My posts are usually very long (sometimes too long) and detailed. This time I’m looking for you to share your experience.
Does anybody have spine mets, particularly thoracic?
Did you had to have a surgery to remove them?
Did you radiate them and what was result? Any side effects?
Any systemic treatment that was effective for spinal mets?
I have to make some difficult decisions and your help would be greatly appreciated.
Thank you,
Polina
Sandra, thank you so much for your prompt and very helpful as always response.
I already had radiation in July 2020. Didn’t seem that effective, resulted in radiation pneumonitis and possibly caused spinal cord edema (this one is not definitive given late onset). Ended up with the surgery to alleviate spinal cord progression from the exposed T4 met. Pathology indicated active tumor Now there is a talk about more radiation and/ or changing systemic therapy.
My quality of life went down significantly, from being very active to having difficulty walking with a walker.
My PET scan is on Thursday. I’m reluctant to do radiation or change the therapy unless PET scan will show new findings.
Sorry, I end up talking too much 😊
Thank you Sandra!
Spine mets to T11-L2 in 2017. Surgery to remove vertebrae, plate and screws put in place to hold. Pain free for the first time in 2 years. I had radiation on my hip and spine. I did really well and continue to do so. I did however had to relearn how to walk but that was also associated with the fact that I had to have gamma knife on my head that compromised my fine motor skills and coordination.
Thank you so much for sharing your experience. I had similar surgery at T6-T8, but hesitant to have radiation again.
How long it took you re-learn how to walk and are you walking now with or without any devices?
I had surgery in late October 2017 and I was walking with a walker when I left the hospital 2 weeks later. I had radiation in late November 2017. My gamma knife was 11/30/17 and it likely knocked me for a loop moreso than anything else. My gamma knife was in the middle of my cerebellum. I was unable to write my name, which was very frustrating. I went to work in early January (after Christmas break, I am a teacher) with a cane. I have been unassisted with a device since early February 2018. The biggest concern Drs had was that I could still be a fall risk. I had to wear a "Storm trooper" back brace that covered my entire torso. The only time I could remove it was for sleep! Looking back it was not as bad as it sounds. The vertebrae they removed in my back was the consistency of butter according to the dr so I had extensive back surgery.
I have thoracic spine and lower spine mets as well. I did receive palliative radiation for pain. I also have mets in the hips and pelvis. It can take several months before you have some relief of pain.I am glad l had the radiation - l still have terrible pain sometimes (l also have severe arthritis which complicates things). I can walk, the pain is not debilitating as it was when l had the radiation. Radiation at this point is not curative. Ask the radiation doc about side effects about what the expected benefit and risks are. Let us know about your decision and how you are.
Thank you so much for sharing your experience. I did have radiation at this area in July 2020. It helped with pain, but I had multiple severe side effects. So I’m hesitant to have it again in exactly the same area. My radiation oncologist says that without radiation the met will develop again. Perhaps if this happen, Then there will be time for radiation.
Will need to think about it a bit more.
I have not heard of or read any evidence that radiation can prevent a new met - l don't think this doc is being honest with you. Please let me know if you get any more information especially if he can back up what he is saying. My radiation oncologist was very clear that the only role for radiation to bones in metastatic breast cancer is palliative. Also l am well read and a retired nurse practitioner and not aware of this. Thank you for staying in touch. ❤🌺❤
Thanks Sandra. I appreciate you and your support. You have heard it before but l can't not say it: you are not now or ever were 'just a nurse', you know who you are, what a blessing you are and how blessed you've been being a nurse.I have digestive issues from the radiation too.
Dear Polina. I will pray for you and on Sunday, I will send a written note for prayers to be said on your behalf.. The prayer group will pray for you for at least the next month. This is unless you object. I admire you and feel for you In this very tough place. With your understanding of the situation, you will make the right decision for yourself.XXX OOO
Amen🙏😇
Thank you!
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