To Radiate or Not to Radiate

Posted by billiemoore @billiemoore, 20 hours ago

I had both invasive (stage 2) and DCIS with 1 node involvement. I have been on Temoxifen for awhile and plan to continue. Had SMX with clear margins-direct to implant.

I’m considering forgoing radiation to breast; only lymph nodes or radiation all together, here is why..
-10% of lymphedema and risk to active life impaired. Already had issue after 6 nodes removed..5 good 1 bad
-do not want to wreck the very tough surgery I just had when I have no sign of cancer and put myself in a position for yet another surgery. One reason I did SMX was bc they said reconstruction would be easier and radiation destroys skin, tissue, nipple, etc
-left side and don’t want to impact heart/lungs
-Onco has 1% risk of distant reoccurrence and overall score of 5
-I have had my lymph nodes (immune system) save me from infections and such over the years more than a few times

So hard to find a balance with reducing risk of reoccurrence, risk of side effects and mental health repercussions.

All radiation oncologists will say—you are healthy, do it all but I don’t want to become unhealthy either if not that effective.

I’m thinking the 2 high risk areas for lymph nodes and that is it. Radiation oncologist wanted me to do it all. Would be doing 3 weeks and opt out of ‘boost’

Anyone forgo radiation in a similar situation?

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Miriam, Volunteer Mentor | @mir123 | 19 hours ago

I didn't forgo radiation 2 1/2 years ago, but I went for a modified treatment. I had an intelligent radiation oncologist, who was good at both listening and giving information. He said that in the UK and Canada shorter courses are the standard (I have nothing to back this up, just his statement.) I went for 3 weeks and no boost instead of a total of 6 weeks. The tumor board disagreed, but the oncologist was fine with this. I have only one functional lung, and radiation was on the other side, potentially causing a lot of pulmonary impairment. It went very smoothly--no burning or skin problems. My white blood cell count did go down, and I had some mild fatigue. I didn't really notice it until I improved a few months later and had more energy!
My choice was partially based on the fact that the surgeon did not remove cancerous lymph node in a difficult to reach area. Surgery was suggested for that, but the location had a high risk of bleeding. Radiation was more than 50% effective for that node. So far good. 3 years 4 months out from diagnosis. I hope this helps your thinking. Each person is obviously different, but I think there can be success with variety of approaches. All best to you!

pml | @pml | 12 hours ago

Hi,
It sounds like you have researched your situation well regarding the radiation. I think you would be smart to leave things as they are whether the doctor agrees or not. After all, it's your body and your money!

My husband had lung cancer and after he almost died from Keytruda infusions, he refused any and all treatments in the future. He lived 14 years with lung cancer before he died at age 83 in 2024.

I will say a prayer for you.
PML