Has anybody decided to do excision only? Or active monitoring?
I have no intention of having radiation or hormone therapy. I am considering lumpectomy only or active monitoring. Has anyone else chosen this route?
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I am strongly considering this as well. The effects of the rads and tamoxifen seem ridiculous to have to deal with just to lower my risk. I am meeting with my MO this week just to get all the facts, but I’m heavily leaning towards asking for an MRI just to be sure the mammo didn’t miss something, and then focusing on diet and exercise.
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I just had an MRI and there isn't evidence of a multifocal or multicentric disease--so just the single area that was found in my mammogram. I think I might be a lot older than you are though--I'm 65. I don't know much--but it sounds like that's a factor that needs to be included when making the decision. I also got genetic testing which was negative. My doctor really wants me to have radiation--but I'm thinking of asking for wider margins to ensure clean edges--and then just a little reconstruction because the location of the DCIS would make removal of breast tissue really noticeable. I've been in contact with a few ladies I know who have gone through radiation--it doesn't sound as bad as I expected, but they all complained loudly about the hormone inhibitors.
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Excision only. Didnt want mag seed/marker implanted for biopsy. (Yes, im one of those, youre not leaving anything in me especially if it can move). So i said take out suspect calcification (and anything else that didnt look right, which is why i hired her, breast surgeon, because all she does is work on breast with different stages of cancer and fired general surgeon, who wanted to go in like a car mechanic and would never have removed other suspect areas and who responded to my concern of marker moving with, who cares??). Breast surgeon did 3 areas for biopsy, two areas came back dcis. Went in again for clean margins on one area she thought looked suspect during first surgery. She understandably was conservative on the first go round, since it came up during surgery and had no support from mammo. Met with medical and radiation oncologist, pretty much armed with defenses as to why i would not do either. They listened and both were respectful and in my particular situation agreed. Once they picked up on my holistic view and knowledge, it appeared to clue them in to start talking about lifestyle and diet changes. Tamoxifen increases chance of ovarian/cervical cancer and radiation, i feel, is a nuclear option. You have one chance. So im putting it on a shelf and plan on avoiding as much estrogen in food, water and such out there thats feeding this too much estrogen in our bodies. And when i hit menopause, no man made estrogen for me. Hot flashes and night sweats? Ive been having those since my tubes were tied in my 20s. All my opinion, i wont tell someone else what to do, to each its own. I wish you well. Im still healing from second go round a week ago. Keep all options open, things do change.
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at6and7s: I am a bit younger, 48. I met with my MO and of course, she strongly suggested tamoxifen, if nothing else, at least a low dose. I still refuse. I went armed with a bunch of questions, some of which she answered, others that nobody in the medical community seems to have an answer for. This dx is quite frustrating I was researching and second guessing myself so much I finally decided to take a break from thinking about if for a couple weeks. Just now getting back on this website. My MRI is scheduled for a week from now, and I’m really hoping that’ll clear things up for me.
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I had a lumpectomy only after cacifications showed up on my mammogram in 2003 at the age of 48. It was medium grade and small, I don't remember the exact size, was around 4 mms. Closest margin was 9 mm. I was given all options and not much guidance to help me. I decided to forego tamox and rads. As of my last mammogram in 2019 all is okay. I'm currently 2 months overdue for this year's mammo and can't get there until the covid-10 restrictions are over which is very upsetting to me. I feel like I'm a ticking time bomb.
at6sand7s and khakitag - I'm wondering if you have any updates? I'm surprised you were able to get an MRI so soon after surgery. The breast surgeon I saw wanted me to wait a year after the lumpectomy, she said it took that long for things to calm down enough for the MRI to be accurate.
In retrospect the one thing I would have done differently is to see a breast surgeon rather than a general surgeon, but at the time I didn't even know such a thing existed. It was probably about 8 months after the lumpectomy when i finally did see a breast surgeon because at that time I was still waffling back and forth about what to do. It was a lousy first 8-9 months for me (emotionally) but once I saw her things started to improve.
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Since I'm not an expert in any of this stuff, I can only talk about my own experience with my own diagnosis. I can see that most of the ladies on this thread are what I (at 65) would call "young". From the research I've read--I do believe that if I were the ages y'all are--I would probably be more, rather than less, aggressive. In actuality, I got a second opinion and ended up taking a more aggressive route myself.
OldOakTree--my MRI was before surgery to make sure the mammogram didn't miss anything important. I went to a breast surgeon at very well respected cancer treatment hospital. After the genetic testing and MRI, she suggested I have a lumpectomy with radiation and hormone therapy. She told me that the area was still small and only had one focal point--and that mastectomy was not necessary as long as I followed up with the other therapy. I told her that I didn't want radiation or hormone inhibitors. Please understand that I am not saying those are not great therapies for other people--it was simply a choice that I made for myself.
So the choices I had were to go with this surgeon and get a lumpectomy +additional therapy (she didn't offer me anything else), just monitor, or go get a second opinion. I decided on the second opinion. My new surgeon was willing to offer me a range of choices, but he explained to me that if I didn't want additional therapies, then lumpectomy was not a good choice. He explained that until they pull out the breast tissue, and run the pathology--there's no way to know if the external tests are telling the whole picture. That's why they follow up with radiation and hormone therapy--because it's just too easy to miss something.
I decided to get a nipple-sparing mastectomy with immediate reconstruction and no additional therapy. With the cancer so early, I figured that this might be the best time to save my skin and nipple. However, my surgery was scheduled during the pandemic, in a city considered a hot spot--but being a small private hospital, they were willing to move forward. Their stance was that cancer surgery is not "elective". The trip there and back--is a crazy story for another time, but I had my surgery done on March 24th. My surgical team, removed my right breast and reconstructed it with my own tissue harvested from the belly.
I'm healing well. I have to go back for phase 2 in a few months so that they can match the two breasts and fine tune the scars. However, the breast looks natural and and I feel really good about both the medical and cosmetic results. The abdominal scar is very long, but hopefully as it heals it will improve.
After the surgery, the oncologist came in and talked to me about the pathology. He said yes, there was the area of dcis that showed in my mamo and mri. I had calcifications there. But he told me that there was a lot more atypical hyperplasia in other areas that would not have shown up. He told me that my decision for mastectomy turned out to be the right one for me. Now it's got me thinking that I should have just done them both--eek.
I am 4 weeks post op--and I'm starting to feel more normal.
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I'm considering skipping radiation and Tamoxifen as well. I'm now looking at having my third (!) excision/surgery on May 19 due to a too close margin and will probably have to make the decision about what's next sometime in June. It seems like such a "carpet bomb" approach to something that's non-invasive. Then again, mine's high grade/was deemed "aggressive." No genetic connection/tested negative for all the mutations. At this point, I'm "interviewing" three integrative docs. to see what I can do with nutrition and lifestyle as an adjunct to the conventional stuff (or in lieu of). So hard to know what to do. It just seems crazy to me to do so much more damage to my body that has the same mortality rate (1-2%) with the radiation and hormonal therapy as without. I'm 51, BTW.
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Idowns, think of radiation and hormone therapy not so much as a treatment for your current diagnosis of DCIS, but more so as a means of avoiding a recurrence, which could turn out to be a much more serious cancer. 50% of DCIS recurrences are not found until they have already developed into invasive cancer. While most of these invasive cancers are early stage, some are not. That's not to scare you (or anyone) but just a statement of fact. I've been here long enough to know a number of women who started with DCIS and ended up with an invasive recurrence and subsequently a metastatic recurrence.
That doesn't mean that rads or hormone therapy are necessary for everyone with DCIS. All DCIS is not alike. Some women have a small (3mm, for example) single focus of low or intermediate grade DCIS. Others have large multi-focal or multi-centric grade 3 DCIS with comedonecrosis. And some come out of surgery with wide surgical margins whereas others have minimally acceptable surgical margins. Depending on these factors, the recurrence risk after a lumpectomy (with no further treatment) can range from as low as 5% to as high as 50%. Rads cuts this risk in half, and hormone therapy halves it again. With a 5% risk, that's not much absolute benefit for either treatment but with a 50% risk (or even just a 25% risk), that's a significant absolute benefit. And when you consider that half the recurrences will be invasive cancer...
A handy tool to figure out your risk is the Van Nuys Index. Back when I was diagnosed it was used a lot; it's used less these days, but I still think it's useful to look at (add the points from each category to come up with a total score):
Given the relatively high recurrences rates for some within the intermediate group (27% on average within 10 years), the treatment recommendations were refined as follows: (Note that the recurrence rate in the Mastectomy column excludes patients with those scores who had a mastectomy - the high recurrence rate is the reason that a mastectomy is recommended.)
https://www.bmj.com/content/344/bmj.e797One additional consideration with regard to Tamoxifen is that it provides a secondary benefit, which in some cases might be greater than the primary benefit. Tamoxifen also protects both breasts against the development of a new primary breast cancer. Anyone diagnosed with breast cancer (including DCIS) one time has about double the risk of the average woman (who has never had breast cancer) to be diagnosed with breast cancer again - not a recurrence but a completely new separate cancer. This means that for someone who is 50, her risk to develop breast cancer again over the course of her lifetime is around 20%, or possibly higher if she has additional risk factors. Tamoxifen will reduce this risk for the years that you take the Tamoxifen, and the risk reduction benefit extends for another several years beyond that.
Lastly, for those questioning whether or not to have rads, the Oncotype for DCIS might be something to ask about: https://www.oncotypeiq.com/en-US/breast-cancer/patients-and-caregivers/stage-0-dcis/about-the-test
Not an easy decision, but one that should be made not based on generalities about DCIS but based on the specifics of everyone's own diagnosis, with consideration to personal risk tolerance.
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I am scheduled for my first appointment next week after two months of waiting - hoping that nothing gets postponed at the last minute. On the plus side, the delays have given me ample time to research pros and cons of different treatments and think about what matters to me - less risk or less long-term pain / better lifestyle. Right now, I'm willing to do the radiation but I'm not a fan of hormone therapy and am going to try to avoid it. Re: the radiation, I hope to be able to do the proton beam or brachytherapy, not whole breast, for various reasons - this is something I will question the providers about and ask why they would or would not recommend it. In my case, my out of pocket cost may be higher for the proton beam but if they think it is a viable option for me, I'm willing to pay for it.
I'm very curious to see if my mammograms will change at all since the last ones because I've been off of HRT for two months. I can tell a difference in my breast tissue - no longer sore and feel less dense. I'm also curious if they think my DCIS growth rate would be slower now that I'm off of the HRT, since it's ER/PR positive, and if they will be able to tell that after the surgery.
All of this said, I have small dense breasts - I'm assuming that I can do a lumpectomy but if I get the answer that it's not feasible, I'll have to do the mastectomy.
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Good morning - I'm a kindred spirit. 54, same diagnosis (wasn't tested for progesterone though, just estrogen and when I asked why not, they said they just don't do it when only calcifications are present??? I am in the Charlotte area). I'm getting the little monsters removed on 6/17 and if (WHEN) the pathology report comes back showing there were no surprises and it is truly non-invasive, I am also leaning toward monitoring. Menopause has to hit sooner or later and I'm very healthy, lots of exercise, good diet, and wine. (been lots of that lately) I'd like to ask if you'd share your latest since your surgery and what route you chose. My concern with radiation and drugs is the reduction in my quality of life and the fact that I am poisoning and putting drugs in my body. I have implants and have been told they are not the culprit but am not attached to them in the least anymore. I hope you got the best of news!
Kim
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Adding an update to this thread to see if conversation continues. I have just found out that I have been approved for the COMET trial that I applied to. It randomly assigns women with grade 1 or 2 DCIS to either surgery (+- radiation, +- endocrine therapy) or active surveillance (+- endocrine therapy). I was assigned to active surveillance, and am going to opt into endocrine therapy.
My preferred treatment changed once I had my appointments at a specialized cancer center. They found a second, small DCIS in the same breast (left), the largest is 2 mm. After ultrasounds and a MRI, they felt good that nothing else looked suspicious. Also, I was advised by my MO that my recent history of HRT could be a major part in fueling this disease, which I stopped using 2+ months ago. So, I have discontinued one bad habit. What's also new is that in my right breast, I have atypical hyperplasia, and this can be controlled by endocrine therapy. So, although I was adamantly opposed to endocrine therapy 3 months ago, after learning about my AH and the limited rads options for me, since I have small breasts, I completely changed my mind and realized for me, I have to live with the side effects of endocrine therapy because my breast tissue has disease and I'd like to avoid surgery if I can. I really want to keep the AH in check and endocrine therapy seems to be a way to do this without surgery.
I have been reassured that if anything changes in six months that looks suspicious, I will be biopsied, and I can pull out of the COMET trial if I like at any time. Also, they will kick me out if findings are suspicious :-) For me, my view is that I'd like to try the endocrine therapy for six months and see how my mammogram looks then. Ideally, I'd like to be able to ward off any need for treatment for 10 years, and hope that there may be new treatment options at that point. I'm concerned about having pain and other damage from radiation and surgery to some extent as I'm very active - golfer, aerobics and weight lifting.
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I went that route, now I DCIS showed up again but at high grade. Now I'm questioning my decision.
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I had my lumpectomy n Jan almost a year ago and chose to do nothing else. My Dr is closely monitoring me. I’ve had two Neg MRIs and no other issues. I did lots of research about my treatment choice and feel comfortable with the wait and see approach.
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I had a lumpectomy about year ago also - no radiation or medication. I was confident with my decision until I spoke to the nurse oncologist a half year later. When I sited the studies that show mortality outcomes are the same - no matter what the treatment, she informed me that the studies are only 10 year studies. And that after 10 years, mortality goes up for those who have had lumpectomy only. At any rate, I decided to try low dose tamox - after reading the British studies showing it could be as effective as the regular dose. I had two negative mamograms. I thought I would need them every six months - but nurse said I won't need the next one for a year. How often is your doc monitoring you?
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PandoraX, I can't comment based on personal experience because I had a MX, but the NCCN Treatment Guidelines recommend mammograms once a year after a lumpectomy for DCIS:
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Got it - thanks for the info! I guess the only difference (compared to before) is that I now go to a slicker radiology lab where they give me the results the same day.
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sorry for the really late reply. I rarely get on here anymore. My Surgeon(who did not do the surgery) was a bit concerned because my margins were <1mm. Did an MRI 8 weeks after initial lumpectomy and repeated it again 6 months later. All clear on both. Now another mammo in 6 mon, then back to yearly, I think. I am also on testosterone pellets, and she wants to keep a closer eye on me.
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I did excision only, about a year ago and feel comfortable with my choice. I'm 42, 4 kids, an active, healthy person with career and didn't want to compromise that for something that wasnt actually harming me. Mine was 3mm of grade 2 with necrosis but good margins. I declined the radiation, and tried the tam but the SEs just didn't seem worth it for a med that wasn't a definitive solution. I really appreciate reading the stories of other people who chose the same path, as it wasn't easy and I still second guess at times (like now, with my next scan happening later this week). But I wanted to maintain my good health, and have done so..so far :) Trying to enjoy the now and not let the maybe future get in the way of that.
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