DCIS: choosing surgery only, followed by monitoring
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hi- just curious if you were given percentages of how much the radiation or pill would cut recurrence chances?
I am trying to get those numbers myself, as my Dcis was so completely removed (they say) at biopsy and the lumpectomy showed nothing at all. As a result, I have been given a option out of radiation which is great, but also scares me. Same with the hormone pill. Thanks!
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There have been lots of studies that show that rads cuts local recurrence risk by ~50%.
Similarly, hormone therapy reduces local recurrence risk by 40%-45%.
And for the years that you take it plus another 2-3 additional years (so 7-8 years if you take it for 5), hormone therapy also reduces the risk of a new primary by about 40%.
Those are the relative risk reductions. The absolute risk reduction for each individual depends on what level of risk she starts out with. For example, if someone has a 20% local recurrence risk after surgery alone, rads can cut that to 10% and the addition of hormone therapy can reduce the risk further, down to about 5.5% - 6%. If the recurrence risk after surgery alone is higher, the absolute benefit of each treatment will be greater. And if the recurrence after surgery alone is lower, the absolute benefit will be lower. So everyone's benefit is unique to their themselves, based on their pathology, surgical margins and age
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Hi BB3312, Beesie, as always, is spot on correct.
To get a ballpark idea of your risk you can google the Sloan Kettering nomograph and enter your info. It's an algorithm that allows you to plug in options for treatment so you can see possibilities. For a better picture of individual risk you can opt for genomic (not genetic) testing. This takes your actual tissue and examines it in a lab for a personal risk assessment. There are several tests available, my BS preferred the Oncotype DCIS, yours may have a different opinion. The nomograph had my risk at about 13% over 10 years, my Oncotype came back at 7% chance of it coming back at all over 10 yrs, 3% risk of invasive, 4% as another DCIS. Both the BS & MO said the genomic test was more reliable. The MO said with such a small statistical advantage, he was fine with active surveillance.
Glad you're doing your homework, your docs should be a great resource. Best of luck choosing the best path for you. Please let us know what you decide.
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thank you. My dr had not heard of an oncotype for Dcis. It’s so upsetting. Are you being treated at a major teaching hospital?
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did they give you percentages of even further out. Lifetime?
No one here has heard of the Dcis oncotype. My tissue sample is tiny from the biopsies and the lumpectomy tissue is negative. I don’t think there’s much left to send.
Are you being treated at a teaching hospital? Thanks!
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BB3312, there absolutely IS a DCIS Oncotype test:
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I don't think any test gives lifetime odds, 10 years is standard. No teaching hospital, very lucky to have an excellent, well informed BS and a great local suburban hospital.
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I think it is also very important to add that lifestyle and health changes are not factored into any of this, at least not yet anyway. I discussed this with my medical oncologist and he stated he did not believe any of those variables were factored into the statistics. Things like changing personal products (getting rid of products containing perfume, phthalates, and a slew of other toxic chemicals), toxic household products (including laundry detergent, fabric softener, plug-ins, dishsoap, etc), their entire diet (moving to organic as much as possible and removing heavy fats, enriched flour and cereals, dairy products, unfiltered water), losing weight, and exercising at least 4 days a week. After reading one research article after another, I do not see that any of these variables have been considered. This is where I become troubled. I do not think DCIS, or any type cancer for that matter, should be a one size fits all treatment. We can look at that 30% chance of increase with lumpectomy only all day long but we are not looking at what moved that 70% into the 70% category.
Until there is solid research on DCIS in its entirety, meaning they are including all of those factors and then some into their statistics, it is really hard to believe what is accurate or even close to accurate.
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Thanks for this thread. My 2nd lumpectomy was a month ago (which left me with an inverted nipple, but that's a tangent...) and I am now deciding on radiation. I won't take Tamoxifen (my surgeon agrees with that decision but others have recommended it). I have been told my chances of recurrence are about 20% w/o radiation, 10% with radiation. I might be able to live with that risk... but am undecided. I have some concerns and find the idea that DCIS is "over-diagnosed" compelling as well, but it seems the jury is out until more studies come in and that will take years. Whatever I choose re: radiation, it's good to know there is support - and I certainly support anyone who chooses that path.
@Maizey77 I agree that there are other ways to lower recurrence rates, and I am slowly learning about these. I appreciate your list. So much to learn and think about... so little time
Hugs all around! Thanks again @yogamom2 and all who posted here.
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I just met with the BS for my post-op appointment and am feeling let down. He told me there was no way to calculate my particular risk recurrence and can only go by what is typical of the research which says I would have a 20% chance of recurrence. He referred me to medical and radiation oncolongists for consults but basically assume I will opt for both radiation and tamoxifen. I do not want to do either but do not want to kick myself in the future if it comes back and I did nothing.
It just seems like they’re treating my DCIS as not even being cancer yet they want me to do all of this stuff that will cause potential harm. So frustrated! I know I’m very fortunate to not be dealing with what most breast cancer patients deal with but I’m still wishing I didn’t have to make these chocie
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Hello JLall & Cmck, It seems you are both facing a similar dilemma. The most important thing is to be comfortable with your decision, ultimately this is your life and, no matter what you choose, your risk. If a second opinion is available to you, it may be helpful --especially if you are able to find a doc willing to review each tx option and the risks associated. I'm not sure why a BS said there was no way to calculate personal risk as there are several lab tests designed to do just that. Hang in there, do your research and push until you have enough info to do what's right for you. We're all here if you have questions we can help with or to support whatever path you take.
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Cmck1973, surgeons operate. Oncologists do the rest. So your surgeon is not the doctor to advise you about radiation and hormone therapy, nor is he the expert on recurrence risk. The person to talk to about all that is the MO. If it's not offered, ask for the Oncotype DCIS test. The results will tell you your 10-year risk of any recurrence (DCIS or invasive) and your 10-year risk of an invasive recurrence, based on the genetic make-up of your tumor.
Here is a copy of a sample report:
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oh thank you both for the information. That makes me feel a little better. I will meet with the MO and hopefully get better response and feel more comfortable with decisions
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Thanks Yogamom2 for the support & Beesie for the info - all SO helpful!
Sorry for hijacking your thread a bit. I will be back if I do no radiation
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Hello everyone. I am SOOO happy to find a this thread and this group of women who have decided not to do radiation or hormone therapy. I was diagnosed 11/2020 with DCIS and had surgery 1/8/2021. I have done so much research on DCIS and have purchased several books looking for answers to make the right decision for me. My margins were clear but I have one margin that is 0.1mm and that is what I'm struggling with. My Oncotype DX DCIS score came back 11%, 6% invasive RO and 5% noninvasive RO. I am getting further genetic testing due to the fact that my mother had stage 1 BC at age 78 and a cousin on my mother's side with DCIS stage 1 at age 74 and was diagnosed in early 2020. I'm 59 so my BC has showed up much earlier in life. If my genetic testing shows this BC as inherited, I may reconsider radiation. My mother did radiation and hormone therapy with no side effects and my cousin had no radiation but is on hormone therapy. My BC surgeon said since I did not want to proceed with a 2nd surgery to obtain larger margins, and no radiation or hormone pill that I will just get yearly mammograms for screening. I'm seeing from this thread that maybe some of you had more screening than that. Can anyone let me know what their screening plan is and for how many years until they just get yearly mammograms?
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littlehaledc, welcome!
If I may ask, what was the grade of your DCIS, and how large was it? My diagnosis was back in the days before the Oncotype test for DCIS was available, and back then what we used a lot when deciding between lumpectomy alone, lumpectomy + rads, or mastectomy, was the Van Nuys Prognostic Index. This index assigned points to age, tumor grade, tumor size and margin size and based on the point total, recommended the surgical plan. Here is a chart of the model:
I'm not understanding your comment about considering rads if it turns out that your cancer is genetic. Can you explain this more? To my understanding, an inherited genetic mutation increases your risk to be diagnosed, either this first time, or possibly again. Once you are diagnosed, if the cancer has been found while it is still DCIS, I don't believe that there is any difference in prognosis between those who have an inherited cancer vs. those who have a random diagnosis. It is the pathology of the DCIS and the surgical margins that determines recurrence risk. Your Oncotype recurrence risk estimates wouldn't change if your cancer is inherited or not.
What I'm not sure about about however is whether your Oncotype risk estimates are reliable with surgical margins of only 1mm. I recall that when the Oncotype test for DCIS came out in 2011, it was based on the E5194 study, which did not include any DCIS patients with margins less than 3mm in size. Other criteria for the trial were that all patients had low or intermediate grade DCIS that was ≤2.5 cm in size or high-grade DCIS that was ≤1 cm. Those criteria were transferred over to the Oncotype test, so for many years the Oncotype DCIS test was not run on patients who did not meet that criteria. This changed a couple of years ago when a second study was used to validate the Oncotype results, the Ontario DCIS Cohort Study. This study excluded only those with positive margins, so there where patients in the study who had more narrow margins. In fact the study notes that their patient base was broader than the E5194 study, and mentions that 45% of the patients in their study had margins of 1mm - 3mm (i.e. smaller than anyone included in E5194). But of that 45%, how many only had 1mm margins? That data does not appear to be available in the public domain. What we know is that in total 773 patients were used to validate the Oncotype for DCIS scores/recurrence risks. Of these 773 patients, 327 patients from E5194 and 245 (55%) of the 446 patients from the Ontario DCIS Cohort Study had 3mm+ margins. In total then, 572 (74%) of the 773 patients had 3mm+ margins. Of the remaining 201 patients who had margins between 1mm and 3mm, how many just had 1mm?
I admit to some bias here. I've been hanging around the DCIS forum for years, and surgical margin has always been considered critical. This is confirmed by the NCCN Treatment Guidelines (the gold standard used by most doctors in North America) which specify minimum 2mm margins for DCIS for patients having radiation, and say that for those who have a lumpectomy alone, the optimal margin width is unknown, but should be at least 2mm.
I understand your desire to pass on more surgery, rads and anti-hormone therapy. If your DCIS was very small and low grade, then as per the VNPI, even with the 1mm margin, your recurrence risk might be quite low. But if your area of DCIS was larger or higher grade, your risk of recurrence might be much higher than your Oncotype test result suggests, because of the narrow margin. Just something for you to consider.
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Thank you Bessie for all your information! I just figured out how to make my DX public. The grade on the pathology report only states low to intermediate grade. It also states comedo-type necrosis is present. My RO said he was not concerned with the comedo-type necrosis but everything I read on that reflects that it is a more aggressive cancer. The size was 1.5 mm. Everything I have read does indicate the 2mm min margin as standard of care. You make a good point on the genetic testing. I guess it will be another piece of the puzzle of possible recurrence if I carry a gene for breast cancer. I will review the study you cited in regards to the Oncotype DCIS test. I was under the impression that as long as the margins were clear, that the score was fairly accurate.
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littlehaledc, the thing about the Oncotype DCIS test is that I don't know if it would be accurate or not with 1mm margins. Since treatment guidelines for DCIS suggest minimum margins of 2mm, there probably weren't many patients in the studies that validated the test who had margins are narrow as 1mm. So it's impossible to know if the results would be accurate or not. Based on other studies, it's reasonable to think that recurrence risk might be higher than projected when the margins are only 1mm.
This report is quite recent, from 2017:
DCIS Margins and Breast Conservation: MD Anderson Cancer Center Multidisciplinary Practice Guidelines and Outcomes
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5604195/
"For patients with no DCIS at the inked margin who receive RT, there is no significant increased risk of local recurrence at 10 years follow-up. For patients with close margins (< 2 mm) not receiving radiotherapy, local recurrence is significant and we recommend re-excision for wider negative margins."
Re the genetic testing, after our breast cancer diagnosis, we face two future risks. The first risk, and the one that's front of mind, is the risk of recurrence. This happens when a few rogue cells from the original cancer remain in the breast after surgery and aren't killed off, either by radiation or anti-hormone therapy (or chemo, for those who have invasive cancer and receive chemo). Eventually those few cells start to grow and multiply, and the cancer recurs.
But even for someone whose cancer was successfully treated and who never has a recurrence, there is a second risk, which is that a new breast cancer might develop. Anyone diagnosed with breast cancer one time is higher risk to be diagnosed again at some point in the future. So just by virtue of having this diagnosis, your risk to get another diagnosis, a new primary breast cancer unrelated to this diagnosis, is higher than average. This new cancer could develop in either breast and it could be similar to this diagnosis, or very different.
If you find that you have an inherited genetic mutation, that wouldn't affect your recurrence risk related to your current diagnosis, but it would further increase the risk that you might develop a new primary breast cancer at some point in your life.
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I am 73 years old. I just had a lumpectomy for DCIS. Stage zero. ER receptor 8. High nuclear.
The first instinct is to avoid radiation. The low ER receptor indicates no need to take hormone blocking drugs. I am five days postop.
I will meet my surgeon for the postop follow up on July 30, and then I will meet with the oncology radiation expert to discuss radiation. I’m sure they’re going to push me to do that because of the nuclear value, but it made it only reduces the chance of recurrence by 30%. Radiation can cause damage to the heart the lungs the thyroid the bones and I’m not willing to add another issue to my health at this stage of my life.
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@jcress - I’m sorry that your diagnosis brought you here, however I think you will find a lot of good information. Others will come along who understand the medical aspects better than I. In the meantime, you may wish to check out some of the info on the site regarding studies on radiation for women over 70 as well as relative vs absolute risk reduction
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Hi Jcress! Hope you're recovery from surgery is going all right thus far! I did not have radiation due to other medical issues and thus risk of radiation. My surgeon told me I would need mastectomy (vs. lumpectomy) then, esp. given I'm post menopausal.... Have an open honest dialogue with the surgeon at follow-up, as well as radiation oncology. I'm glad you plan on meeting with radiation onc! I did that too knowing I was unable to have radiation - felt important to do due diligence. Also, if your area has photon radiation (I think I have that right....? proton radiation....?) it is supposed to be more targeted and less risk..... Please let us know how those appointments go.....
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JCress, my mother had breast cancer when she was 85, and had 33 radiation sessions, which is the long course. She hated it because it was a pain in the butt for her to drive to another town and back every day, but the actual damage from radiation was pretty minimal, just some slight skin darkening. She died at the age of 97 from completely unrelated causes. I had the same amount of radiation in 2018 when I was 68, and as far as I know, with no long-term problems. A little lung scarring showed up on CT scans in 2019 and 2020, but the latest one shows that has faded almost completely (the scans aren't because of the breast cancer, so that's not a standard follow-up).
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Hi all, Just an update since I started this thread in 2019. It is now 2021 and I am happy to share another set of clear, negative results from both mammo & ultrasound. Still hold my breath waiting for the test results but am happy with the decision I made 2 years ago. Hoping for continuing future good news and incredibly grateful for every moment of health I have. Wishing you all the best!
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Re radiation, I had it when I was 63 and that was 12 years ago. Lumpectomy, left side. I am fortunate, as so far, I haven't had any problems from radiation.
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Thanks. I will keep you updated.
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Had double mastectomy yesterday for DCIS stage 2. I could have done a second lumpectomy followed by daily radiation for six weeks. In a rural area, not an option if I want some semblance of a normal life.
PAin level this am between 1 and 2 Tylenol only. Norco through night. Doing better than I expected. I have a very high pain tolerance. But no square dancing for awhile.
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@Jcress. I am 71 and just finished lumpectomy on left breast for DCIS ER+/PR+ Intermediate Nuclear Grade. Oncotype DCIS Score was 16 which puts me in the middle of 'low risk' and VNPI scored me as a 6, which is high end of 'low risk'. MSKCC nomogram gave me 7%/11% recurrence at 5/10 years with lumpectomy only.I too do not want radiation as DCIS was right on top of fascia and there is no way to avoid heart radiation. However, I was pushed quite hard by BS to do radiation. Am having meeting with MO (a generalist/not BC specialist as in rural area) on Monday. Should be an interesting discussion as now I am thinking I don't want ER therapy either! I will try to post results.
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Update--meeting with MO was very short as he was unwilling to discuss having/not having any AI/Tamoxifen until I had a meeting with RO. His theory was that I had so many choices that I needed to be well informed. Makes sense, so I must 'check the box' before deciding about AI
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Researcher50, I was 68 when I had my left lumpectomy. I did 33 radiation sessions, I think 5 were boosts to tumor bed only. The radiologist assured me that there wouldn't be damage to the heart or lungs. A pre-op chest CT I had before the lumpectomy (because I was a smoker at the time) showed an aortic aneurysm, so I eventually saw a cardio-thoracic doctor. When I mentioned having had radiation, and what the RO had said, he shook his head and said "There's ALWAYS damage from it." I was pretty angry after hearing that, especially when my next CT (for an unrelated issue) showed something new on my lungs besides some nodules that are just sitting there. The reading radiologist said it looked like scar tissue from radiation. By now I was furious. But my CTs since then have shown that spot fading, and it's barely there as of the last one in June. And none of them have shown any damage to, or near, the heart, just my aneurysm (which seems stable, yay!). So maybe there's no permanent radiation damage after all. I just wanted to share this with you so you could know before you see your RO, and give you a chance to add any questions to the list you might already have. And maybe you'd want to talk to a cardiologist to get their input; mine has a PA who is great at answering questions, better than the doctor is.
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I think I may be joining those of you on this thread with choosing surgery only for my 3mm intermediate grade DCIS on the right. I had lumpectomy in August, and am in my early 40s. They removed some ALH lesions too from my left. A lot of pressure to do the rads, and the Tam. I've started a baby dose of the Tam just this week, but am feeling more convinced that it might just not be worth the qol loss given how much longer I may live and a 4% 5 year recurrence risk. I can see that this thread has been quiet for a while; hoping there are some of you out there doing well and still happy with your decision.
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