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Diagnosing pain from prostate cancer

Posted by jehjeh @jehjeh, Oct 23 12:13pm

My husband has metastatic prostate cancer. Imaging showed that it is in his bones. He's been on Eligard for one year and his PSA remains below 1. However, he's experiencing increased back pain and I don't know if it's from the cancer or his chronic back issues. I mention it to oncologist but with dementia my hubby forgets about it and says he's fine. Dr. says that's good and he moves on.

Nurse once told me that radiation could help if pain became an issue. Has anyone had experience with this?

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jeffmarc | @jeffmarc | Oct 23 12:39pm

Metastasis can still continue to occur, even while on Eligard. You want your PSA below .1, below 1 could mean a lot of things, what type of numbers have his PSA tests shown?

It is not uncommon for metastasis to the bone to cause pain.

I get lower back pain occasionally, and the only metastasis I have had on my back was on L4 and I’ve had it zapped. I’ve had occasional pain (once or twice a year) in my lower back for 25 years, before I had cancer. When I get the pain I put on this belt I have and within a day or two it goes away. So getting lower back pain is not necessarily tied to the cancer, but it is a possibility that it is caused by the cancer.

Unless you can figure out exactly where the pain is and if it is in the same spot where a metastasis exists, can you figure out what exactly is causing it? The next time he complains about it try and locate it right then so you know where it is actually occurring.

If his PSA is above .2, or a little bit higher, he could get a PSMA pet scan to see if there’s a metastasis in that area of the back. Once you have the scan done you could arrange to have SBRT radiation to that spot on his back, if the scan shows a metastasis.

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1 reply
jehjeh | @jehjeh | Oct 23 3:00pm
In reply to @jeffmarc "Metastasis can still continue to occur, even while on Eligard. You want your PSA below .1,..." + (show)
@jeffmarc

Metastasis can still continue to occur, even while on Eligard. You want your PSA below .1, below 1 could mean a lot of things, what type of numbers have his PSA tests shown?

It is not uncommon for metastasis to the bone to cause pain.

I get lower back pain occasionally, and the only metastasis I have had on my back was on L4 and I’ve had it zapped. I’ve had occasional pain (once or twice a year) in my lower back for 25 years, before I had cancer. When I get the pain I put on this belt I have and within a day or two it goes away. So getting lower back pain is not necessarily tied to the cancer, but it is a possibility that it is caused by the cancer.

Unless you can figure out exactly where the pain is and if it is in the same spot where a metastasis exists, can you figure out what exactly is causing it? The next time he complains about it try and locate it right then so you know where it is actually occurring.

If his PSA is above .2, or a little bit higher, he could get a PSMA pet scan to see if there’s a metastasis in that area of the back. Once you have the scan done you could arrange to have SBRT radiation to that spot on his back, if the scan shows a metastasis.

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Thanks for this information. His PSA has remained at .04-.02 the entire time. Still, I hadn't realized new metastasis could still appear. I'll need to have a conversation with the Dr. to see if that could be what we're dealing with. And good idea about noting location of pain when it happens.

This what I love about this site. I'm learning what questions to ask.

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stevecando54 | @stevecando54 | Oct 23 3:56pm

I have it in my bones. I also have arthritis in my left hip area. Someone posted on here that the pain from cancer doesn't come and go, it stays. This tidbit made me feel better. Can't help when getting some pain, we worry it's spreading. Best to keep asking his staff questions about the pain. Best to you and yours.

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northoftheborder | @northoftheborder | Oct 23 4:47pm

What @stevecando54 said.

My cancer metastasised to my middle spine and damaged my spinal cord severely, so I have phantom nerve pain all over from the ribs down, and conversely don't always feel pain that I should. It took me time to trust that pains that come and go or move around aren't new metastases (a sustained PSA < 0.01 helps my confidence a lot as well).

I write down anything I'm really worried about when I notice it, then erase it if it's gone away again in a week or two. Very little of it makes it to my quarterly oncology appointments, and of the ones that have, medical imaging has confirmed they come from other causes: recurring bladder and rectal pain from radiation damage, and recurring pain between my spine and right shoulder blade from a knot of fat, muscle, and scar tissue left over from my emergency spinal surgery.

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jehjeh | @jehjeh | Oct 23 5:39pm
In reply to @northoftheborder "What @stevecando54 said. My cancer metastasised to my middle spine and damaged my spinal cord severely,..." + (show)
@northoftheborder

What @stevecando54 said.

My cancer metastasised to my middle spine and damaged my spinal cord severely, so I have phantom nerve pain all over from the ribs down, and conversely don't always feel pain that I should. It took me time to trust that pains that come and go or move around aren't new metastases (a sustained PSA < 0.01 helps my confidence a lot as well).

I write down anything I'm really worried about when I notice it, then erase it if it's gone away again in a week or two. Very little of it makes it to my quarterly oncology appointments, and of the ones that have, medical imaging has confirmed they come from other causes: recurring bladder and rectal pain from radiation damage, and recurring pain between my spine and right shoulder blade from a knot of fat, muscle, and scar tissue left over from my emergency spinal surgery.

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I'm so sorry that you have been through so much. I'm grateful to you and others for sharing your stories.

I'll start keeping a list like yours. I had a sister who kept great notes when she had cancer. (She was the organized one in the family) Not only did it help her remember things and spot patterns but her notes have helped family members by giving us tips about caring for a loved one who is ill.

There are so many causes of pain that one must be a detective to sort them all out.

Blessings, jehjeh

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