anyone with low grade dcis not having radiation

Janet456 · December 2012

Mine was 9mm of grade 2. The oncologist was happy for me to skip rads as the margins were clear. x

ballet12 · December 2012

MMulder, my radiation oncologist is at Memorial Sloan-Kettering. She conducted a study, reported recently, on low grade DCIS. Her findings indicated that even with a small amount of dcis and clean margins, radiation still had a sizable impact on recurrence rates. She was actually quite surprised with the results. She assumed that they could find a group of indviduals for whom radiation would not be necessary.

Here is the study. RTOG 9804: A prospective randomized trial for “good risk” ductal carcinoma in situ (DCIS), comparing radiation (RT) to observation (OBS) My RO is Beryl McCormick.

Best of Luck

Beesie · December 2012

I think it's well established that radiation reduces recurrence risk, whatever the starting level of risk may be. Even if someone has a very favorable pathology and starts off with a very low recurrence risk, rads will be able to reduce the risk further. So the research findings don't surprise me.

To me, the question is "At what level of recurrence risk are you willing to forgo the extra benefit from rads?" It's not a question of whether rads provides any benefit; we know it does. It's a question of whether rads provides enough benefit that it's worth the risks and side effects from the rads.

In the study, it appears that at 5 years, the recurrence rate was 0.4% for the radiation group, and 3.2% for the observation group. Because there were so few recurrences overall, the study was not able to correlate the recurrences with the patient's age, or the pathology of the DCIS, i.e. the size or margins or grade.

Whether this is related and/or significant or not, the study found that the rate of contralateral breast cancer was 3.0% in the radiation group, and 1.9% in the observation group. The level of grade 1-2 toxicity was 76% in the radiation group and 30% in the observation group.

The study results noted that longer term follow-up is required. I would certainly agree. There needs to be a determination as to whether the difference in recurrences rates between the two groups tightens over time (most long-term studies have shown that rads reduces recurrence risk by approx. 50%) and whether there are any long-term negative effects from the radiation.

RTOG 9804: A prospective randomized trial for “good risk” ductal carcinoma in situ (DCIS), comparing radiation (RT) to observation (OBS)

We all have to make our own decisions on which treatments we choose. Personally I don't have any problem with and/or fears of rads; I'd absolutely go with rads if I felt that I was going to get a meaningful benefit. But if I had a diagnosis of low grade DCIS and I faced a 3.2% recurrence risk after surgery alone, I don't think I would take rads to get this risk down any lower. On the other hand, if my diagnosis was high grade IDC, and I faced a 3.2% risk of recurrence, I probably would go with rads. The risk of a local recurrence of low grade DCIS, even recognizing that ~50% of DCIS recurrences aren't found until they've become invasive, doesn't worry me nearly as much as the risk of a local recurrence of an already aggressive invasive cancer, which could go on to metastasize. That's how I would assess these results for myself. But for someone else, I can appreciate that the difference in DCIS recurrence rates found in this study might be enough to warrant rads.

BLinthedesert · December 2012

that is *5-year* recurrence rate ... and 3.2% in 5 years is actually quite large (especially if you are young) ... not lifetime, or even 10-year, but 5-year. The only other randomized clinical trial that was conducted was stopped after 5 years because the recurrence rate in the no radiation group was too large (outside of the parameters that were established before the trial started). Unfortunately, low grade does NOT seem to confer a protective effect - we still really don't know *what* pathologic parameters are "ok" and which are not ... which is why radiation is currently on the table for all women with DCIS who choose lumpectomy. I agree it does come down to a level of risk tolerance, but, unfortunately, no one has proven (yet) what the recurrence rate is - and low grade has not been proven at all to be a viable parameter to describe this risk.

Beesie · December 2012

I agree that low grade alone is not a reliable indicator of recurrence risk. But when you combine low grade with small lesion size, wide margins, single focus.... I think there is a lot of research out there that suggests that a combination of favorable parameters presents a much lower recurrence risk than a diagnosis that is not so favorable on all dimensions. (I don't have time now to dig out the studies but I will try to post some later if I get the chance.) Of course there is no guarantee... recurrence risk is never going to be 0%. So there will always be some women who will recur despite having a favorable pathology.

I am aware of the study that was stopped but my recollection is that the parameters of the participants were not all favorable - I believe that some women with smaller grade 3 tumors were included.

By the way, I don't think that a 3.2% recurrence rate over 5 years is high... or at least, it's not high for me. Of course over the long term the recurrence rate will be higher, but since a higher percent of recurrences occur over years 1 - 5, I suspect that the total recurrence rate would be one that I would be able to live with, and I'd forgo rads. But that's just me. Everyone has their own level of risk tolerance. I think what's important that is everyone try to understand, as much as we can with current medical knowlege, what their recurrence risk is based on their pathology. And then everyone should make their decision about whether or not to have rads based on their own recurrence rate, and their own level of risk tolerance.

BLinthedesert · December 2012

a 3.2% recurrence rate in a study is not the same thing as a persons predicted rate of recurrence, population statistics are different from predictive models (like the one that MSK has on their website); predictive models use population statistics and calculate an individuals response. It is a common misperception (even by physicians) that these are the same. I again will disagree with you on the VNPI (the parameters that you have listed as being predictive in recurrence) - unfortunately, these have not ever been able to be validated outside of Silversteins group, and there have been several studies that have tried to replicate them. It is likely, unfortunately, more complicated than simply these pathologic variables. It is for this reason, that many physicians (not all) still recommend radiation - even in the case of small, low grade, single foci. Until a consistant set of either pathologic, hormonal, protein, genetic, or some combination of all these is found, it is unlikely that these recommendations will change, no matter how many small studies, most that were not randomized, are published.

Beesie · December 2012

BL, I was just using the 3.2% as an example, since that was the 5 yr. recurrence rate of the non-rads group in the study. I understand that population stats are different than predictive models. This is why I ended my previous post suggesting that everyone try to understand, as best as they can given the imperfect information we have, their own specific recurrence risk.

To my earlier post, here are a few of the very many studies that have looked at which factors influence DCIS recurrence rates:

Characteristics associated with recurrence among women with ductal carcinoma in situ treated by lumpectomy "Nuclear grade is strongly associated with recurrence but not with the type of recurrence. Women with high-nuclear-grade DCIS or DCIS detected by palpation who are treated by lumpectomy alone are at relatively high risk of having an invasive breast cancer recurrence, compared with women with low-nuclear-grade or mammographically detected DCIS"

Defining negative margins in DCIS patients treated with breast conservation therapy: The University of Chicago experience "A multivariate analysis showed that early age at diagnosis, positive margin status, and high nuclear grade were independently associated with local recurrence."

Factors associated with local recurrence and cause-specific survival in patients with ductal carcinoma in situ of the breast treated with breast-conserving therapy or mastectomy "Young age (<45 years), close/positive margins (< or = 2 mm), no breast radiation, and lower electron boost energies (< or = 9 MeV) were associated with IBTR (ipsilateral breast tumor recurrence). Local failure and predominant nuclear Grade 3 were found to have a small (4%-12%) but statistically significantly negative impact on the rates of distant metastasis and CSS (cause specific survival). These results suggest that optimizing local therapy (surgery and radiation) is crucial to improve local control and CSS in patients treated with DCIS."

Factors associated with local recurrence of mammographically detected ductal carcinoma in situ in patients given breast-conserving therapy "When specifically analyzed for TR/MM, younger age at diagnosis, number of slides with DCIS, number of DCIS and cancerization of lobules (COL) foci within 5 mm of the margin, and the absence of pathologic calcifications demonstrated a statistically significant association."

259 Patients with DCIS of the breast applying USC/Van Nuys prognostic index: a retrospective review with long term follow up "After multivariate analysis including seven clinical and pathological factors, the only significant predictors of local recurrence remained margin width of surgical excision, previous therapy with estrogens (contraceptives or Hormone Replacement Therapy) and the Van Nuys pathologic classification....Although in our series there is not a significant difference in LR rates by the parameter of age, the new USC/VNPI is still a simple and reliable scoring system for therapeutic management of DCIS. We did not find any statistically significant advantage in groups treated with the addition of RT. Obtaining wide surgical margins appears to be the strongest prognostic factor for local recurrence, regardless of other pathological factors or the addition of adjuvant radiation therapy. However, only prospective randomized studies can precisely predict the risk of LR of conservatively treated DCIS."

None of these studies are the be-all or end-all of studies, and there are many more studies on this topic - some with conflicting results. So it's certainly true that we don't have "the answer" as to which pathology presents - with certainty - the lowest risk. But from all I've read, I believe that there have been enough studies done to give us an idea of what combination of factors present the lowest risk, vs. those that present a higher risk. I can guarantee that if the RTOG 9804 trial had studied "high risk" cases DCIS rather than "low risk" cases of DCIS, the 5 year recurrence rate would have been hugely higher than 3.2%. Consider too that while we are debating the need for rads for 'low risk' cases of DCIS, there is a movement out there that is suggesting that even surgery isn't required for low risk cases of DCIS. I can't say I agree with that one, but there are some well established doctors, experts on DCIS, who are going down this path.

I'm not suggesting that anyone should opt out of rads. But I also don't think that rads should be automatically assumed to be part of the appropriate treatment regimen for everyone with DCIS. Everyone should make their own evaluation, based on their pathology and their risk tolerance. Someone who has a single 4mm focus of grade 1 DCIS, and wide surgical margins, has a very different disease, and faces a signficantly different recurrence risk, than someone who has 4cm of high grade multi-focal DCIS with narrow margins.

The NCCN Treatment Guidelines suggest that "If you have a low risk of recurrence, radiotherapy may not be needed after a lumpectomy." They suggest that this be discussed with one's doctors. I'm not saying anything different than that. For some women, passing on rads may be a viable option that presents little additional risk. So there's nothing wrong with raising the question and investigating this as an option.

NCCN Guidelines for Patients - Breast Cancer See page 62.

voraciousreader · December 2012

BLinthedesert...Regarding the recommendation for the need for radiation for "low risk" tumors, you mention:

"Until a consistant set of either pathologic, hormonal, protein, genetic, or some combination of all these is found, it is unlikely that these recommendations will change, no matter how many small studies, most that were not randomized, are published."

I must humbly and most respectfully challenge your statement. I think if clinicians depended on the parameters you mention, then the NCCN breast cancer treatment guidelines would be only one page long and say, "Treat everyone as aggressively as possible." Likewise, I don't think the guidelines would be updated as often as they are and generously footnoted with categories of level of evidence, if it was so simple to arrive at a treatment plan. In a perfect world we would all love to have a treatment plan that follows a universal plan consistant with Category 1 evidence. However, that is NOT the case and that is why the NCCN guidelines run over 100 pages!

Since my diagnosis of a rare invasive breast cancer, I have followed the NCCN guidelines issued since my diagnosis as well as including several years BEFORE my diagnosis looking for differences in the recommendations and trends. What I have found is, pretty much, a moving target depending on what year I focus in on. Recommendations are fluid and DO change based on small amounts of evidence. Since my diagnosis, the treatment for my disease has become more lax. One word changes from year to year, lead to different options. When I was diagnosed, the word "recommend" was used with regard to endocrine therapy. Whereas today, the word "consider" is used. For my type of breast cancer, mucinous, there is no mention of the use of the Oncotype DX test. Whereas in 2011, the NCCN guidelines first "recommended" it's use for other invasive breast cancers. Most evidence for treating mucinous breast cancer is extracted from studies on traditional IDC or from SEER retrospective analysis. Because it is so rare and carries a "favorable" prognosis, there is little money for research making treatment plans that much harder to make because of the lack of clinical trial evidence. Most of the "evidence" to treat mucinous breast cancer is based on level 2b evidence.

So, if all clinicans depended on the level of evidence you describe to make a treatment recommendation for mucinous breast cancer, then NONE of them would be able to make a recommendation.

I think your perspective as a researcher blinds you from seeing what happens in clinical practice. From reading threads here for many years, patients often come here asking questions about gray areas....which there are MANY! Basically, a clinician needs to look at the characteristics of the patient's tumor, look at the "evidence" and then look at the patient and make a recommendation regarding treatment deciding at what point the risks of treatment outweigh the benefits for that patient.

Researchers, like yourself, and clinicians have known for a very long time that they were over treating patients. Without researchers and bold physicians who knew that lumpectomy and NOT mastectomy was feasable, we'd still be offering women no option. But in the last 40 years, breast cancer treatment has improved greatly to the point where researchers and clinicians are looking at the benefit of "less" being "more." The reason why we now have genomic tests like the Oncotype DX test and lumpectomies is because DESPITE what we DON'T know about breast cancer, there's A LOT more little things that are learned each day, week, month and year that yield treatment plans that eventually lead to Category 1 guidelines. Those guidelines do not occur in a neat fashion...but rather inch forward very sloppily.

According to the 2012 NCCN breast cancer treatment guidelines found on page 10, although Category 2b, it says that lumpectomy without radiation is an option. I don't think they would write that into the guidelines if it wasn't meaningful. It appears that for "low risk" patients, it is an option.

I think challenging the evidence, as a researcher is a good thing. However, for a patient and their physician it is a different ball game. With that said, I'm THRILLED that the NCCN breast cancer treatment guidelines are updated each year and are more than 100 pages long. It shows how long and sloppy research is and yet how it leads to options....and that's a very good thing!

BLinthedesert · December 2012

hmmm reader, I think you misread my comment a little, and I am not sure an attack on me is actually warrented. I guess what I meant to say is that "until more definitive set of risk predictors is proven radiation will continue to be recommended for a *majority* of even low grade DCIS tumors". I stand by this statement. There are many women who have very small low grade tumors for whom their physicians recommend radiation. There are few physicians (like Silverman) who are advocating no radiation for some women, but this the exception, and not the norm right now.

I am signing off of this discussion. Sorry to have raised the ire of you and Beesie.

voraciousreader · December 2012

Blinthedesert, I mean no disrespect by disagreeing with you. Your statements though, hit a nerve with me after being on these threads for several years because people come here every day trying to understand a disease that has stymied patients, clinicians and researchers. I interpret your statement,"...until more definitive set of risk predictors is proven" as so brusque!.....Yes! That is what is so elusive about treating breast cancer! The "until" factor! "Until" a more definitive set of risk predictors are proven... "Until" new markers are discovered..."Until new treatments are discovered..."Until" there's a cure....That is exactly what physicians and their patients are faced with every day when they have to come up with a treatment plan. There is no certainty even when a treatment is categorized at level 1! And that is EXACTLY why the NCCN breast cancer treatment guidelines are more than 100 pages long. After being on this discussion board for three years I no longer accept the word "until" in my vocabulary. Every day patients and their clinicians have to make treatment decisions based on whatever evidence is available. And in my humble opinion, the recommendation of deferring radiation would NOT have been written into the guidelines unless there was evidence whether or not it is "the norm." I've come to realize from sisters who came before me and after, that the best clinicians will discuss with their patients ALL of the evidence and then let the patient decide what's best for them. Ultimately, that should be "the norm."

Beesie · December 2012

BL, I wouldn't say that you've raised my ire. But I'll admit that I do get frustrated that so often on this board I see people praising, or at least strongly supporting, anyone who asks about going beyond the treatments that their doctors recommend, but if someone posts questions about the possibility of doing less treatment, the reactions are generally much less favorable.

I've seen a lot on this board over 7 years. Enough to make me worry both when I see under-treatment and when I see over-treatment. The possible implications of under-treatment are pretty obvious and usually are voiced by many people in many posts, whenever someone is considering a treatment plan that appears to be an under-treatment of her diagnosis. The possible implications of over-treatment are less obvious and are rarely voiced. But as we know, every treatment comes with side effects, including a risk (usually small) of serious side effects. If you are going to benefit greatly from a particular treatment, then there's no point in focusing on those side effects. But if you are going to get only a small reduction in recurrence risk from that treatment, then it's very possible that you might put yourself at a greater health risk from the treatment than from the disease without that treatment. And that's sometimes the case with low risk DCIS.

I realize that we don't have all the answers on what makes a case of DCIS low risk. But there is a ton of research out there. Lots of evidence on which to make a decision. It's not perfect information, and it's not a guarantee, but there is enough to allow someone to make an educated decision on whether her risk is high enough to warrant the potential side effects of a treatment, or low enough to pass on a treatment. If someone wants to look at her options, if she wants to do more than just nod up and down and accept what the majority of doctors recommend, I support that. I encourage that. I'm not passing judgement on what her decision should be; I just don't want to discourage someone from looking into her options.

I think what voraciousreader said is really interesting. BL, as a medical researcher, your knowledge is invaluable. As a researcher, you have very specific, very high standards, and that shades your comments. I come at this from a completely different angle, and of course my background shades my comments too. I have no medical experience, but I have a research background. In my world, it was very rare to get any result at the 95% confidence interval, which is the bar that medical research must pass. Most decisions I've made were made based on the 90% confidence level; often even 85% confidence or 80% confidence would be enough. So I'm willing to accept more of a gray zone. Translating that to what I've seen of breast cancer research, I figure in a world where our knowledge expands and changes every day and yesterday's 95% confidence result is refuted by tomorrow's 95% confidence result, we might as well accept that nothing is certain and that we have to make our decisions today based on the best information that we currently have. Even if that information is imperfect or incomplete.

I don't want to discourage someone from investigating what might be a very reasonable option just because the data isn't perfect and definitive. So that's what's been in the back of my mind as I've been posting here. And I think that's what's behind the NCCN guidelines too, when they suggest that low risk DCIS patients talk to their doctors about whether or not radiation is necessary. The majority of doctors may still be recommending rads, but the NCCN is encouraging patients to make this more of a discussion.

In the meantime, we haven't heard from MMulder, who started this recent discussion. I hope that she's doing well and getting the information she needs to make her decision.

MMulder · January 2013

I have finally read all of these comments. It is extremely overwhelming. I read somewhere today that this is one of the most difficult breast cancers because of this exact decision. I don't know if that is true but I know this is very hard. My life has changed so much in the way I view those with cancer and my own life. I am still not sure what I am going to do but I do know that the first RO didn't know near as much data as my husband (who is a software engineer and just did his own research because I couldn't do it emotionally) and she was very threatened. The 2nd RO was wonderful and was supportive of what we decide but was concerned because I am 44 even though I had good surgical margins and etc. Anyway, thank you for your comments. We are reading like crazy. I have found that everyone in our area recommends radiation no matter how small or big the DCIS.

mrsbeasley38 · January 2013

I had low grade DCIS , I was 44 at the time , not in menopause, healthy no other history of issues with cancer or my heart or lungs. I did have radiation and there are many links to articles on this website where you can compare benefit vs risk of treatment.

kat526 · January 2013

what did you end up doing?

I am now in that spot, where I had a small dcis, stage 0, and large enough clear margins with lumpectomy and no node involvement and am more afraid of radiation than a recurrance, I don't want to do rad. I am going to the radiologist next week, but I"m sure they will push it since this is in other breast, the other 14 years ago done with mastectomy....

I don't want to do radiation and already had said no to tamoxifen years ago.. I am more concerned with side effects and if I need further surgery down the road radiation compromises plastic surgery with mastectomy....

I hope I don't meet with resistance with the dr. and /or get scared into it, however with my lifestyle I can't even fit it into my schedule.

MMulder · January 2013

they scared me to death but my husband kept me on track. I will be talking to Dr. Lagios next week. Expect he will say no rads. It really is a personal decision. I feel for u. Bit is torment. Good luck.

Rhiannon78 · February 2013

Hi all: just chiming in as my situation/DX is very similar to the orgininal poster's. I, too was hoping to avoid rads but was open to doing them if my RO recommended them. He did not. In fact, what he said was, if you were my wife, I'd recommend the same thing-no rads. he said if I "insisted" (because of being extremely risk adverse, I imagine?), he would do a short course of partial breast irradiation. He even said (in front of my MO!) that he would skip Tamox. She has left the decison up to me, but said that for someone like me, she waffles all the time and said 8 out of 10 times, she'd say to skip it.

Bear in mind, this is a large, well-respected facility in Northern CA that has won awards for breast care, and my impression is that they are in many ways very "traditonal" ( e.g. Aggessive) when warranted. I consulted with Lagios and he also said no rads/no Tamox. Interestingly enough, Lagios gave me a higher score on the VPNI than my RO did.

The way I understood it from my MO was that the VPNI is not more widely used because one must have absolute confidence in the pathology report. i had 4 different opinions on mine. Imcluding UcSF and Lagios, as well as 2 from Kaiser.

So I would argue that the trend of no rads for small amounts of low grade, single focus DCIS is becoming much more mainstream, especially when there a high degree of confidence in the path report. Good luck with your decision!

MMulder · February 2013

Rhiannon, thank you for your post. In my husband's research he found that years ago a mastectomy was standard for DCIS. How sad is this?! He believes in the future, very soon, that foregoing rads will be the norm for noninvasive DCIS. I am also impressed that you sought out 4 opinions. I think my family thought I was going overboard with 3. My first 2 (at different hospitals) were definite for rads. They both admitted that they just followed the standard of care which is radiate for everything. You know the montra something like, "Radiate 12 to help 1." I just didn't believe I needed rads with my diagnoses so I consulted with Lagios. I just received my written report just last night and sure enough he does not recommend rads for me. We will talk with him on the phone tonight. But, I am being proactive about my health much more now that ever before. We are eating clean (avoiding estrogen causing foods) and reading as much on nutrition as we possibly can. My husband and even my 16 and 10 year old boys are on board. We are also consistently excercising which helps get rid of fat that also stores estrogen. I feel good about my decision and plan on eating and living healthy.

MMulder · February 2013

Rhiannon, thank you for your post. In my husband's research he found that years ago a mastectomy was standard for DCIS. How sad is this?! He believes in the future, very soon, that foregoing rads will be the norm for noninvasive DCIS. I am also impressed that you sought out 4 opinions. I think my family thought I was going overboard with 3. My first 2 (at different hospitals) were definite for rads. They both admitted that they just followed the standard of care which is radiate for everything. You know the montra something like, "Radiate 12 to help 1." I just didn't believe I needed rads with my diagnoses so I consulted with Lagios. I just received my written report just last night and sure enough he does not recommend rads for me. We will talk with him on the phone tonight. But, I am being proactive about my health much more now that ever before. We are eating clean (avoiding estrogen causing foods) and reading as much on nutrition as we possibly can. My husband and even my 16 and 10 year old boys are on board. We are also consistently excercising which helps get rid of fat that also stores estrogen. I feel good about my decision and plan on eating and living healthy.

MMulder · February 2013

kat526, what did you end up doing?

Beesie · February 2013

This is such a hot topic that I'm always interested when new people tell of their discussions and the recommendations of their doctors. Rhiannon, very interesting that your RO actually recommended against rads - more doctors seem to be accepting this option for women who have small amounts of low grade DCIS, but few are actually at the stage of making a recommendation against rads.

MMulder, I'm glad to hear that you got the answer that you were hoping for from Dr. Lagios. Let us know if he provides any further details in your discussion with him tonight.

Rhiannon78 · February 2013

Bessie, I too was a bit surprised that my RO actually recommended against rads. I thought he would at least put it out there and try to sell the overall 50% reduction benefit. My guess is that with all my factors: grade, size, margins, my age almost 53), the fact that he knows that I will be very on the ball with my follow-up care & diet, the fact that I did tons of research and came to him with thoughtful questions, etc. he decided that I was the kind of person who would prefer to not do something unless a very clear benefit would be achieved. He is also a cancer survivor himself, and is fairly young and forward thinking.

I have to admit, I still am a bit nervous...I will be having an excisional biopsy on the left in a few weeks (so far diagnosed "only" as ADH). I have to say, if anything worse comes out of that pathology, I will re-think both rads and Tamox, but at this point, I am sitting with this decision to forego adjuvant treatment for a few weeks to see if I am realy OK with it. I would hate to go through all this again, but like you have previously posted, I feel that if I should get a recurrence or new primary, it will likely be caught very early.

The only thing I am still struggling with is having an MRI done. Lagios recommended that (but he suggested it as a way of avoiding surgery on the left side, and I am far too paranoid to not want to get that junk out and tested!). My Kaiser docs don't feel that an MRI would give them actionable info in my case, and in fact seemed mostly concerned about false positives that would set the wheels back in motion for additional (and most likely unnecessary) stereotactic biopsies. But they have ordered it for March once the area has calmed down from the biopsies/surgery (and before the procedure for the left would be done). Right now, my gut feel is to hold off on the MRI, do the excisional biopsy on the left (the lumpectomy on the right side was very uncomplicated) and go from there.

I would love to hear any thoughts on the value of MRI in a case where it appears that I have very small affected areas? By the way, these boards have been invaluable to me, and Bessie you in particual have always appeared to be a well-informed voice of reason. Thanks!

ballet12 · February 2013

Hi Rhiannon78, I'm wondering why they would do the MRI before excisional biopsy of the left side, if they are not concerned about the right side. It almost seems like if they wait until after the excisional biopsy on the left, and if it turns out to be DCIS (I pray not), then they would need to do the MRI to possibly help determine the extent of the DCIS on the left breast. I would totally agree that you should have the ADH removed surgically. My DCIS was found after excisional biopsy for ADH (as has been the story for many of us), and I had lot more of it than was visible on imaging (any imaging including MRI). Good luck! Glad you don't need to do rads. I just got through it today! I'm tired but happy it is done. I didn't have to obsess about rads. My situation was more clear-cut for the need for it, but I am going to obsess about the endocrine therapy.

Beesie · February 2013

Rhiannon, I'm another one whose DCIS (plus a microinvasion of IDC) was found during an excisional biopsy after a needle biopsy had found ADH. There is just no way that any screening/diagnostic tool, even an MRI, can tell you for sure whether an area of suspicion is all ADH, or if it includes some DCIS, or even if there is a small amount of invasive cancer in there too. So as much as I think that women should avoid having unnecessary biopsies and particularly, surgical biopsies, if ADH or ALH has been found in a needle biopsy, I think it's wise to take the next step and have all the suspicious tissue removed and analysed. So I'd make the same decision as you to have the excisional biopsy.

As for the MRI, I found mine to be very helpful. In addition to the finding of ADH/DCIS/Microinvasive IDC that my excisional biopsy uncovered, I'd also had a stereotactic biopsy for calcs in my other (left) breast. That biopsy was benign, but over the years I'd had lots of other issues with my left breast - fibroadenomas, cysts, fatty deposits, etc.... Prior to heading in to surgery, I was wondering if I did have problems with only the right breast, or could the left breast also be hiding something? My MRI cleared that up for me. It showed that my right breast was full of "stuff", all of which turned out to be more DCIS. But my left breast was completely clear. So that gave me the push I needed to agree to the MX on the right side, and to feel comfortable with having a single mastectomy only, and not a bilateral. So I'm sold on MRIs!

So for what it's worth, particularly since you are considering passing on rads and maybe passing on Tamoxifen, I think that having both the excisional biopsy and the MRI makes sense. That's what I would do. I would be delighted to be able to pass on rads and Tamox, but I would feel a whole lot better about that decision if I had the reassurance of the clear biopsy and a clear MRI. And if it should happen to not be clear, then I'd deal with that, whether it meant another biopsy (hopefully not), or deciding to go ahead with rads and/or Tamoxifen. That's how I'd see if for myself.

The most important thing for you to remember is that you have to make whatever decision you are most comfortable with, the one that lets you sleep well at night and doesn't keep you up asking yourself either "did I do the right treatments and did I do enough?" or "why did I go ahead with that treatment when I didn't really think it was necessary?".

Good luck with your decisions and with the biopsy... and possibly, the MRI!

Rhiannon78 · February 2013

Ballet12 and Bessie:

You both make great points. The reason that I am confused/hesitating on getting the MrI before the surgical excisin on the left is as follows:

1. MRI was not recommended/done prior to right side DCIS surgery, and as it turned out, it appears that they got it all with wide margins (path report said maximum extent was 4mm).

2. The reco for MRI was made by Lagios after reviewing the pathology from both right (surgical path) and left (stereo biopsy path) primarily as a way for me to avoid a sugical excison on the left. I've already decided that I WILL have the excisional biopsy done no matter what since I would be too worried of something worse lurking there. somthat reason goes out the window!

3. My breast surgeon and RO agreed to order that MRI before surgery on the left, primarily because I pushed them after consulting with Lagios and not because they feel it is in any way necessary, same as they felt about the right breast.

4. Since my right breast will need to heal more before doing the MRI so as to not get everyone all riled up about blood vessel activity leading to false positives, this means I would be putting surgery on the left off until April. Part of me just wants to get it over with!

5. So, in conclusion, while I understand that MRI can be helpful in some cases (as in yours Bessie in terms of UMX decison for what turned out a breast full of DCIS), there is no real reason for me to think it will actually be helpful for me at this point. based on the diagnostic mammo and stero biopsy, they think the extent the ADH in my left is even smaller than the DCIS in the right!

So those are the reasons I am hesitant about doing the MRI now, instead of possibly waiting and only doing one IF what is in the left breast is worse than they think it is. That and the out of pocket cost:-)

I likely will ask for an MRI 6 months out from surgery just to have a "baseline."

MMulder · August 2013

I forgot to log on and tell about our experience with Dr. Lagios and it has been months. He was so kind and took so much time with us. He is a true expert. He truly knows about DCIS! He recommended that we NOT do radiation and he basically said Tamoxifen was a waste of time and pain. He said there was no need to put myself through the side effects and all the meds that try to counter act the side effects. He said he doesn't see the proof that it really works after many years of research. I am so young I decided to take his advice. I did surgery with no radiation and I did not take the Tamoxifen. I have two friends right now suffering on it. We all have to make our own decisions. They both had DCIS, one had a single masectomy and the other had lumpectomy and radiation. One thing I have learned that is very important...we cannot make the decision for others. We should not every make people feel badly for their decision. I have encountered people like this face to face in my journey. It blows my mind. We get the information and do the best we can to make the decision that is right for us.

Rhiannon78 · September 2013

Hi All, I posted this under a new topic, but as it is appropos to the discussion here, I thought I would post again.

http://www.obgynnews.com/specialty-focus/breast-cancer/single-article-page/perioperative-mri-fails-to-reduce-recurrence-risk-in-women-with-ductal-carcinoma-in-situ/67b20bf77daaf0a7284cb45a5f212cff.html

To follow up from my last post, at the urging of Dr. Lagios (who I believe in general feels that MRI is a better diagnostic tool than mammo for DCIS), I did end up having an MRI in April of this year, 4 months after my right side lumpectomy. The good news is that the right breast appears clear. They did find an area that they want to follow up on in my left breast, interestingly enough on the complete opposite side of where the needle biopsy identified ADH on my left side back in Nov. 2012! The breast surgeon was not alarmed and just said that we would look at it again n 6 months.

I have decided to not assume that I have a left breast full of ADH/DCIS on the left, but instead assume that the smaill amount of ADH found on the left at biopsy was likely removed at the time and that this new area is basically nothing. My breast surgeon didn't see any calcs in the post-biopsy mammo on the left side, so she suggested that with such a tiny area, it may have gotten "sucked up" in the biopsy.

I think my follow-up MRI will be in October, and another mommo around that time as well. On the advice of my RO, I di not have radiation, and ultimately have decided not to take Tamox at this time either. I may change my mind on that front at some point, but for now I am just living my life and find that I do not dwell on this too much.

Cheers!

april485 · September 2013

I agree with you MMulder. Dr. Lagios did not think I needed rads either, but I decided to have them anyway since I was offered a clinical trial and was able to get it done in one week instead of 6.5 (dose dense 2 x per day x 5 days for 10tx's total) because my own research leads me to believe that Dr. Lagios is too conservative in terms of DCIS treatment.

I did not want to take a chance and not do anything but surgery but it was my PERSONAL decision to have rads and I respect all those that decide what is best in their case. I am also taking and AI and am struggling with this in a big way with side effects up the wazoo, but I am one who wants to throw all the weapons at the disease to ward off recurrence and/or a new cancer in my other breast or the same breast. It is my nature to do it all I guess.

Did I over-treat for DCIS? Maybe yes and maybe no. Either way, I wish all of you the best of luck and pray that none of us ever have to hear the words "you have cancer" ever again.

besa · September 2013

A study that just came out today on the topic of treating DCIS with radiotherapy......

http://jco.ascopubs.org/content/early/2013/09/16/JCO.2013.49.5077.abstract?cited-by=yes&legid=jco;JCO.2013.49.5077v1

http://www.sciencedaily.com/releases/2013/09/130918101900.htm

"Breast Conserving Treatment With Radiotherapy Reduces Risk of Local Recurrence

Sep. 18, 2013 — Results of EORTC trial 10853 appearing in the Journal of Clinical Oncology show that breast conserving treatment combined with radiotherapy reduces the risk of local recurrence in women with ductal carcinoma in situ (DCIS). The incidence of DCIS has been increasing in the past decades, and this has been attributed to increased detection through breast cancer screening using mammograms. In the EORTC study, adjuvant radiotherapy after local excision reduced the incidence of both in situ and invasive local recurrences by a factor of two and resulted in an overall lower risk of mastectomy.

Following the introduction of radiotherapy combined with breast-conserving surgery for operable invasive breast cancer in the 1980's, several trials were launched to investigate the addition of radiotherapy to local excision of DCIS. These trials showed that radiotherapy reduced both the risk of DCIS and invasive local recurrences. Now the long-term outcomes of local recurrences and survival in women receiving radiotherapy in combination with breast conserving surgery for DCIS have been investigated at a median follow-up of 15.8 years.

Dr. Mila Donker of The Netherlands Cancer Institute, Amsterdam, and lead author of this paper says, "Survival after treatment for DCIS is excellent. Therefore, the question rises whether the current treatment for DCIS (local excision and adjuvant radiotherapy of the breast) is overtreatment. To answer this question, not only long-term data about local disease recurrences and prognosis are important, but also information about the prognosis and treatment in case of recurrence."

Between 1986 and 1996, the phase III EORTC trial 10853 randomized 1010 women with complete local excision of DCIS to no further treatment (503 patients) or radiotherapy (507 patients). The risk of any local recurrence was found to be reduced by 48% (HR: 0.52, 95%CI 0.40-0.68, P<0.001) in the patients who also received radiotherapy. The 15-year local recurrence-free rate was 69% for the group of patients receiving breast conserving surgery alone, but this increased to 82% for the group of patients who also received radiotherapy, and the 15-year invasive local recurrence-free rate was 84% versus 90%, respectively (HR: 0.61, 95%CI 0.42-0.87).

The differences observed in local recurrence did not lead to differences in breast cancer specific survival or overall survival, but patients with invasive local recurrence did have a significantly worse breast cancer specific survival (HR: 17.66, 95%CI 8.86-35.18) as well as overall survival (HR: 5.17, 95%CI 3.09-8.66) than those who did not recur. Thus, an invasive recurrence resulted in a worse prognosis.

A lower overall salvage mastectomy rate after a local recurrence was also observed in the group of patients who also received radiotherapy, 13%, than in those patients who just received breast conserving surgery, 19%. Thus, radiotherapy after breast-conserving surgery for DCIS resulted in an overall lower percentage of patients who were treated with a mastectomy after a local recurrence.

This study highlights the importance of conducting long term follow-up."

Beesie · September 2013

This study is a a longer term extension (to 15 years) of a study that had previously been reported. It's good to see that the results are completely consistent with the previously reported results and with the results of other studies on rads and DCIS. Rads reduces recurrence risk by ~50% (actually 48% in this study).

What this study doesn't address (or at least what's not mentioned in these reports) is whether there is a group of patients with DCIS who face a low enough risk of recurrence with surgery alone that the 50% reduction in recurrence risk from rads provides a very small absolute benefit, one that is less than the risks and side effects from the rads themselves. So in that case, a benefit vs. risk assessment would say that the risks from rads are not worth the benefit.

I strongly believe that there are cases of DCIS like this. For example, if someone has just 3mm of grade 1 DCIS and comes out of surgery with 1cm margins, her recurrence risk with surgery alone might be as low as 3% or 4%. A 50% reduction in risk from rads would therefore only provide a 2% absolute risk reduction. The risk of serious and/or long-term side effects from rads probably is in about the 2% range, and that doesn't consider the less serious and short-term side effects. So if it were me and that was my diagnosis, even knowing that rads could provide a 50% reduction in recurrence risk, I would opt out.

On the other hand, if I had a 15% risk of recurrence, I wouldn't hesitate for a second about taking rads. So to me what's important is that each case be evaluated individually, with consideration to the pathology of the DCIS, the surgical margins, the age of the patient, the overall health of the patient, and risk tolerance (or aversion) of the patient. There is no 'one size fits all' answer to the question of whether rads is necessary or even advisable after a lumpectomy for DCIS.

MMulder · September 2013

I am one of those people Beesie described above. My DCIS was 3mm (microscopic) and my margins were 9 cm x 4 cm x 6 cm. What would they be radiating? Clean tissue? Anything past 2 cm is considered a new cancer. My smallest margin was 4 cm. This is exactly why I decided not to have radiation. BUT, as my husband and I were discussing last night, every person has to make their own decision and have peace about it and be able to live with it.

anyone with low grade dcis not having radiation

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