Looking for advice on post treatment pain

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User

Posted 29 Apr 2024 at 12:13

Looking for some advice. My Husband started having pain in the right side of his neck and under his right armpit when he was half way through radiotherapy. It has never gone away (Oct 2023) and over the past few months it started to hurt in his lower rib on the same side and now his left side neck and armpit. Also, across his lower back. We asked for an early PSA test and thankfully the results were encouraging at 0.2 but we’re worried that something else might be going on. Our Macmillan nurse says it can’t be related to Prostate Cancer due to the PSA results and advised he continue to take pain relief and if still worried go and see his GP. He’s burying his head in the sand as he doesn’t want to have to start going through it all again. Has anyone had a similar experience? When diagnosed he was T3B N1, Gleason 9, PSA 134.6 with significant spread across the pelvis, seminal vesicles and lymph nodes throughout the pelvis. He’s had 6 rounds of Chemotherapy, 20 radiotherapy and on Zoladex for three years (completed 18 months so far). Any advice is welcome. Thank you. Regards Maggie

User

Posted 29 Apr 2024 at 17:32

Sorry I can’t help you Maggie but I’m replying to bump you up the forum in the hope that someone can.

I hope you find an answer to the issues.

Derek

User

Posted 29 Apr 2024 at 17:59

Thank you Derek

User

Posted 30 Apr 2024 at 22:38

I can't offer much help. I am inclined to agree with the nurse that with a low PSA that implies not many cancer cells around.

Worryingly LynEyre's father (or father in law) had a declining PSA as the cancer got more aggressive and because the PSA was declining no one paid much attention to it.

I think the declining PSA with increased cancer is very very rare, so I hope this isn't the case for your other half. I also don't know how you would convince an NHS oncologist to even investigate that possibility as it is so rare they won't even be thinking about it.

Based on the fact Lyn's father is the only time I have heard of this and there is no academic literature on it, it may be better to look for any other plausible cause rather than assuming the cause is cancer.

Dave

User

Posted 01 May 2024 at 07:35

I think he needs an appointment with the oncologist, and to get a scan, to see what's going on with lymph nodes.

User

Posted 01 May 2024 at 09:11

Thank you Dave,

His next PSA is in June. Said he wants to wait until then to see how things go.

Fingers crossed

User

Posted 01 May 2024 at 09:21

Thank you Andy,

I was hoping the Oncologist would check it out given that the pain started on day 10 of having his lymph nodes in his pelvis zapped with radiotherapy. Surely it's all connected in someway. The nurse said as long as his PSA is going down then it's not due to Prostate Cancer.

I would prefer him to see his GP as suggested before his next PSA to see what he recommends but unfortunately he doesn't want to.

Thanks again

Maggie

User

Posted 01 May 2024 at 09:52

He needs to see his oncologist, not so much his GP, and not the nurse who has already been ineffective.

Maybe the GP would also think he needs to see the oncologist and get that arranged.

On the other hand, if he doesn't want to see clinicians, then doing anything is going to be difficult.

User

Posted 01 May 2024 at 10:22

Yes Andy,

I was hoping to see the GP before June and for him to tell us to talk to the Oncologist.

Just need to persuade Hubby

Thank you

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