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Anyone forego radiation? Research, personal experience, outcomes
Breast Cancer | Last Active: 6 days ago | Replies (33)Comment receiving replies
I understand the tough decision. I was low risk of recurrence and declined the AI's, but opted for the 5 targeted radiation session option. New studies show it is very effective with lobular cancer, apparently even more so than ductile. I used mepitel film, (cancer was in left breast), had no skin reactions and about 9 months out now no lymphodema or problems at all. Trust your gut, make your decision and then move on. Obviously your concerns are very valid. I have not seen a stat, but I'm sure they exist, as to the percentage of women who get lymphodema after radiation, and that is a number I would personally weigh into my decision. Also, is radiation what causes it, or is it actually the surgery itself? I am not confident not having radiation means you won't get lymphodema. My Dr. implied the risk came from the node removal surgery. Either way, I wish you all the best and now I am going to go pull stats!
Replies to "I understand the tough decision. I was low risk of recurrence and declined the AI's, but..."
@wyowyld
thank you so much! I appreciate your input. I’m going to ask about possibility of doing targeted therapy only. they said it would be 3 weeks of whole breast and then 1 week of targeted
@wyowyld Thanks for your detail - I am scheduled for the 5 targeted sessions in a week and am having my doubts. I'm inclined to do it as I gain 9% increase in "cure" to get to 99%. I am very low risk etc... but it is not something I can do in 6 months etc. It is very stressful. My radiologist is on vaca but going to talk to Onc - surgeon and Onc did not think I needed radiation... Is radiologist just "up selling" services???? Plus they are talking about Tamoxifen for 5 years - worried about side effects also but Onc said if I am bothered she could consider taking me off them. So maybe radiation is the way to go, 5 and done, then reduce or stop Tamoxifen in future..
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OK, did the research and both add to risk, which you may have already known, but the higher risk comes from surgery.
"While both node removal surgery and radiation increase the risk of lymphedema, surgery is generally the primary driver, with the risk increasing with the number of lymph nodes removed. Radiation adds to the risk by potentially damaging lymphatic vessels and causing fibrosis, especially when combined with extensive surgery.