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Has anyone had prophylactic Brain Radiation to prevent Mets from SCLC?
My husband was scheduled to start 10 radiation treatments to his brain this Monday 2/16/ to keep the SCLC he was treated for with chemo 4 cycles and immunotherapy. After much reading and research on case studies, we have decided to agree to this if he can set up the mapping to avoid the memory canters of my husband’s brain. Hippocampus Avoidance (HA). The radiology oncologist said that whole brain radiation treatment doesn’t prolong life, just keeps cancer from entering brain. So much to learn and know and trouble is you don’t know what your don’t know!
Had anyone here had experience with prophylactic brain radiation and if so, what side effects have you experienced? Brain swelling, headaches, hair loss, nausea, memory loss, hearing and swallowing trouble? Did having the procedure keep the cancer at bay? Did it decrease your Quality of life?
This HA that we requested, he agreed to do but said he would have to get it approved by insurance and different treatment has to be set up and he would call us back.
He is on Tecentriq as his monthly immunotherapy. Keytruda apparently is used for NSCLC; which is known to cross the blood-brain barrier better.
Sorry so long and so many questions piled in one post! My husband looks to me for answers because of my nursing background but never in Oncology, so most of this is foreign to me.
Thanks for any shared experiences.
Donna
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hi @ohiogal8860 - I hope others might be able to weigh in on their experience with radiation to the brain. my dad had lung cancer and in spite of surgery, chemo and radiation - it did metastasize to his brain. (this was in the 80s.) he lost part of his vision in one eye and control of his dominant arm. so both of those things were really difficult for him. I think if he could have prevented that - even if it didn't extend his life, he would have. I'm glad that Hippocampus Avoidance is possible for your husband. that seems like a good treatment compromise between benefits and side effects.
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3 Reactions@ohiogal8860, These decisions are so difficult. I hadn't heard of the HA, that sounds promising.
I'll try to pull in some others that have mentioned similar treatments.
@tvichkon or @mbkcanada, Did you have Prophylactic Cranial Irradiation?
https://connect.mayoclinic.org/comment/1227552/
https://connect.mayoclinic.org/discussion/anyone-have-pci-for-limited-stage-sclc-neuroendocrine/
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1 ReactionI did not have prophylactic cranial radiation instead I choose the wait and see approach. I did get brain mets and at that time recieved gamma knife within the month a was on a trip to Iceland!! I'm still alive and loving life..I get scans every 90 days. I also do immunotherapy every 28 days. I just hit the one year anniversary of immotherapy ( durvalumaub) very happy with my descions.. but a always get atleast a second opinion. I'm stable and and living my dreams. Good luck with your journey
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4 Reactions@tvichkon,
Hi and thank for for sharing your experience. Can I ask, did you have SCLC or something else? How long did it take for the Mets to show up in your brain? Did you have side effects, long or short term from the Gamma Knife?
Yes sclc stage 4
No real side effects. I am 65 years old. Just live everyday the best I can. So for now I'm good!!
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2 ReactionsSorry I didn't read all the way. Maybe about eight months it was a good size tumor 2cm but it was just one.
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1 ReactionIt's been 5 months now since gamma knife. My scans show I'm stable right now
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2 ReactionsI just saw this post in a different group:
https://connect.mayoclinic.org/comment/1507669/
Welcome to Mayo Connect @rmccoy1961, thanks for sharing your husband’s experience. How long ago was he diagnosed?
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1 ReactionHi! He was diagnosed 11/15/25. He is 66.
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