DCIS Grade 3, why did you choose radiation or mastectomy?
All:
I am new here, and am having a very hard time deciding what treatment I want to do for my DCIS, Grade 3. My malignancy was 8 mm, margins were clear, cells ER/PR+. They also removed a small fibroadenoma. I met with two plastic surgeons yesterday and am more confused than ever about what to do. I have a DNA mismatch repair mutation, which I have been told is not associated with my DCIS (the cells were negative for microsatellite instability ((MSI)). I feel like radiation is so scary, and comes with the potential for latent toxicity and that scares the crap out of me.
I am considering:
1. Standard of care: RADs and 5 years of AI
2. Double mastectomy without reconstruction (going flat)
3. Double mastectomy with reconstruction
My decision to do mastectomy would not be because I think it has a better prognosis. I have read that it is about the same survival long term as RADs with similar recurrence (though I assume harder to treat recurrence if the Ca comes back in the chest wall). I am very freaked by the idea of radiation and the long list of potential side effects and latent disease that may come of doing radiation.
Can you explain why you chose the treatment path you chose? Any regrets? Are you at peace with your decision?
Comments
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I am totally at peace. Rads (either time) was not a big deal for me. Just as a lot of people think chemo still makes you nauseated/emaciated/. . ., I think a lot of the fear around rads is based on outdated information. The equipment these days is so impressive. FWIW, I also never considered getting any kind of reconstruction/lifting/. . . of the breast that was losing a chunk (and yours is really small). I've heard horror stories of issues with implants and such, including two friends who almost died from infections. I figure we're all lopsided anyway--what does it matter? This is a very individual decision, and yes--most important is to be at peace with whatever you decide and not look back.
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As you can see from my signature, our situations are different, but I wanted to respond. Because my DCIS was ER-/PR-, and because my MRI indicated possible spread to my lymph nodes, my breast surgeon (and 2nd opinion surgeon) both recommended Mastectomy, noting that being hormone receptor negative meant we had fewer tools to fight with. I chose to go forward with bilateral because I am such a worrier and wanted to ensure I had done everything I could do at one time. Fortunately for me, the lymph node reactivity was caused by the trauma from biopsy (as my surgeon suspected), and there was no invasive cancer found. Unfortunately, the margin was close on the anterior side (close to the skin) and I chose additional surgery to remove more skin to address that.
I've had no issues from reconstruction, although the re-excision scar has given me some issues, which you will not have because they got good margins already. I do not regret my choice at all, but I encourage you to research your options thoroughly and get a second opinion if you think that would be helpful. Please also do some reading on this site to see what issues may arise from mastectomy and reconstruction, as well as from radiation.
Ingerp is absolutely correct that being at peace with your decision is very, very important. This is all hard enough without second-guessing yourself! I find comfort in knowing that I did what experts suggested and followed the standard of care (I think), but others might not find that as comforting if complications arise Most of all, I wish you the best!
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I am 2 months post Lumpectomy. I Do an MRI tomorrow to be sure nothing was missed, then I’m taking my chances and not doing any treatment. My DCIS was only 9 mm, and intermediate grade wo necrosis, so not quite in the same situation as you. I’ve been doing lots of reading and researching studies and I’m comfortable with just watching it closely.
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mccoll, have you seen this discussion thread?
Topic: lumpectomy vs mastectomy - why did you choose your route?
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I had high grade DCIS w necrosis. I had bilateral mastectomies and didn't need anything else. I knew right away that I was leaning towards bilateral mastectomy even though data shows I could've just had a lumpectomy because:
1) Family hx- my mom had DCIS last year (she was 72 and I'm 44) and dads sister had triple neg breast cancer. My genetics testing was negative, but we don't know all the mutations, especially in minorities
2) Age and having Dense breasts- I knew if I only had a lumpectomy or a unilateral mastectomy, I potentially would face a long road of inconclusive mammograms needing further testing, biopsies... bc of having dense breasts. And I know I'm not great at getting everything done in a timely manner and I didn't want to deal with hassle, stress, anxiety of waiting for results, that come with all that.
3) I wasn't that attached to my breasts. They did their job nursing 4 babies and I'm pretty flat so it wasn't a big loss. Though I did mourn the loss of my nipples. Not something I could just share with people! But in this forum, I feel like I can say it. Now that I'm 2 months post op, I don't really miss them per se and doing reconstruction with implants does help with the psychological factor of having lost something. The expanders are annoying but it is nice to look forward to a positive outcome.
4) Didn't want to have to deal with potentially positive margins and having to go back to OR again (and my DCIS was larger than expected- they thought 2 cm, but it was 3.5 cm). And I kind of thought surgery--though a larger surgery-- was an overall simpler option than radiation (with potentially unpredictable side effects as you mention)
I think even without the family history, I might have chosen the same thing with even just factors 2-4.
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I tried to do the lumpectomy + rads route but couldn't get clear margins in 2 tries, so a mastectomy was necessary. Reconstruction is a whole other kettle of fish. If I'd know that I'd have complications and so many surgeries, I might have stayed flat and gone topless at the beach. Mastectomy has a simiilar survival rate but a lower recurrence rate than lump+rads.
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I had intermediate grade DCIS - 5mm. A second biopsy came back with a diagnosis of LCIS. I opted for bilateral mastectomy due to the LCIS along with strong family history. My mother was diagnosed at 48 - had a lumpectomy & rads, with a second occurrence at 50 resulting in a unilateral MX. She's now 75 and so healthy! My paternal aunt also was diagnosed in her 50's. Gene testing showed no known mutations.
I got two opinions and both recommended BMX, although both surgeons said that they would do lumpectomy + rads + tamoxifen if that was my choice.
It is such a personal decision. I knew that I would have a very hard time with the surveillance required and the accompanying anxiety. I wanted to do everything I could to avoid recurrence and wasn't thrilled with the idea of rads/tamoxifen. I have no regrets regarding my decision. I was able to have nipple sparing MX and reconstruction. For me, the reconstruction has been the harder part of it.
I wish you the best.
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I never looked back on my decision. I had DCIS all over my right breast & it was a matter of time for the left to be the same. Thankfully I have a outstanding surgeon who said there was not doubt I needed a mastectomy. We talked at great length and when you surgeon says if she was in the same situation this is what she would do I felt at ease. I have great respect and trust her.
I received a total Bilateral Mastectomy on April 9th. she did a really good job. I am still healing, very sore and excited to start a exercise program soon. I met with the Cancer doctor and told I am a Stage 0. Still pending if I need radiation. I will do what is best.
I had family & friends ask me lots of questions on my decision. Would I do it again and the answer is yes. I am happy with being flat for the rest of my life & if I want to wear prosthetic I can. I say to everyone I am alive, blessed and want to inspire everyone no matter what comes in our lives.
I wish you and everyone on this board the very best of health and many, many hugs.
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Just want to say I loved your reply!!! Sounds like you were quite thoughtful in your decision and you seem grounded and happy!
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UPDATE: I opted for DMX with flat closure. Surgeon did a great job and I have zero regrets. Mastectomy pathology found more DCIS, so I feel very justified over the nuclear option. I wanted to avoid looking over my shoulder for the rest of my life and stressing about screening (still a tiny risk, but it’s tinier than the other risk factors added together (reconstruction/radiation/AI)). In the 35 days since my surgery (about as many days I would have had radiation), I feel good, have great range of motion (not perfect but I’m almost there), and I don’t have to do AI therapy. With this diagnosis and my genetic mutation I feel like this was the right path for me. I’m trusting my body to heal and not assault it with stuff that could do more damage down the road, but was aggressive enough that I hope my risk will be super low.
Best of luck to everyone finding their best path forward. Thanks for your input and support!
Michelle0 -
You make two good news posts today! Great you're doing so well and feeling good about your decisions! Thanks for keeping us posted!
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Aug 8, 2021 11:36AM
From: Monique
Dear New Friends:
I have 2 masses in my left breast that are DCIS, I am scheduled to have a mastectomy on my left with expanders for reconstruction on my left breast on September 2nd. Would truly like to learn about others in situation.
In addition, helpful to know the chances of my final pathology report coming back as ER- and PR- and having to undergo chemotherapy. Chemo scares the living daylights out of me.
I would truly appreciate anyone's perspective. If you have done any research on this topic, please feel free pointing me to your sources, if you are comfortable in doing doThank you in advance for any insight, perspective, support, or resources/reference materials.
Sincerely,Monique M
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DCIS in 2017. I opted for BMX with direct implant reconstruction. Said no to radiation, as my left breast was the diseased breast, thus it being closest to the heart. Have zero regrets about my BMX with direct reconstruction.
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I just had a single r mastectomy it was er/pr neg grade 3 so I didn’t want to worry about it coming back. my margins and node were negative. I’ll be two weeks out on Fri. It struck a chord with me that you mourned your nipples. Honestly I’m not big either and kept wondering if the surgeon could just save it and stick it up higher and call it a button. Tattoos looked like bullseyes and I finally realized since I was keeping one breast the nipple to match the other dropping side align with a rib. My husband said he was fine with a Picasso look if it was important to m but in reality it couldn’t be saved. I appreciate you mentioning this. I’m okay with it so far. I’m glad no radiation. No more treatment for me very blessed
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