Worsening back pain after treatment?

[Jpburns]

I’ve had back pain before, and even had surgery to relieve it, but this is different. I’ve brought this up with my RO and my plain oncologist, but wanted to see if anyone here has experienced this. Next week I’ll be talking to my GP.

A reminder of my DX: Gleason 9, spread to local lymph nodes. Treated with 28 fractions of EBRT, finished mid-April.

Strangely, during my radiation treatment, despite having bouts of “back” pain leading up to it, I experienced no back pain during treatment, until the final week. Since then it’s been getting worse, waking me up at night and making it difficult to find a comfortable position sitting or lounging.

An additional data point; I’ve been taking Orgovyx since December, and have just stated taking Abiraterone a week ago.

I’d describe it as a burning feeling, sometimes centered on my left hip. Sometimes it feels like my kidneys. No visible blood in my urine or stool. No pain urinating. Urinating a lot since treatment and since starting Abiraterone.

Not really looking for medical diagnosis so much as wanting to know: has anyone else experienced this? It could just be back problems on top of this other nonsense, but as I say about it in my comic, “it just feels different.”

Thanks.

[SViking]

I’m on enzalutamide monotherapy and I’m experiencing your same symptoms. Even though I train hard and have a clean diet the brain fog this time around is really bad. And the lower back pain does move around between hips, kidney, and either side of my spine. And I sailed through a couple of years of Lupron and Orgovyx with barely a ripple.

[JohnInTheMiddle in reply to SViking]

I have the feeling my experience may not be relevant, but I'll share it anyway. Back pain and severe leg pain and rib cage pain was how my Stage IV metastatic PCa was diagnosed in the first place. Pain was caused by cancerous masses pressing on my spinal cord and on the nerves that exit the spinal column - which created back pain and other odd pains related to wherever the nerves went. (I had no other symptoms and these symptoms grew from a dull backache to what I had described above over the period of 6 months or more.)

After diagnosis, very rapid response from Firmagon ADT and pain diminished very quickly. 4 months later stop the hydromorphone. And like you now on Abiraterone and ADT. (Both injected Firmagon and the new oral Orgovyx are androgen antagonists, about which I have written and which I prefer.) FYI I also had Docetaxel chemo and it was no problem. I noticed you haven't had chemo. Anyway that's my story in case it's of any interest.

[Jpburns in reply to JohnInTheMiddle]

That’s useful data.

My diagnosis started when I had “unusual” back pain (different that earlier back problems). But I couldn’t get any doctors to connect it with my cancer (nothing showed up on scans or PSMA/PET scans). Maybe my disintegrating spine just decided to get worse right after RT? I hope not, because I have enough on my plate right now.

[JohnInTheMiddle in reply to Jpburns]

I have three vertebrae that are seriously compromised because of metastases. I understanding is these metastases are asleep for now. I'm always at risk of breaking my back. And exercise is important but one has to be careful.

[Rbtflr in reply to JohnInTheMiddle]

I had similar severe back pain and thought it was a kidney stone. ER did CT and all negative. I was sent home. Pain became even worse and wouldn't stop so I went to Urgent Care at my cancer center. They did an MRI and found similar to what you had. Metastasis was pushing on spinal cord. Had to do spot radiation treatment and it has taken care of the pain.

[j-o-h-n]

Nothing worse than pain in the middle of the night when the rest of the family is restfully sleeping.... Stupid TV helps me.........

Good Luck, Good Health and Good Humor.

j-o-h-n

[Jpburns]

Just to update stuff. I reached out to my oncologist and my neurologist (so many specialists!) and both have ordered tests for me. Lumbar MRI and X-rays from the neurologist and a… PET scan (maybe PSMA/PET)?

Checking on which, since my recent RT and continuing ADT may skew any PSMA test. Is that right?

[God_Loves_Me in reply to Jpburns]

I had similar kind back pain when I started xtandi. Have you try Aleve ? I spent so much time in reporting and no body able to roll out.