Anyone out there with any experience or former treatment for a metastatic epidural tumor?

[Fight2016]

Diagnosed Stage 4 breast cancer in 2016. Fast forward to August and I developed sciatic type pain. After anti inflammatories and muscle relaxers failed I started a brief steroid taper which helped initially but the pain came back as the taper continued. MRI shows mass by L3. Got radiation and initially felt all pain resolved for about 2 months. Everything has come back again and I’m back on steroids with MRI showing mass is getting bigger. Went to see a neurosurgeon who said he isn’t sure he could preserve the nerve with surgery and there may be more risks than benefits so he is going to present my case with his colleagues and come up with a plan. Has anyone experienced this? What did you have to do/have done?

[Jhshl512]

hi

I would suggest a second opinion from a top notch neurosurgeon. In 2013 I had a tumor removed from my spine and they then inserted rods and screws to hold my spine together. Fast forward to 2023, I had another case of horrible back pain that caused pressure on my spinal cord. More surgery and more rods and screws. He didn’t remove any tumors this time. Too many to count but radiation took care of the rest of the pain. It will be 2 years in March and I’m still pain free.

I now have been told it has spread to my liver! Another mountain to climb but willing to do so.

You don’t say where you’re from but do your research. I’m from Rhode Island and had the best neurosurgeon in the world. (I was told that many times) I thank God for him! He still sees me every 3 months even though I’m fine.

Best

Lori🙏🏻

[Fight2016 in reply to Jhshl512]

Thank you so much for your reply! I am from Illinois. I will look into some second opinions. Nervous because I know something has to happen soon!

[monkeygirl62]

Mine isn't epidural but I had a large tumor under my left arm pit of 6.3 cm and it compressed my nerve and wrapped around my main artery in the arm. Nevertheless, I live with pain constantly, it's like neuropathy. The tumor, (on PET scan), according to the radiation oncologist, is dead, it's just scar tissue, (though it's still half it's original size) and nothing more can be done as far as radiation - so no pain relief there. So my oncologist took it before a vascular surgeon team and they said that doing angioplastic surgery to relieve pressure of the nerve and main artery (dead tumor) won't hold, that it would blow out and that's not a good thing. So I am back to square one and no permanent pain relief in sight. I am grateful for my palliative care team that manages my pain. My pain level is a 5 and that's with pain management meds, without the meds it's a 10. So I am very grateful for my palliative care team that helps me to have some what of quality of life. I can barely use my left hand and arm but I am doing PT myself at home to regain back some fine motor skills. Hugs 🤗 and prayers 🙏.

[jersey-jazz in reply to monkeygirl62]

Dear Monkey Girl------I am truly sorry for you with all that pain. I just hope that some smart dr can figure some way to rid you of all that suffering. Surely there is an answer for you. I am somewhat lucky in that, thankfully, I have experienced severe inordinate pain that has been relieved in the hospital . I understand and send loving thoughts to you.

[monkeygirl62 in reply to jersey-jazz]

Thank you for your kind thoughts and words. I'm learning to live with it. Perhaps in the future there will be a solution. Just like new drugs for cancer, new solutions for pain. I'm looking forward to the future that's for sure. Hugs 🤗 and prayers 🙏.