Diagnosed with DCIS: How do I decide on treatment?

Hello all. I just had a partial mastectomy three weeks ago for stage 0 DCIS. I've been to the oncologist (yesterday) and have an appointment with the radiologist mid September. I've been researching the two treatments that are available and I'm leaning towards no treatment. I'm 72 years old and it seems like both treatments are fairly extreme and I'm wondering if my quality of life is more important than taking either of these treatments. I would love feedback as I feel like I really have no one to help me make this decision.

Welcome @finallyretired. Being freshly diagnosed with DCIS is likely not the retirement gift you were hoping for.

You'll notice that I moved your question about deciding on treatment after a partial mastectomy to this existing discussion:
- Diagnosed with DCIS: How do I decide on treatment? https://connect.mayoclinic.org/discussion/dcis/

I did this so you can read previous posts about DCIS and treatment decision making as well as connect with other members like @tctredwell1 and @sakina who were also recently diagnosed and those who have journeyed before you like @sequoia @kathyomaha55 @jennie23b @collielady and many others.

I can certainly understand the choice to not have further treatment after surgery. It's a personal choice. Did your cancer team perform the Oncotype DX test on a tissue sample that may help with your decision about chemo's effectiveness for you?

The Oncotype DX Breast Recurrence Score® test has been developed for patients with early-stage HR+, HER2- breast cancer to:
– Precisely identify those patients who will and will not benefit from adjuvant chemotherapy
– Determine the magnitude of chemotherapy benefit
– Provide an individual’s risk of distant recurrence

About the Oncotype DX Breast DCIS Score test https://www.oncotypeiq.com/en-US/breast-cancer/patients-and-caregivers/stage-0-dcis/about-the-test

As you can see, you are definitely not alone. Welcome.

If you can still have the OncotypeDX genomic test done, you can have an idea of your risk of recurrence. And, if it's very low, it makes decisions easier as a low score also suggests against chemo. I had the test done nearly 3 weeks after a lumpectomy so the time lag wasn't an issue.
(And the resulting low score was helpful.)

I was offered local site-specific precision radiation that was every other day for a total of 5 sessions. I think it's considered very low risk but is specifically to "clean up" the area around the tumor site and offered only that local protection in case some rogue cells remained. I didn't have it but think it's not a bad idea. And if the tumor (caught at stage 1A) were larger or the sentinel node biopsy detected cancer cells, I likely would have had it. But I hope you get enough information to look at the options and don't rule out anything just because of age either. Just look at the big picture and which decisions would 'wear well' meaning least likely to cause second-guessing later.

I have questions about adding chemo to treatment in addition to letrozole after a single mastectomy on 8/11 (dcis stage 1 grade 1) and an Oncotype score of 28 which falls into the intermediate range. As a 75 year old, I feel like I need to assess the side effects of chemo against the benefit of stopping a recurrence of 17% over 9 years. I am also unsure of what additional testing might be done over time.

Thank you for all this very helpful information. 🙏🏻

Hello all. Thank you so much for all your comments. I appreciate your comments as this is a very daunting task researching a health problem that I have no experience in, thank god for that. According to my surgeon she said that I would not need to do anything further since the DCIS was so small and at the very beginning stage. That is why she diagnosed it as stage 0. She sent me to an oncologist and she said no adjuvant. Then she says that the options, which I thought there were no options due to what my surgeon said and what my oncologist as "no adjuvant". The oncologist said there were options for prevention which are the pill or radiation. I'm so confused about what if anything I need to do at this point. I just moved and have an appointment with a new primary doctor mid September so I can't even ask her what her thoughts are. I really don't want to and I'm very worried about putting such drastic meds in my body at this stage in my life. I'm pretty healthy and the side effects scare me. I would appreciate any comments or thoughts now that I've explained a bit more about my situation. I would love to connect with anyone that has been in the same boat as I'm in and what they decided what path they chose to take.

Thank you. It's great news that I'm not alone because at this time I definitely feel like I am.

When you say 'Oncotype score', do you mean the OncotypeDX "risk of recurrence' number, which shows up on your report as a %?

If so, where does the 17% come from as recurrence risk? I only ask as I've seen people misunderstand the numbers on the OncotypeDX report.

Also, remember that the 'risk of recurrence within 9 years' that is on the report is contingent upon taking either aromatase inhibitors or tamoxifen. The risk nearly doubles if one doesn't take them, using the current statistical models.

It's worth asking your oncologist whether chemo makes much difference in his or her opinion. And maybe get a second opinion. I can tell you that my breast cancer surgeon and oncologist told me that older women 'usually' skip chemo and radiation when the cancer was caught early, is a low stage and if the lymph nodes are clear. You are taking the letrazole which will likely give you the most protection. And the tumor was an early stage. And, as a grade 1, not considered fast-growing.

Maybe another talk with your, or another, oncologist will give better perspective. Quality of life is important too.

I had a lumpectomy July, small tumor grade one Stage one. Invasive Ductal carcinoma.had oncotype score of 4 no chemo no radiation my choice because other problems that I have. The Dr. Wanted me to take Tamoxifen daily for five years. I will be 72 years old in couple of weeks. I’m not going to do anything for now. I pray I did the right thing.