I was diagnosed with a wide span of DCIS, Grade 2. I had a lumpectomy and reconstruction on my right breast and a reduction on my left, clear margins, no invasive detected. My oncologist recommends I do radiation but no hormone therapy. He feels it is not needed and will not change my long-term outcome. I am wondering if anyone else has had this recommendation or has any experience with this.
hello imcloud
As my experience is already old ( dx’d in 2013), I wasn’t going to bother to respond But as no one else has, I wasn’t even offered the option as my drs felt the risk of the blockers far outweighed their benefit for DCIS
Thank you for your response. I am confused because my surgeon told me I would be needing five years of hormone blockers, then my oncologist recommended I not take any. I am curious what others have been told/done. I appreciate your reply.
Your oncologist is the specialist to address medications. Not the breast surgeon.
DCIS stage 2. No chemo but radiation was suggested and hormone treatment after radiation. I opted out of radiation but am currently on letrozole. I’m 61 and in year 2 of Rx
A surgeon, although a doctor, does not specialize in cancer tx. You oncologist is your go to for a cancer treatment plan.
Depends on breast surgeons qualifications.
DCIS 2. No chemo after lumpectomy but radiation recommended and adjuvant systemic treatment (rx). Opted out of radiation but started letrozole per my medical oncologist. I’d already researched and had questions for him. My surgeon is in agreement with me and my medical oncologist. 5 years on letrozole and onc tests me for any recurrence. If I’m good I’m off Rx in 3 more years. Clear margins nothing to report from sentinel nodes excision biopsy.
DCIS lumpectomy, clean margins, clean nodes, stage 0, grade 3 ER+ 15% weak. On Letrozole after trying Anastrozole. Lots of side effects.
Fatty Necrosis in surgical breast, Calcifications now being being watched in the other breast.
Question how can I find out what my reoccurrence rate really is? My surgeon didn't do an oncotype test.
I really would like to get off the Letrozole for a better quality of life. I'm 69 my mom died at 74 and I think about that while struggling to have a life. I miss being an active grammie.
thank you
Flowergal: Did you receive radiation following lumpectomy?
Hi yes I had radiation. Just had a clean MRI next week I have a mammogram and see the surgeon. I am hopeful for a stable result.
:)
Hi. Radiation and hormone therapy was recommended for me. I'm so glad I did the radiation because just after five months on hormone treatment, I had to stop due to extreme side effects, with the okay from my oncologist. In my opinion, I would highly recommend radiation treatment in case hormone treatment doesn't work out. I chose the five day accelerated partial radiation treatment but now wished I chose the whole breast because it was so easy and painless.
@imcloud curious as to what you decided to do in the end Re: hormone blockers? I just finished my treatment for intermediate grade DCIS. 3MM Removed with clear margins. 15 rounds of whole breast radiotherapy. I decided against tamoxifen as the side effects weren't worth it to me and from everything I had read it wasn't a given. My oncologist agreed my gain was very small and possibly not worth it as I'm perimenopausal and have lots of symptoms. Osteopenia,hip pain etc. My surgeon and oncologist both suggested 5mg dose or 'baby tam' but I declined. I was happy to hear your oncologist opinion. I had only 3mm of disease. Sometimes I felt that was forgotten 😬look forward to hearing from you x
Hi, nicvh11. So I did end up trying the hormone blockers. My DCIS had a span of 8.7 cm, which freaked me out that it could grow so fast (even though the doctors said it was slow) from nothing on one mammogram to 8.7 the next. I did a lot of research online and what convinced me was a post that said, it's cancer. Even if it only changes your chance of recurrence by a smidgen, why wouldn't you want to do everything possible to stop it? So I am currently taking Letrozole. At first I had no side effects and was hoping I'd be one of the lucky ones. But as time goes on (it's been 3 months) the side effects have increased. It changes by the day and by the hour. At times I have no pain at all. Other days it's so bad that I swear to never take another pill again. The pain is the worst in my shoulders, but I also get on/off pain in my feet, knees, hips, hands, wrists, and just randomly in my bones at times. I meet with the oncology nurse next week to discuss future treatment. I'll let you know how that goes. I wish we had a crystal ball that could tell us this is what the future will be if you do/don't take these so we could opt out and know it would be okay.
Just my opinion, but a higher grade should have the book thrown at it. I was grade 1, but it was in my lymph nodes so I had chemo, rads and Armidex for 10 years.. DCIS can turn up stage 4 just as well as stage 3. If I were over a grade 1 I'd take hormone blockers. I'd even ask another MO to a second opinion or look up research before I decide.
dcis stage 0 receptor positive
Clean margins 8mm calcifications
Lumpectomy was last week have been told I have to have radiation yes - ok
However tamoxifen name has been thrown about by friends and that scares me as anyone I have met who took it could not stand the side effects -
Helpful input please please
