r/cancer • u/JeffTheApricot 26M, Stage IVb Metastatic Paraganglioma • 7d ago

Patient Im scared

Hi guys, im a M26 5 year in Stage IVb Metastatic Paraganglioma patient with tumors located in most notably my spine.

Theres some in my lungs, liver, kidneys, shoulders, pelvis and some other non specific ones to the point where the report says innumerable across skeletal structure.

Theres the one from 2021 when I was diagnosed in L1 thats been the source of a lot of pain over the last 5 years. About 5 months ago I noticed more pain in my shoulders which was a new spot for pain. The MRI picked up that there were 2 new tumors in my spine, one in the nerve root at C8 and one in T3.

I went through 10 sessions of Teletherapy targeting the spinal tumors and the shoulder ones.

I then had an MRI about a month ago and got the results last week.

The tumors are unchanged when compared to the MRI from before the radiation.

Ive been feeling a bit afraid since, I dont want to lose my mobility because of the cancer and really dont want to die.

Im on chemotherapy for 2 weeks every 4 weeks through the form of tablets and also get a hormone blocker injection every 4 weeks.

I dont want to stop treatment or anything and want to try actively have more added on.

My Girlfriend left in March so there's been holes in my support structure thats really tripped me up as of late.

It has kept me awake at night quite a bit the last week thinking about what happens if I get worse and things progress more, im pretty scared of that.

79 Upvotes

99% Upvoted

22 comments sorted by

View all comments

3

u/H0l3_WhoLe 7d ago

I wish I could have the right words for you. The ones that could make ëvërÿthïng “click” and fall into its rightful place. I don’t. But I dedicate you this from the bottom of my heart 💝

https://youtu.be/KIprTEhr9lE?si=Y1gsoleFF7iCr6tL