Opting out of radiation or chemo

Had RS lumpectomy in '97, nodes not involved, maxed out on chemo/radiation at that time. Did SSDI for 1 1/2 yr until couldn't take it due to side effects. 24 yrs later, had RS mastectomy when DCIS found in new lump, nodes not involved. Opted out on AI with concerns of side effects. Found new lump in scar tissue along chest wall with same BC cells as original cancer Jan 2023. After wide excision of chest wall, clean margins but rouge node involved in biopsy. Radiation recommended for 15 rounds plus AI. Truly concerned about re-radiation/radiation. Honestly am uncertain.

Like rene1636, I had a lumpectomy (4/4/23). Low grade, noninvasive, stage 0 DCIS, 7mm with 6mm clear margins, no family history. I’m 65. Not taking hormone blockers. With the Sloan Kettering nomogram, my chances of recurrence are 6% in 5 years and 9% in 10 with lumpectomy alone. Radiation would reduce those already low numbers by 50%. I’m leaning toward saving my one opportunity for radiation in case of an invasive lesion in the same breast in the future. These are all difficult decision, I know.

So happy to find a friend in the same stage of treatment. I hope the burn clears up soon and that the Anastrozole is without side effects.

Hi @katho3 -- In 2013, at 54, I had a double mastectomy since I have the BRCA2 mutation. (We later discovered I also have the CHEK2 mutation.) My cancer was stage 1, medium grade, DCIS, LVI, 7 mm, clear margins, HR/ER+ HER2-. Radiation and chemo were not recommended due to the mastectomy and stage 1. My surgeon told me 1-3% chance of recurrence. Then my oncologist (her partner) told me I had a 99.6% survival rate with a hormone blocker and 99.2% without so he recommended I didn't take it. Ultimately, I only did the surgery.

In 2020, I found a lump in my chest and pectoral muscle. It was now highly aggressive cancer. Removed by surgery, but I had a positive margin. 37 radiation treatments. Now on Kisqali and Letrozole for over 2 years and for as long as they keep working. I'm 64 now, the meds have side effects, but nothing to make me stop taking them.

My original surgeon acted shocked I didn't take a hormone blocker originally and said it would have reduced my risk of recurrence by 50%. I saw her the entire 7 years for follow-ups and she knew I wasn't taking one. CYA

Bottom line - my current oncologist completely disagrees with what I was told back in 2013 both about risk and meds. You may want to consider getting a second opinion for peace of mind. Also remember that you can always stop taking the hormone blocker if you can't tolerate the side effects. I hope this is helpful. Blessings to you!

I had DCIS & had a lumpectomy. I chose not to get radiation because my pathology report had no cancer remaining since it was all removed with the stereotactic biopsy. I also took a Oncotype DCIS genetic test that said I have a 9% chance of reoccurrence without treatment & a 6% chance with treatment. Since it was only a difference of 3% & radiation can only be done once I’m saving that option in case of an invasive breast cancer in the same breast. I’m only 6 months out from the lumpectomy so it’s too soon to tell if I made the right choice. I will be diligent in being screened every 6 months with a mammogram followed by an MRI 6 months later. Have you had a genetic test to tell you what the odds for reoccurrence are with & without treatment? You don’t mention the sub category of what type of breast cancer you have but there are several genetic tests for different types. If you haven’t had one it will help you make an informed decision on your treatment. Ask your Oncologist to order one. Insurance covers most of them. Best of luck on your journey!

I had a lumpectomy 10 years ago for DCIS Stage 0 followed by radiation with no further mediation or treatment. For me, the short-term discomfort of radiation was a far better choice than risking a recurrence of breast cancer. My energy was certainly sapped for a time, but the Comfort Sling was invaluable in protecting my skin from any kind of irritation and/or pain.

Hi
What's is a comfort sling