For over 2 years my scans show no radiographic progression despite a rising PSA, now at 43. However I am now experiencing periodic bone pain in the left hip area, mainly when I climb stairs. Tolerable but a worrying development.
Even with lack of visible progression I think we need to change something, especially given rising PSA and now apparent bone pain. SOC seems to be chemo next unless there is a compelling case for something else. Would appreciate thoughts on options to discuss with MO.
When you had a PET/CT in Aug 2021, what kind of PET scan was that?Can you get it again?
I found the report. It was an F18 PSMA PET. I have not had one of those since. That was done same time I started on Zoladex and later Zytiga. I will ask about getting it again. Would the compare potentially explain the PSA rise and inform the next step ?
Will find that out when I’m back in the country on Tuesday 4/2. Thanks.
The first thing I would do, would be to see an orthopedist. You’re 77, it may be arthritis or you may need a hip replacement. I have Mets in a lot of places in my bones and have yet to experience any pain. I try to see the glass half full and it’s kept me alive for 19 years with this disease.
I have had bone pain for years, especially at night time in bed. Dr refuses pain meds and sleeping meds. Times I don't sleep for a day sometimes 2 days. Finally, on my last consult he told me the pain was due to bone thinning. ie osteoporosis. If the oncologist knows or suspects this why wont he treat it? Not UK SoC? I am now considering getting a second opinion or going private to get the pain meds I need to be able to sleep or meds that will halt or reverse the osteoporosis which the NHS wont prescribe. Maybe your pain is from a similar problem? Have you checked your bone density?
I had a DEXA scan 3/2022. It showed Osteopenia (-1.3) in right femur (other side from current pbm). Am on Alendronic Acid 70mg/wk as a result. Suggest you ask about this - several on here take it or similar drugs such as Zometa. Am also on Adcal-d3 to help. I don’t know your circumstance but I would say you need medication to start reversing this and relieving pain.
That is terrible and just plain cruel.
My husband has had increasing bone pain for years despite PSA going down. His hip pain started to interfere with his activities such as hiking and biking 2 years ago. For the last month, he can't walk due to pain. He's getting palliative radiation in the hope of relieving the pain and walking again. Everyone's case is different, but I wish we knew about palliative radiation before it got to this point. Even morphine can't get his pain to bearable levels.
If it turns out to be a hip joint problem and not a PC one, and he has to have a total hip replacement, then definitely go for the 'anterior approach' surgery. Much less invasive and he'll be walking around confortably in days not weeks.
What next after chemo?
After Firmagon, what next?
Bone scan at low PSA
Bone CT results.
