DCIS and Possible Overtreatment
Take Carcinoma Out of DCIS and Ease Off Treatment, "Medscape Medical News, January 21, 2010 http://www.medscape.com/viewarticle/715586
January 21, 2010 - The term carcinoma in the phrase ductal carcinoma in situ (DCIS) is misleading and troubling and ought to be dropped, or at least its dropping should be considered, suggest some recent editorials in major journals.
Both editorials also suggest that DCIS is a possible candidate for management by active surveillance, a treatment strategy of growing importance in prostate cancer in which low-risk patients do not receive radiotherapy or surgery unless they progress to higher risk.
However, unlike in prostate cancer, where active surveillance and a revised sense of what is acceptable management in low-risk patients have been gaining strength for a number of years at multiple North American centers, these potential changes for DCIS are still at an early stage. And, at this point, much of the push for DCIS changes - proposed and actual - appears to be emanating from 1 center in particular, the University of California in San Francisco (UCSF).
The prospect of changing terminology and treatment options in DCIS is complicated in the United States by what 2 different experts described as "hysteria" surrounding breast cancer.
Nevertheless, investigators at UCSF have gone ahead and are investigating what has been called "an important first step in the direction" of active surveillance for DCIS.
| Dr. Laura Esserman (courtesy of University of California, San Francisco) |
The UCSF pilot study involves 40 women with estrogen-receptor-positiveDCIS who received hormonal therapy for 3 months before surgery.The outcomes include change in tumor volume during this period and the identification of cellular components that are predictive of clinical response to therapy.
From preliminary results from 23 women (BMC Cancer. 2009;9:285), the UCSF investigators concluded that "further work is needed to identify which women may be the best candidates for such treatment for DCIS and whether best responders may safely avoid surgical intervention."
We should be demanding change.
However, the pilot study is a step in the direction of active surveillance, because the investigators' "ultimate goal is to identifynonsurgical means of treatment to prevent DCIS progression toinvasive cancer, as pointed out in an editorial in the Journal of the National Cancer Institute (2008;100:228-229).
Regardless of the final findings of this pilot study, Laura Esserman, MD, MBA, professor of surgery and radiology at UCSF and an investigator in the study, thinks the time is now to discuss a change in the approach to DCIS. "We should be demanding change," she told Medscape Oncology.
One Editorial, 1 Forceful Call for Change
Dr. Esserman, who is also director of the Carol Franc Buck Breast Care Center at UCSF, recently made a forceful call for change in the naming and management of minimal-risk cancers and conditions, including DCIS, in an essay that she cowrote with colleagues for the Journal of the American Medical Association (JAMA. 2009;302:1685-1692).
Minimal-risk lesions should not be called cancer
"Minimal-risk lesions should not be called cancer," they write.
The JAMA editorial received widespread media coverage after the chief medical officer of the American Cancer Society made controversial remarks about breast and prostate cancer screening related to the editorial.
Lost in the media swirl was much of the substance of Dr. Esserman's essay. In it, she and her coauthors propose another term for DCIS and other low-risk lesions.
"A more appropriate term, such asindolent lesions of epithelial origin (IDLE) tumors, would helpfocus on systematically studying how to reduce or eliminatetherapeutic interventions while achieving a good outcome," they write.
"Methods exist to identifylow- and high-risk cancers. Tests for prognosis andpredictionof breast cancer are available and provide betterdiscriminatory information than clinical features alone," write Dr. Esserman and colleagues.
With DCIS, the "bulk of what we find is not high grade" Dr. Esserman explained to Medscape Oncology in an interview. She noted that only high-grade DCIS is likely to progress to invasive breast cancer.
If it doesn't look like high-grade DCIS, we should leave it alone.
"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.
She also said that currently "there are sufficient data to stop and rethink the entire approach to DCIS."
Less than 5% of DCIS turns out to be "something else," including invasive cancer, said Dr. Esserman. Because a vast amount of DCIS is overtreated, a new approach to management is required. This has historical precedent, she said. "It's the story of every medical intervention - you treat a condition to the maximum extent and then you must re-evaluate your approach."
James Olson, PhD, distinguished professor of history at Sam Houston State University in Huntsville, Texas, and author of Making Cancer History: The University of Texas M.D. Anderson Cancer Center (Johns Hopkins University Press, 2009), corroborated Dr. Esserman's comments with regard to cancer.
"A key dynamic in the history of cancer treatment has been steady increases in the aggressiveness of treatments in the search for a cure, until a plateau is reached in terms of survival rates, after which there has been a search for less aggressive therapies while preserving existing survival rates," he told Medscape Oncology.
DCIS Was Rare Before Mammography
In the case of DCIS, there is a lack of convincing data that early treatment reduces mortality, Dr. Esserman said. Furthermore, finding DCIS has not led to a decrease in invasive breast cancer rates, she added.
"There are now 60,000 new cases a year of DCIS in the United States. But we haven't seen any drop in invasive cancers, despite treatment of DCIS as if it were early cancer," she explained.
In arguing for a change of approach to DCIS, Dr. Esserman said that screening for precancerous tissue works in some other cancers - it has led to a decrease in cervical cancer - but evidently not in breast cancer.
The burgeoning problem of DCIS is a result of mammography screening, said Dr. Esserman. In the days before widespread mammography, DCIS was rare. In the United States, DCIS incidence has risen from 1.87 per 100,000 in 1973 to 1975 to 32.5 in 2004, according to a recent report published online January 13 in the Journal of the National Cancer Institute by Beth Virnig, PhD, and colleagues. Dr. Virnig is professor of public health at the University of Minnesota School of Public Health in Minneapolis.
Dr. Esserman asked a basic question about breast cancer screening: "Is the purpose of mammography screening to look for DCIS? No," she answered.
"Maybe we shouldn't try so hard to find it - particularly low- and intermediate-grade DCIS. We need to take them out of the screening agenda," she added.
A Second Editorial, Less Forceful
Another call for removing the term carcinoma from DCIScomes from Carmen Allegra, MD, chief of hematology and oncology at the Shands Cancer Center of University of Florida in Gainesville.
Writing in a commentary also published online January 13 in the Journal of the National Cancer Institute, Dr. Allegra says that "strong consideration" should be given to changing the phrase DCIS to eliminate the "anxiety-producing" term carcinoma.
Dr. Allegra also writes that, with improved risk stratification, a watchful-waiting-type approach might be a good strategy for some women with DCIS, a subset "who can be monitored after biopsy in lieu of surgery or other therapies."
Dr. Allegra's proposals are especially notable because they appear in her commentary about a recent national DCIS conference. Dr. Allegra was chair of the conference - the State of the Science Conference on the Diagnosis and Management of DCIS - which was sponsored by the National Cancer Institute and National Institutes of Health.
| Dr. Ann Partridge (courtesy of Sam Ogden) |
Ann Partridge, MD, MPH, from the Dana-Farber Cancer Institute in Boston, Massachusetts, who was approached for an independent comment, agrees that the term DCIS is "confusing." Dr. Partridge is the lead author of a study that indicated that women treated for DCIS greatly overestimate the likelihood of recurrence and their risk for invasive breast cancer (J Natl Cancer Inst. 2008;100:243-251).
"Cancer implies that it can spread and be uncontrolled and kill you," she told Medscape Oncology.
" 'This is not a life-threatening problem' - that's the first thing I tell patients," she said.
Dr. Partridge agreed that DCIS is overtreated, but she noted that there is uncertainty about which patients are at highest risk of progressing to invasive breast cancer. "There are ways to risk-stratify, but they aren't great," she said.
Hysteria and Breast Cancer
Until better prognostic and predictive markers come along, overtreatment of DCIS continues. Reports that patients with DCIS are increasingly choosing bilateral mastectomy as their treatment may be the "major clinical dilemma in DCIS today," notes a recent commentary in the Journal of Clinical Oncology (2009;27:5303-5305), as reported by Medscape Oncology.
There's a hysteria around breast cancer.
The extremism that sometimes comes into play in DCIS treatment decision making is a "cultural problem," said Dr. Partridge. "There's a hysteria around breast cancer," she added.
That "hysteria" is one of the main reasons that the strategy of active surveillance, now advancing in prostate cancer, is currently not a viable option for DCIS, said Dr. Esserman.
However, Dr. Partridge noted that men, in general, have more to potentially lose from adverse effects with radical treatments for low-risk prostate cancer than women do with the treatment for DCIS. "There is a big difference between incontinence and impotence and [removing] a piece of breast or a even whole breast," she observed. Thus men, as a group, may be more willing to watch and wait for a time to see if their condition worsens, she suggested.
What do you think?
ETA:Here is an interesting article I found.
Breakthrough Method Predicts Risk of Invasive Breast Cancer
"For the first time, scientists have discovered a way to predict whether women with ductal carcinoma in situ (DCIS) -- the most common form of non-invasive breast cancer -- are at risk of developing more invasive tumors in later years." http://www.sciencedaily.com/releases/2010/04/100428173335.htm
Oncotype DX Breast Cancer Test: Now for DCIS Too
Oncotype DX for DCIS Test: http://www.oncotypedx.com/en-US/Breast/HealthcareProfessional/DCIS.aspx
The Oncotype DX DCIS test is now available from Genomic Health. www.genomichealth.com/.
Comments
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I was Dx'd with DCIS, and I definitely feel as if I was overtreated. The radiation treatment was really pushed on me, despite having a 2.4 mm "tumor" encapsulated in my duct. My DCIS was completely removed during the stereotactic biopsy. I showed nothing in terms of cancer in my 2 inches removed in my lumpectomy. Despite this, my doc strongly promoted radiation treatment.
Being in an emotional state, I opted to go through radiation treatment, but still have lingering doubts to its efficacy for someone like me.... not to mention the fear that has ensued in regards to my heart, as my treatment was on my left breast.
It's a hard thing to grapple with-- and it's an emotional topic when you are diagnosed, as the stress is that no one should downplay DCIS, as it's technically cancerous cells located in your body.
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The idea of "taking the carcinoma out of DCIS" is popular these days - I've read lots of articles about it. The article above is not new -it's from 2010. And there are lots more articles like it.
The whole thing makes my blood boil, actually. The reasons that are usually given are that some women over-treat their DCIS and many women over-react (and become needlessly fearful) when they receive a diagnosis of "breast cancer". So to solve these problems, let's just not call it breast cancer then, okay!
Gee, what a great solution. Well, maybe so, for those women who are diagnosed with low risk DCIS. But what about women who are diagnosed with high risk DCIS, DCIS that might already be hiding invasive cancer? Over the past few years, as this "take the carcinoma out of DCIS" movement has grown, I've seen more and more women come to this board wondering whether they need to treat their DCIS. They say "it's a pre-cancer, so why do I need surgery?". The problem is that in most of the cases I've seen, the women wondering about not treating their DCIS have what appear to be very high risk cases of DCIS.
Let's look at some facts:
- The fact is that nobody knows how long it will take, on average, for a low risk case of DCIS to become invasive (if it ever will). Certainly there are studies that have shown that some cases of low risk DCIS don't become invasive for 15 - 20 years or more. However Dr. Esserman is wrong when she says that "only high-grade DCIS is likely to progress to invasive breast cancer." That is simply not supported by the facts. Lots of women on this board who've had low grade and intermediate grade DCIS can prove her wrong.
- The fact is that nobody knows what percentage of low risk DCIS will ever become invasive. The estimates of 25% - 40% (which is the range I usually see) are usually based on 5 year studies, or at most, 10 years.
- The fact is that almost every expert agrees that high risk DCIS will almost certainly become invasive and that in many/most cases, this is a short-term risk.
- The fact is that of women diagnosed with DCIS through a needle biopsy, approx. 20% are found to have invasive cancer once the entire suspicious area is removed and examined. Note that because these women are no longer Stage 0, they are not included in any of the DCIS stats on what percent of DCIS that becomes invasive. So Dr. Esserman is wrong in saying that less than 5% of cases of DCIS turn out to be "something more". I've read every study I can find on this, and usually the figures are in the range of 15% to 25%. In any case, we all know that what comes out on a needle biopsy is not necessarily the same as the final diagnosis, once surgery is done. Even if the final diagnosis remains DCIS, different grades of DCIS are often mixed together. So what happens if the biopsy picked up low grade DCIS but most of the DCIS is actually high grade with comedonecrosis? Or there's my case, where the needle only picked up ADH, yet I had over 7cm of high grade DCIS with comedonecrosis and a microinvasion of IDC. I guess watchful waiting would have been fine for me, right?
- One last fact: Nobody knows which cases of DCIS are truly low risk and which cases are high risk. While the grade of the DCIS and the size of the area of DCIS appear to be key factors in determining risk, there are cases where tiny amounts of low grade DCIS have become invasive. There has been recent research that suggests that there are particular biological factors within the DCIS cells that may influence the likelihood that the cell will evolve to become invasive. But this research is preliminary; it's too early to draw any definitive conclusions. Yes, the new Oncotype test addresses this too, but it's much too early to know if the Oncotype for DCIS is reliable over the long term. It's simply irresponsible to change the way we treat DCIS based on so little data.
So given the facts, given what we don't yet know about what makes a case of DCIS low risk and given all that we do know about high risk cases of DCIS, why in the world would anyone with a brain in their head recommend taking the word "carcinoma" out of DCIS? Yes, some women who are given a diagnosis of DCIS become much more fearful than they should; many women do over-react and over-treat low risk DCIS. But is the solution to change the name of the disease so that those who really are at risk end up not recognizing the seriousness of their diagnosis and end up under-treating their condition? Over-treatment is bad, but under-treatment is worse, since it will lead to invasive cancer and possibly, death.
I agree that the misconceptions and misunderstandings about DCIS need to be cleared up. I certainly agree that we need to find a way to reduce the fear and eliminate (or minimize) the amount of over-treatment. How about education and communication? How about having doctors properly explain to their patients what their diagnosis really means? How about stressing to doctors - and to patients - that DCIS is a heterogeneous disease and each case needs to be assessed individually? Teach doctors that radiation isn't always needed after a lumpectomy. Teach doctors that Tamoxifen isn't always needed for those who have ER+ DCIS (and certainly isn't needed for those who have a BMX for DCIS). Consider teaching doctors that for some very tiny grade 1 tumors, maybe surgery isn't even needed. But then there are the other cases of DCIS - the large, high grade tumors (which I believe is actually the majority or close to the majority of cases). Those need to be treated very differently.
One day, once medical science is able to determine with a high degree of certainty which cases of DCIS are low risk and which cases of DCIS are high risk, then only those low risk cases should be reclassified as a pre-cancer (or high risk condition) under a different name. To ever take the word "carcinoma" out of a high risk diagnosis - a diagnosis like mine and so many others - would be beyond stupid.
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What Beesie said.
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What Bessie said! Thank you, again, Bessie for being the voice of reason. But, I also know that everyone has to follow their own path and do what feels right for them. That being said, I don't want this diagnosis minimized either. I am one of those with high grade DCIS that I know is CANCER and I had to treat it as such. My sig line says 1 cm, but it was spread over an area of about 6 cm. from end to end.
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Hi Beesie,
First off, I'm not sure why you typed all that and then started calling people "stupid." I wish you wouldn't name-call. Name-calling is where you go when you can't make a case.
Your case seems to be because DCIS currently has "carcinoma" in its name we should treat it as a bomb rather than watchful waiting. Treating a disease aggressively because of an arbitary name seems like treating the name, not the condition.
We don't want a whole group of women getting heart attacks from the effects of radiation because the scientists hadn't gotten around to change the name to a more accurate designation.
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Excellent, Beesie! Very well said. Where's the dang LIKE button.....
And lucy88, did you actually read Beesie's post? Please read it again. -
Zuvart,
You probably read the Nordic Cochrane report which supports your case. Regular mammography screening is certainly causing more DCIS.
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Lucy...Beesie is not calling anyone stupid. She is calling an action stupid. Beesie, is, as always, being incredibly articulate and thorough.
I am someone that had low grade DCIS, unifocal. This was after a year and a half of ADH and calcification scares. My left breast was hopping. Things just kept arising. First the calcifications, then the ADH, then new calcifications, then the DCIS. I was given lots of options and willingly took the mastectomy without radiation option. Many times I have wondered if there is some pharmaceutical and mammography and other big business industry that is encouraging the entire process that led to my dx and tx. However, I know that something was up in my breast and I am very glad I opted for mx, whether it all was overkill or not.
I think that given our current understanding of DCIS, that it is sensible to treat with mx or lumpectomy with rads. It also might be reasonable to wait and see if the DCIS is low grade and there are no other suggestions of bigger problems.
However, I think it is irresponsible to discourage women from following current treatment plans. We just aren't in a position to disregard what science is currently telling us. No one with a new dx should be second guessing herself and her doctors. If she is the type of person who feels comfortable waiting, then that might be right for her. However, it seems to me that the "movement" toward taking the carcinoma out of the name is using names to manipulate everything as much as anyone.
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I don't call LCIS carcinoma - it's actually not cancer but they still use the word in the name - it's actually neoplasia.
BTW - Beesie did not call anyone stupid.
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Lucy, as CLC and Susie have pointed out, I didn't call anyone stupid. What I said was that it would be stupid to take the take the word "carcinoma" out of a high risk diagnosis. And I pointed out that at this point in time, medical science really isn't very good at determining which diagnoses of DCIS are high risk and which are low risk. So changing the name of DCIS, at this time, based on current medical knowledge, would be stupid. Perhaps a more appropriate word would be "irresponsible" but frankly I prefer "stupid" when I think about what the implications would be to someone who had a needle biopsy like mine. Or when I think about a number of women who've been through the DCIS board recently, with a needle biopsy diagnosis of DCIS, but who were determined after surgery to have small, very aggressive and potentially life-threatening HER2+ invasive cancers. Would these women have had surgery to remove their DCIS if DCIS was just considered a high risk, pre-cancerous condition? I'm pretty sure that in a couple of cases, the answer would be "no". Would my surgeon have convinced me to have the excisional biopsy after my needle biopsy showed just ADH, if the risk of DCIS was just the risk of another high risk condition? I'm pretty sure the answer would have been "no". And then what would have happened?
As for your comment, "Treating a disease aggressively because of an arbitary name seems like treating the name, not the condition.", it seems that you didn't thoroughly read my post. I acknowledge that some cases of DCIS are over-treated, and we need to better educate doctors and patients so that this doesn't happen. Not all cases of DCIS need radiation, not all cases of DCIS need Tamoxifen, some cases of DCIS might even not need surgery (although given the current uncertainties of screening and needle biopsies, there probably aren't many situations where this would be the case).
I am sad when I see someone with DCIS who is over-treated. I hate to see someone undergo painful, stressful, life-altering treatments that really aren't medically necessary. I understand and appreciate that in some cases, based on family history or personal history, it makes sense to "over-treat" DCIS because of future risk or past experiences. But in many cases, there is simply no reason to do more than surgery to remove the area of DCIS. So yes, there is a lot of over-treatment, and each case saddens me. We need to find a way to reduce the amount of over-treatment.
What over-treatment doesn't do is worry me or frighten me. Under-treatment, on the other hand, scares the @+*# out of me. I've seen the implications on this board. Situations where the diagnosis is high risk DCIS, and yet the belief is that DCIS is just a "pre-cancer" so why do radiation, or why have a re-excision or mastectomy because of dirty margins? And then there is an invasive recurrence.
DCIS is complicated. DCIS is not yet well understood. Changing the name of DCIS to remove the word "carcinoma" is pre-mature, and frankly, is dodging the real issue. Medical science needs to learn more about DCIS before any action like this is taken. And we need to address the issue of over-treatment with education, not a silly - and potentially dangerous - name change.
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Beesie rocks! Everything she said.
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I'm on a roll, and this is one of my biggest 'hot button' issues, so here's a copy of an older post of mine, with some of my observations about the data that is often presented about DCIS when the argument is made that DCIS should be considered a pre-cancer, and the word "carcinoma" should be removed from the name.
- When talking about the seriousness of DCIS, what's often quoted is the mortality rate. Yes, it's certainly true that the mortality rate is extremely low - only about 1% and only for women who have a recurrence in the form of IDC. For DCIS alone, the mortality rate is 0. 100% survival. Does that mean that DCIS isn't serious? Or does it just mean that the objective should be catch all BC when it's still DCIS because that's the only form of BC that is curable? Isn't it counterproductive to suggest that smaller amounts of DCIS don't need to be treated? Wouldn't some of these untreated cases evolve into IDC, thereby increasing the overall mortality rate?
- Another thing that confuses me is when these articles talk about the % of cases of DCIS that will develop into IDC within 5 years. What's so special about 5 years? Don't we all know that BC can take years to develop? I'm not surprised that a relatively small percentage of DCIS cases don't turn into IDC within 5 years. 5 years is a short time in the development cycle of breast cancer. But what about 10 years? Or 20 years? Will 90% of DCIS cases develop into IDC within 20 years? I was 49 when diagnosed and I sure plan to be around for at least 20 more years. So the 5 year window is irrelevant to me, as it is to most DCIS patients.
- Then there's the question of who and what is being included in these studies. Although I consider myself to be a "DCIS patient", in fact because I had a microinvasion I'm officially considered Stage 1. So my case isn't included in the DCIS stats. This is true for anyone with a microinvasion. What this means that all the cases of DCIS that have already developed into IDC at the time of surgery are not included in the stats when discussing what percent of DCIS will become IDC. Doesn't that significantly downplay the risk that DCIS will become invasive? Mine already had become invasive but I don't count. And that's true for about 20% of DCIS cases. (And that doesn't count a small percent of cases where the microinvasion is missed in the pathology.)
- On top of that, when these experts talk about the % of DCIS cases that develop into IDC, the only cases that they have to study are DCIS cases that were missed at biopsy, and ones that were found in autopsies. Well, if the DCIS was missed at biopsy, doesn't that likely mean that it was very small and not aggressive? So it's no surprise that it didn't become invasive within 5 years, is it? And when DCIS is found in an autopsy, do they know how long it was there? Just because it wasn't invasive when found doesn't mean that it may not have become invasive given more time.
- Lastly, I've often seen the statement that less than 10% of women who had DCIS removed developed a subsequent invasive cancer within the next 5 years. The implication is that less than 10% of DCIS cases would have become invasive over the next 5 years. But in fact, this statistic talks to the recurrence rate after DCIS surgery; it's got nothing to do with whether the original DCIS, if not removed and properly treated, would have developed into IDC. If the original DCIS had not been removed, the rate of invasive cancer within 5 years likely would have be through much higher.
Now, some information from articles about DCIS. Yes, I did pick specific quotes to support my argument, but I'm just trying to make the point that 1) the argument made by those who say DCIS is low risk (except for high grade DCIS) and never turns invasive is simply unsupportable and 2) it's dangerous to assume a diagnosis of DCIS simply from a screen image or even a needle biopsy.
"Approximately 60% of screen-detected DCIS is high grade and in the vast majority of these patients adequate treatment will be preventing the occurrence of high grade invasive breast cancer. Approximately one-third of malignant calcification clusters detected at screening mammography already has an invasive focus." Ductal carcinoma in situ (DCIS): are we overdetecting it?
"The subtype profile of screen detected DCIS suggests that most lesions would progress to high grade invasive disease within 5-10 years. Preventing such high grade invasive disease is likely to have a considerable impact on breast cancer mortality. The small proportion of low grade, non-necrotic DCIS lesions found at mammographic screening indicates that diagnosis of the more indolent forms of DCIS is not common. This finding indicates that overdiagnosis of DCIS at mammographic screening is not a major problem." Screen detected ductal carcinoma in situ (DCIS): overdiagnosis or an obligate precursor of invasive disease?
"Approximately 40% of patients with DCIS treated with biopsy alone, without complete excision or further therapy, develop IBC."
"The natural history of low-grade DCIS can extend more than four decades. IBC develops at or near the same site in the ipsilateral breast as the index DCIS lesion in the majority of women in whom DCIS goes untreated. Sanders et al. reported on the long-term follow-up of 28 women with low-grade DCIS treated by excisional biopsy alone. Eleven women (39%) developed IBC, all in the same breast and quadrant from their initial biopsy. Seven IBCs were diagnosed within 10 years of the DCIS biopsy. Five women developed distant metastasis, which resulted in death 1-7 years after the diagnosis of IBC."
"Breast cancer that is diagnosed by detecting incidental calcifications on mammography is pure DCIS in 65% of cases, DCIS with a focus of invasion in 32%, and IBC in 4%"
Current Treatment and Clinical Trial Developments for Ductal Carcinoma In Situ of the Breast
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My DCIS never showed on the mammogram. It was found during the lumpectomy for IDC, which did show. Thank goodness there was DCIS 1mm from the margin or the larger, more aggressive IDC would never have been found or removed.
I worry that some of the wanting to treat by watchful waiting is due to that being cheaper, rather than safer.
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What is this discussion doing on the Alternative Board?
My view, DCIS is not cancer. By definition. But if you think it is, there are other places on this board where you can talk about your treatments.
Please, just don't do it, here. On the Alternative Board. Please just respect the original poster.
The truth is anyone really interested in Alternatve Breast Cancer Treatment does not come here, anymore. I have not been here in months. And I come back, to find this.
Too bad. I wish all of you women well, with all of your "treatments."
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Beesie does such a good job at explaining things. I am glad that I had bilateral mastectomies!! My milk ducts were riddled with ADH and DCIS and skipped a section then started all over again. It was almost like a tornado ripping through...hit one spot, miss another, hit one spot and so on. DCIS is sneaky. Perhaps so many women are being diagnosed with DCIS and getting proper treatment before it becomes IDC. There is no way to 100% predict which group of DCIS will become IDC and which won't. There are guides to it but when it boils down to it, you never know which end of the pickle you will get.
I had a pre surgical mammogram and said if they even SUSPECT anything in the other breast, I just wanted that off, too. It turned out to be PASH, a benign tumor whose only treatment is surgery and it was so far back sounds like they would have cut through anyway.
I saw Hamied R. Rezazadeh M.D.head of Aspirus Cancer Center and he explained the mutation of cells going from normal to ADH which then mutates in DCIS, cancer.
I had bilateral mastectomies and SNB's for my DCIS which is cancer and I am happy I chose my treatment.
I do not consider me to be under HYSTERIA about DCIS. I thought "I have cancer. And I want it out." I do not consider myself to be over treated at all. The thing I learned about DCIS is that it can crawl though the milk ducts and spread all over. I know mine did. Then throw in ADH in there and the milk ducts can be a mess. DCIS does not always present as nice little lumps.
And if women want lumpectomies plus rads or mastectomies or want tamoxifen, etc more power to them! I think women who have cancer should make the decisions about their treatments! I think the role of a good doctor presents all the information about the cancer, precancer and lets us decide what is best for us. Unless, of course, we are way off course. Then a little guidance would be good.The only over treatment I can see for purely DCIS with no IDC component would be Chemotherapy.
I certainly would not want to be undertreated and end up with IDC.
BEESIE...,ALWAYS EXCELLENT INFORMATION GIVEN IN EASY TO UNDERSTAND TERMS! BEESIE DID NOT CALL ANYONE STUPID. SHE HAS THE MOST LOGICAL ANSWERS AND DOES NOT NEED TO BE NASTY. SHE IS ALWAYS RESPECTFUL AND INFORMATIVE.
That being said, if you want to have alternative treatments, I will not disrespect your choices. So don't disrespect mine.
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Leia, this is a discussion board. The points I've made in my posts have been in response to the points made in the orignal post. Is that not how a discussion board is supposed to work? Someone posts something and then everyone discusses it?
And why, in your view, is DCIS not cancer? I'm interested in understanding your basis for saying that. In my view, DCIS, by definition, is cancer. The DCIS cancer cell becomes an IDC cancer cell when it moves from inside the duct to outside the duct. Same cell, just a different location. There are many other types of cancer that at their earliest stage start in-situ. There doesn't seem to be any debate about whether these cancers are cancer or not, so I'm curious why you think that DCIS is different.
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If you went to a dermatologist and they checked a mole and said it looked suspicious, they want a biopsy. You would do it, right? If it came back that you had cancerous cells in that biopsy would you treat it or wait and see how it grows? If they said remove it would you? If they said they thought your should radiate the area would you? Would you wait to see if it infects your blood supply? Lymph nodes? Would you stick your head in the sand and say it's nothing? Why is it different to want to treat DCIS? To remove the in situ CARCINOMA?
I am very offended by posts such as these that minimize what women go through such as myself and insult others. My great grandmother died of "disease" in her 30's. My grandmother died in her 40's from breast cancer and my mother died in her 50's from breast cancer. So when I was 34 and diagnosed with DCIS I am over treating by dealing with my cancer? These are not precancerous cells they are cancer and I will never understand where the confusion comes from.
Is there really a person out there when faced with the same decision says-"naw....let it grow!!! See what happens?"
If there is I want to see that study. Give me 100 women who had my diagnosis who left it there and tell me what happened 2, 5, 10 years later. Truly, prove me wrong and give me peace of mind. There are woman on this board who went from 0 to 4 with treatment. Tell them they did too much. Try to prove it to me. Really.
Though while you are at at don't slam other members of this board like Beesie. Rise above it all and tell us why all of us DCIS ladies are such over reactors with some proof.
I apologize if I am snippy- but really who wouldn't remove a potentially deadly disease if found and then to be told we are over reacting? YOU leave it there!!!!!
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When I was new, feeling upside down, and not sure how to determine the best choice for me, someone mentioned that DCIS is "non-invasive cancer". That definition really helped me get my mind around what I wanted to do. It implies that DCIS can indeed morph into an invasive form - something we've seen often enough. And the expression allowed me to face it directly and decide. While my choice to have a bmx may be overtreatment for some, for me I did not want to wait around to find out if/when DCIS had morphed into being invasive. Nope. Waiting could well be undertreatment, since it's notoriously hard to see in imaging.....
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Thank you for posting this article zuvart! It was a huge factor in my ability to take time, get 2nd, 3rd & 4th opinions, visit personally with Dr. Esserman and most recently have the Oncotype DX test. I was initially diagnosed as intermediate grade, but after Dr. Lagios reviewed my pathology, he changed it to grade 1. While I don't agree with everything Dr. Esserman says and Beesie has made some excellent points, there are those of us who are totally at peace with our choices for less "standard of care" treatments. I recently created a blog to share my journey, to shine light on this controversy and to offer support for women who resonate with less invasive treatment. ~ Donna www.dcis411.com
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Susieq:
Neoplasia is another word for cancer. Means the same thing.
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Bessie
That was well said. I had high grade DCIS and grouped calcifications on both sides. The mammogram only showed calcifications and luckily it appeared on me in a form of a lump. They could not tell it was high grade DCIS with a mammogram as my breasts were very dense. I did choose BMX for myself after much consideration and I'm glad I did. I hope to never have to deal with invasive breast cancer but realize even a BMX there is no guarantee. I did the surgery in hopes to llower my risks. I wanted to do everything i could to try to prevent invasive cancer and then worrying it could end up anywhere in my body before it could be found. My pathology ended up showing pre cancerous cells all over both breasts. I think until more is known about the disease doctors should continue to treat it. Of course it is up to each patient how aggressive they would like to treat it. It's a personal decision and should be decided based on your own risk factors etc. one treatment like sitting and watching doesn't work for everyone because our imaging can not always pick it up. There are plenty of women with invasive cancer that didn't show on their mammogram. -
Although the name includes the term carcinoma, lobular carcinoma in situ (LCIS) is not really cancer, but rather a noninvasive condition that increases the risk of developing cancer in the future. LCIS, also known as lobular neoplasia or stage 0 breast cancer, occurs when abnormal cells accumulate in the breast lobules. Each breast has hundreds of milk producing lobules, which are connected to the milk ducts. In LCIS, the abnormal cells are often found throughout the breast lobules and both breasts are affected about 30 percent of the time.
Although most doctors don't think that LCIS itself becomes breast cancer, about 25 percent of patients who have LCIS will develop breast cancer at some point in their lifetime. This increased risk applies to both breasts, regardless of which breast is affected with LCIS, and can manifest as invasive cancer in either the lobules or ducts.
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The problem with "watchful waiting" IMO is we need better survelliance. Mamograms have to high of failure rate. My story......
When my radiologist office installed a "digital" mamogram machine to replace it's "analog" machine, my mamogram showed more calcifications than ever in my dense lumpy breasts. There was 1 cluster that the radiologist was concerned was DCIS. I chose watchful waiting. I eventually developed a lump away from the cluster that was found to be IDC w/DCIS. Then the radiologist seem to think every cluster of calcifications was suspicious & wanted to do more biopsies. Fortunately my BS got involved & ordered a MRI instead. It showed a tumor in the other breast also which was found to have positive nodes.
Since I was found to have bilateral disease both IDC w/DCIS, I chose the BMX route. Some may say I was overtreated. One of the tumors probably could have been treated with a lumpectomy. I understand "peace of mind" & it's not something you can get from a mamogram. I also understand "watchful waiting", I chose it & would probably do so again except I've run out of breasts. I was OK with waiting for a "lump". I considered travelling to S.F. to speak with Dr Esserman when I was told about my suspicious cluster. More research is definitely needed to determine which DCIS needs to be treated & better surveillance techniques. Until then "overtreatment" will continue.
So maybe I don't understand "peace of mind" . Did I ever have it? Mamogram reports said that mamograms weren't very effective with breast densities like mine. Do I have "peace of mind" now? I could have a reoccurence....... Just my thoughts.....
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Pessa, neoplasia is not another word for cancer. Cancer is always malignant. There are no benign cancers. Neoplasia can be benign or they can be malignant.
"Because neoplasia includes very different diseases, it is difficult to find a definition that describes them all. The definition of the British oncologist R.A. Willis is widely cited: ''A neoplasm is an abnormal mass of tissue, the growth of which exceeds and is uncoordinated with that of the normal tissues, and persists in the same excessive manner after cessation of the stimulus which evoked the change.''
This definition is criticized because some neoplasms, such as nevi, are not progressive."
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Again, out of the ballpark, Beesie.
I also want to add my concern with "watchful waiting." My doctors were "watching" my left breast for years. I'd had four biopsies, all benign - what I was told. When I went for my mammogram in January 2011, they suddenly said, oh, there's a tiny spot of calcification on the right side. At the biopsy, they said, think we got it all, it was so small. So when I went for the lumpectomy, doctor said, gee, what a surprise, it's 7 centimeters by 4 centimeters, but we got it all. When I made the decision for BMX instead of radiation because I'd had enough, the surgeon found another 3 centimeters that first surgeon had missed. So the assumption with watchful waiting - that the doctors will actually find the cancer before it spreads -is a doubtful one at best.
I fear that the movement to reclassify DCIS is a move to save money at the cost of women's lives. I remember the most chilling information I read when I was making my decision is that bc is not a five year disease, but a 15-20 year disease. I was 58 at diagnosis, with my mother who lived to 88 and a father still alive at 92. I plan to be here in 15-20 years.
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I agree that this thread should be in the DCIS forum so that those diagnois with DCIS will benefit from the information Beesie posted. It is interesting that those who have blmx do not need tamoxifen. From what I understand tamoxifen only protects the remaining breast. So, those who have a blmx..taking tamoxifen would be over treatment .
If I understand correctly those who are now dx with DCIS are having the her2+ and oncotype testing done, which would give the needed information if to have more drastic treatment or recommend a mastectomy. If I knew back in 2007 that even with clean margains that I would be dx 3 times in that breast and right under the first scar (where said clean margins) the mammo would find a palliable tumor for idc, If I knew what I knew now, I would had more aggressively treated my dcis with a right breast mx, which would had prevented a idc with the her2+ type of cancer. I wish I would had the oncotype or her2+ test done at initial dcis cancer. Unfortunately I was led to believe that a grade 3 dcis dx was a good cancer, and the odds after surgery was I wouldn't ever have to deal with it again.
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My DCIS didn't grow overnight. Therefore, I knew I had time to silence the fear and get educated. (Experience has taught me that real fear, the kind that immobilizes rational thought and causes hysteria, could lead me to make poor decisions that I would later regret.)
Once I gathered my information and met with a naturopathic onc, I was able to make the right decision for ME. Beyond lumpectomy, I chose the alternative path based on my situation, comfort level and health history.
My detox therapies, diet plan, supplement program are intense. But like many women on this alternative forum, I don't mind one bit. I am at peace with my choice and have never looked and felt healthier. I wish all of you the same.
As for mammograms, this supposed "gold standard" often does more harm than good. Since the early 80's, incidences of DCIS have increased by 500 percent. I cannot causally dismiss the fact that DCIS was rare before mammograms. What a mess and a good strategy to shove more women on the Tamoxifen train and keep radiation oncologists on pay roll. Buyers beware. There are other screening tools for cancer that are kinder to our breasts. That's the direction I will be heading in from now on.
Here is an interesting article I found.
Breakthrough Method Predicts Risk of Invasive Breast Cancer
"For the first time, scientists have discovered a way to predict whether women with ductal carcinoma in situ (DCIS) -- the most common form of non-invasive breast cancer -- are at risk of developing more invasive tumors in later years." http://www.sciencedaily.com/releases/2010/04/100428173335.htm I wonder if it'll ever see the light of day.
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zuvart, that study is the one that I was referring to earlier (although I didn't include the link) when I made the comment that there appear to be "particular biological factors within the DCIS cells that may influence the likelihood that the cell will evolve to become invasive." I tried to dig up the study last night but couldn't find it. I'm glad that you did.
This is exactly the sort of work that needs to be continued so that in time we are truly able to determine which cases of DCIS are high risk and dangerous, and which cases of DCIS are low risk. The problem, as I mentioned above, is that this work is still in the early stages, so it's premature to implement significant changes in treatment protocols based on these findings. One of the principle investigators involved with this study called the results a "powerful beginning".
It's also important to understand what the study is really saying. All of the women who were studied had had lumpectomies. Therefore what was measured was not the likelihood that DCIS might turn invasive, but the risk of developing an invasive recurrence within the first 8 years following removal of the DCIS. What was found was that the lowest risk group had a 4% chance of developing an invasive recurrence within 8 years after surgery. This of course is different from what might happen if DCIS is not surgically removed - and I think it's fair to assume that the rate of invasion probably would be higher in that case. A recurrence that develops from a few rogue cells left after surgery is different than what might happen if the entire area of cancer is left in the breast. So it's important to understand that the authors of the study were not suggesting that anyone can pass on surgery; rather, they presented data that might help women decide whether or not treatments such as radiation are required in addition to surgery.
In reading the article, I noticed another article referenced on the same page. This one was interesting too, and provides the other side of the coin, highlighting the risks associated with possibly under-treating DCIS:
This study looked at women who'd had DCIS and then had an invasive recurrence. They noted "that the development of invasive ipsilateral breast cancer was associated with death rates that were statistically significantly higher than those in women who did not develop an invasive ipsilateral breast cancer. Recurrence of DCIS was not associated with higher mortality. Radiation treatment after lumpectomy reduced the risk of ipsilateral invasive breast cancer compared to lumpectomy alone, and treatment with radiation and tamoxifen reduced the risk compared to radiation only. The reductions in risk were statistically significant." DCIS Patients Who Get Invasive Breast Cancer Have Higher Mortality, Study Finds
This just goes to show how complicated, and varied, DCIS is.
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Reading through this thread, and as someone who does not know a lot about DCIS, I am nevertheless struck by how much there is more agreement than disagreement.
I think people need to separate things in their minds:
1) Your diagnosis and it's medical significance
2) Your feelings.
Laurie08: The possibility that some DCIS may not need treatment does not in any way invalidate your feelings. With your family history, I can't imagine the panic and fear you were in at dx- and before, I'm sure. I did not suffer as much as you partly because I had no family hx. You are wondering if you are re-living an experience that has wrought devastation in your family. That must be truly awful, and no scientific theory changes that.
There is universal agreement, both from reading the op's interesting articles and from reading others here, that DCIS's have to be distinguished, and that the risk of high grade versus low grade arguably calls for a different medical point of view. I see nothing wrong with pointing that out. A scared woman does NOT equal a stupid person who will make decisions based on the first post by a non-professional that she reads - contrary to what one might sometimes wonder about when reading here. It's beyond sexist, insulting and degrading to suggest otherwise. (And stupid people are brain dead scared or not.) Scared women can still think, and they can still be made to understand the nature of their DCIS. Other than that, we are all responsible adults. We are not babies. We can handle the research and its uncertainties. There would be no progress without uncertainty.
Finally, this is a discussion forum of non experts and if there are any points to be made it is that this is NOT a substitute for medical advice. It is first and foremost a support forum.
I don't think anyone is trying to invalidate the feelings of a person dx'd with DCIS in saying that some manifestations of it may do well with watchful waiting. In fact, the discussion of variations within DCIS gives me (and should give others) hope because it shows that we are coming a long way in our understanding of the subtleties of cancer. The one-size-fits-all treatment paradigm is rightly being questioned. I am ELATED to hear every time molecular biology is ued to study IDC, instead of statistics. We do know that there is some DCIS that will never progress to be cancer. If we could ever discover which - if we could give that many women and their families solace, how wonderful would that be? Don't we want to work towards knowledge of that? I'm sure we do.
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