Diagnosed with DCIS: How do I decide on treatment?

Good morning,
I’m sorry you are going through this. I personally know the feeling.
I was diagnosed with IDC in one breast June 2022. Small tumor, clean lymph nodes.I chose a bilateral mastectomy with reconstruction. I have done so much research and reoccurrence seems to occur with lumpectomy with radiation.
My surgery was 9/13/22 and I have no regrets. My tumor was 95% estrogen and 5%progesterone fed. My oncodx score was 6% reoccurrence in 10 yrs.
I chose not to do AI. There’s too many side effects and don’t want to take on more issues. It is a personal decision and it’s completely up to you and you alone. Don’t feel pressured.
Surgery was painful but you will be surprised on how fast your body heals and recovers.
Let me know if you have any questions. We need to support each other in our journey!
Best of luck!!!

I have been diagnosed with invasive DCIS 0
The surgeon recommended a lumpectomy with breast reduction/ argumentation
I was all prepped in a bilateral mastectomy
I am 66 but not on the bio identical hormone protocol anymore.
Will I need the estrogen antagonist
Will I still need radiation if I get a mastectomy?
I don’t want anything to come back either
Very difficult decision mis a reduction and lumpectomy the same as a partial mastectomy ?
So many questions…
Ty

Thank you for sharing. I have heard so many what ifs...? I am leaning toward the double mastectomy at this point. Any complications with it and how was your recovery?
Lisa

@millard this thread is for DCIS, sometimes referred to as stage 0 or a "precancer." I am sorry you have stage 4 and are dealing with these meds. I hope you can find a thread for MBS and probably a moderator will help you find one. You can also post on breastcancer.org. Good luck with your medications!

@lmcintosh For me, there was a good reason to take the other breast off. I am just more comfortable with both gone than with one, and as I wrote, we are entitled to symmetry. I also had sensations in my other breast that turned out to be cysts and there was some atypical hyperplasia, so concern about cancer in the other breast can also be a reason.

The block wore off in a few days. I only took half a tylenol/codeine once a day around 4 pm despite the advice to "stay ahead of the pain." I did fine. Recovery was 6 weeks in the sense of not driving and not lifting more than 7 pounds, but I was fully functional much sooner than that.

I had no choice on the first mastectomy. My cancner was grade 3 with lymphovascular invasion. I also did not want radiation and my docs didn't want that for me either. You truly have a choice. Which is hard!

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 🙏

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,

@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.

@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.)

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