Diagnosed with DCIS: How do I decide on treatment?

Okay be blessed

I'd like to add my welcome, @magalinebell1958. I moved your message about your recent diagnosis of DCIS to the Breast Cancer Support Group to this exisiting discussion:

- Diagnosed with DCIS: How do I decide on treatment? https://connect.mayoclinic.org/discussion/dcis/

I did this so that you can read previous posts and connect easily with many members along with @auntieoakley.

Have you started writing down questions to ask your doctor as you prepare for your upcoming appointment?

No I haven’t yet not quite sure what to ask

Here are questions that Mayo Clinic lists on their article about DCIS https://www.mayoclinic.org/diseases-conditions/dcis/diagnosis-treatment/drc-20371895

Below are some basic questions to ask your doctor about DCIS:
- What tests do I need to determine the type and stage of cancer?
- What treatment approach do you recommend?
- What are the possible side effects or complications of this treatment?
- In general, how effective is this treatment in women with a similar diagnosis?
- Am I a candidate for tamoxifen?
- Am I at risk of this condition recurring?
- Am I at risk of developing invasive breast cancer?
- How will you treat DCIS if it does return?
- How often will I need follow-up visits after I finish treatment?
- What lifestyle changes can help reduce my risk of a DCIS recurrence?
- Do I need a second opinion?
- Should I see a genetic counselor?

I think the questions above are excellent and a good place to start. I had a DCIS diagnosis in July 2022 on a screening mammogram. I have no family history either. My area was 4 x 6 mm, so very small, but after meeting with breast clinic MD and surgeon at Mayo Clinic in Rochester, MN I elected to have a lumpectomy and also did 5 radiation treatments. I healed from surgery well, but still have some discomfort in the area that may take time to dissipate. There was no residual DCIS during my surgery. The biopsy likely removed all of it as it was small. I am now on Aromasin (aromatase inhibitor) to decrease estrogen production as my cells were estrogen positive. I am not sure I will stay on this med as it has some side effects that are challenging, but I'm hanging in there for now. DCIS is a tough diagnosis in my opinion, as providers are kind of all over in terms of treating and managing the diagnosis. Stage 0, pre-cancer are words you will hear--but then, lumpectomy, radiation, and meds are also words you will hear. If it isn't really a "cancer" why all the fuss was the question in my mind? Providers once again are still trying to come together around this diagnosis and proper treatment, without over treatment. I went ahead and did all that was recommended at the time and have no regrets, but your decision might be different based on your cells, size etc. Best wishes in managing this new health challenge....

Good morning,
I was just diagnosed with DCIS stage 0. Options Lumpectomy with 4 weeks radiation/meds, I am ER + (with 7% recurrence at 10 yrs) or a mastectomy with (2% lifetime recurrence.) I am concerned about the side effects of the radiation and meds so am leaning toward mastectomy with the better %. I am 53. What are your thoughts on doing a mastectomy on both sides, my right breast is fine but I am concerned of course with it eventually finding this side. Has anyone made this decision? What was your recovery time with the mastectomy and side effects?
Thanks for sharing,
Lisa

@lmcintosh , I had my non-cancer breast removed as well and as it turned out it was full of cysts and also undiscovered atypical dysplasia. We have a legal/insurance right to symmetry. I did one at a time because I have lupus and my docs wanted to see how I did with one before doing the other, but many women do both at once. I went "flat" with no reconstruction. The surgeries were not bad at all. (I had a paracervical block which meant I did not need pain meds at first.)

@windyshores Thank you for your response. I am also going flat and I am encouraged by the surgeries not being bad. How long was your recovery? After the block wore off how long did you have to take pain meds? I just don't know enough about all of this to feel like I am making educated decisions. My Dr. said, there was no reason to take my good boob off at this time but then I feel like It's just a waiting game.

Hi all, has anyone taken a chemo pill called Palbociclib capsules, any severe side effects?
I was on verizeno and could not tolerate the drug. many side effects, which gave me
two blood clots in my lungs. I now have to be on a blood thinner so I won't get more clots.
I have MBC 4,

DOUBLE MASTECTOMY. I had DCIS stage 0 in 2012, lumpectomy and radiation. In 2021 again on the same breast. This time mastectomy was indicated and I decided for double. When the pathology came I had and invasive cancer that was never seen in the same breast. So I received 16 chemotherapies. In 2012 I wanted a double mastectomy and I was not allowed because I was so "young", 38. I wish I had done it. Today I am 10 months post chemotherapy. I feel fine but always comes to my mind... what if???? Of course is your decision, but this is my story. Stay strong 🙏