Pain, despite very low PSA: I had a... - Advanced Prostate...

Advanced Prostate Cancer

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Pain, despite very low PSA

Pianodude profile image
9 Replies

I had a PSMA scan in March. It didn't show much activity other than a new spot on my sternum, which we hit with radiation. My PSA is very low. But, in the last month I am getting pain in my lower spine, right hip, and rib cage. It is not severe pain, but enough that Advil does not quite take care of it. It is very reminiscent of the pain I had just before I was diagnosed in May 2020. Any thoughts? I was thinking we should do another bone scan in case the cancer is not expressing PSMA. Maybe I am just worrying too much.

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Pianodude profile image
Pianodude
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9 Replies
Javelin18 profile image
Javelin18

I have metastatic cancer to my bones. I've had pain in my ribs and in my hip which was caused by spinal lesions pressing on nerves. An MRI is much higher resolution than other scans and may show if spinal lesions are causing the pain. In each instance, the pain was gone after a single radiation treatment.

Docker53 profile image
Docker53 in reply toJavelin18

My husband had the same, a pain in his hip where he could barely walk and one radiation treatment took care of that.

Pianodude profile image
Pianodude in reply toJavelin18

When I was diagnosed, the bone scan showed activity from my skull to my knees. A follow-up scan after 1 year showed reduced activity. The PSMA showed that almost all of the original mets we're inactive. I just wonder if the PSMA scan is missing something. I had very little pain from the time that my chemo ended until a little over a month ago.

CAMPSOUPS profile image
CAMPSOUPS in reply toPianodude

I don't have much to add except a selfish question lol.

How did you manage to get a scan recently? Your PSA is low. Did you complain of the pain? Or was it routine monitoring?

I can't seem to get a scan unless I have marked signs of progression (PSA, pain symptoms etc.).

Pianodude profile image
Pianodude in reply toCAMPSOUPS

They gave me the scan because my doubling time rose back in January and February. I had the scan once my PSA got up to 0.7. We added on Nubeqa and my PSA is again 0.1.

Tall_Allen profile image
Tall_Allen

A bone scan may not show it. If you can, ask for a NaF(18) PET scan. If bone metastases show up, you may want to try Xofigo.

EdBacon profile image
EdBacon

Pain doesn't always equal active mets. Looks like you were diagnosed with a high PSA and likely have some skeletal damage. Even though a lot of it heals up, my doctor explained to me that the damage from the cancer can cause pain, even without active mets. There's also joint pain, arthritis and other factors so best to have it checked out.

CAMPSOUPS profile image
CAMPSOUPS in reply toEdBacon

Yea the tissue and ligaments around where some of my more prominent bone mets are/were is damaged and pain comes and goes. I lost about 40% of range of motion in my right arm due to bone mets damaging ligament and tissue in my shoulder and scapula.My legs are compromised and painful in my hip area but thankfully not everyday.

tango65 profile image
tango65

Request a Pylarify PET/CT, much more sensitive than a bone scan or a CT scan.

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