screening tests are based on level of evidence. A paper that describes this approach can be found here:
https://secureweb.mcgill.ca/cancerepi/sites/mcgill.ca.cancerepi/files/CaDetPrev-26-350.pdfand the NCI website:
http://www.cancer.gov/cancertopics/pdq/screening/levels-of-evidence/HealthProfessional/page2
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Ahhh....Here's more info regarding the proposed changes and they discuss the differences with respect to colonoscopies:
http://www.ucsf.edu/news/2013/07/107731/major-changes-urged-cancer-screening-and-treatment
"Cancer screening should have three important missions, the authors write: To detect disease that would ultimately harm the patient; to uncover tumors that benefit from intervention; and to detect disease that is more likely to be cured or better treated when spotted early...."
"...Optimal screening frequency depends on a cancer’s growth rate. If a cancer is fast growing, screening is less likely to be effective. “If a cancer is slow growing but progressive, with a long latency and a precancerous lesion, screening is ideal and less frequent screening (eg.10 years for colonoscopy) may be effective,” the authors said.
The recommendations include:
- Recognize that screening will identify indolent cancers.
- Change terminology and omit the word “cancer” from premalignant/indolent conditions;
- Convene a multidisciplinary body to revise the current taxonomy of cancer and to create reclassification criteria for indolent conditions;
- Create observational registries for lesions with low potential for malignancy – generate the data to provide patients and their doctors “with confidence to select less invasive interventions;”
- Develop, validate and adopt molecular diagnostic tools that identify indolent or low-risk lesions;
- Mitigate overdiagnosis: appropriately reduce frequency of screening exams while focusing on high-risk populations, and raise the threshold for patients being recalled for re-testing and biopsy."
"
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Thank you BITD....you are correct....Dr. Welch works with biostatisticians to understand the data and the two other authors, also physicians, who are associated with his book lead Dartmouth's "Healthy Skepticism":
http://tdi.dartmouth.edu/initiatives/research/healthy-skepticism
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until a suitable biomarker(s) is found that can separate out who is being over-treated, current guidelines in the name, and treatment of early stage breast and DCIS will remain the same. Suitable means proven in a large, randomized, prospective trial - level 1 evidence.
The same is true for early prostate cancer, and stage II (pMMR, t3) colon cancer. Nobody wants to be the patient, or the clinician, who "guesses" wrong.
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Great article BITD...."....However,
evidence-based medicine is far from being an exact science.
No matter how much of the evidence may come from RCTs,
a healthy dose of controversy will always exist when it
comes to making sense of information on cancer control and
prevention."
I think that sums it up!
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BITD....the only problem with Level 1 evidence is that that bar is set very high....Without a doubt we would all like to have it when we make treatment choices....but in the "real world" sometimes that's not the case. I know with mucinous breast cancer the NCCN recommendations are at the level of "2B." That's not a comforting place to be.... And I agree with you that we need more data to tell us with more certainty which treatments are effective.
I think, going forward we are going to see fewer randomized blinded trials to collect data from. As Dr. Topol points out in his book the Creative Destruction of Medicine, they are too long and too expensive and often don't give us enough information to make an informed choice. That's why, we're going to need more genetic based SHORTER trials. And ultimately we're going to arrive at a new vocabulary to describe the inherent differences and similiarities between the many different types of lesions. Interestingly, my understanding is that we are going to be moving towards understanding more diseases NOT based on the organs where the tumors originate, but by the inherient biological properties of the cells. So going forward we are going to see targeted drugs that will work on multiple organs.....
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There are already several targeted therapies being used in practice, Herceptin being one (anti-HER2 therapy used for both breast and stomach cancers), and Tarceva (EGFR inihbitor for lung and pancreatic cancer), level 1 evidence was used for both of these drugs. There were plenty of trials that assessed both of these drugs in many organ sites, and so far, the evidence has only been strong enough to warrent two indications for each.
Regardless of the type of target - genomic, proteomic - or the type of evidence - prognostic (does it separate out low from high risk) or predictive (should a specific therapy be used) - the bar for the level of evidence will remain high. The orginal studies that demonstrate the biologic evidence are the first step in a very long process that goes from cell lines/mice to clinical trials. In order to be adopted into practice, the evidence will necessarily be required to show both efficacy and lack of harm.
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BITD... I'm not saying that we should lower the level of evidence. I'm pointing out that the NCCN guidelines include multiple levels of evidence for better or worse. I wish there was level 1 evidence for mucinous breast cancer. Unfortunately, that's not the case.
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...and with all of the so called "evidence".... I hate to start controversy... But following the Vioxx debacle ( which Topol uncovered ), there was a promise made by the pharmaceutical companies that there would be more transparency with respect to publishing both good and bad data. Harvard trained physician John Abramson does a great job of explaining how pharma cooked the Vioxx data in his book, Overdosed America. Chapter one for anyone who is interested in the debacle. I think the government is doing a better job at getting more data exposed. But I still think there isn't enough transparency. So, I am left still suspicious about "evidence." My medical oncologist knows how I think and knows whenever he proposes a treatment for me, it has to pass the "sniff" test.
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"We're not there yet." Dr Norton of MSKCC on pbs discussing this.
http://www.pbs.org/newshour/bb/health/july-dec13/cancer_07-30.html
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- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team