Stage 4 NHL in remission. Palliative care concerns you should talk with your doctor about.

bobinashoe

Everybody is different in their diagnosis and treatment. My NHL spread to my spine, where I had a spinal fusion from a significant burst fracture in 2019. I was diagnosed stage 4 NHL February 2023. The oncologist sent palliative care. This was great while receiving treatment. But, after remission, palliative care discharged me with a referral to pain management. I voiced these concerns with my oncologist/hematologist, and palliative care, I was still discharged from their care. I was on huge doses of narcotic pain medication for over a year, I was on super low doses for years prior to cancer. This made it where the low doses allowed by law/policy ineffective. The pain management doctor made this immediately clear. It was not a matter if he wanted to treat or not, his hands were tied. He offered trying other options, but expressed concerns about the safety, and efficacy of these options. I asked him what he would do, and he said to find a doctor who specializes in cases or live with it. I didn't know this when I walked out of his office, but i only had one option. I was forced to live with the pain, and every day I wonder if getting palliative care was worth it. I know if i did not survive, that boost would mean more quality time with my family. But I did survive, and it has severely affected my outcome. I am a shell of the man I was 2 years ago. My quality of life was better when I wasn't i still had cancer. I had access to medication that greatly improved my quality of life, and physical abilities. Please consider what your expected outcome is before you make any decisions that could affect your long term success. I am most likely permanently disabled because of this.

I post this, because I wish all the time that someone offered this information to me, and I would love it if somebody could offer advice. 😁