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PSA 0.6 after Radical Prostectomy

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User

Posted 03 Nov 2021 at 12:40

Hello all,

I thought I'd just post an update and ask a question. My treatment is going well, on Enzolutamide and regular Prostrap injections that seem to be keeping PSA under control. Usual side effects flushes, tiredness but am experiencing a great deal of joint pain in my hands, knees and have lower back pain. The pain is at it's worst first thing in the morning and late evening. Have been to GP who thinks it may be arthritis so I have had blood tests to check this out (awaiting results). Question: has anyone else experienced these symptoms during their journey?

Thanks in advance

User

Posted 05 Nov 2021 at 11:37

Hello Pashes,

I experienced all of the symptoms you described whilst on Prostrap, however I do not drink alcohol or smoke & have a strict diet, I lost 2 stone in weight doing this along with 1 hour a week exercise ie walks & dumbbells to keep muscle strength in arms .

Occasionally I took Ibuprofen to ease discomfort but have not taken any for months.

Kind Regards

James

User

Posted 05 Nov 2021 at 16:49

Hi Pashes,

I experience exactly the same symptoms as yourself, first thing in the morning and after 8pm in the evenings. Hands, legs and lowerback. I am on Enzalutmide and 3 monthly decapeptyl injections. I find weight training alleviates them somewhat but I do still experience stiffness especially if i sit in one place for a long time (> 45 minutes). I use hand grips/strength builders which i purchased on Amazon as I also struggle to do simple tasks like opening jars.

Cheers

Jay

User

Posted 05 Nov 2021 at 18:37

Thanks so much for your replies James and Jay.

What a relief, I now understand what's going on. I'm just surprised my Onco or GP's didn't pick this as it appears not to be an uncommon side effect of Enzo or Prostrap. So, now it's more exercise and a stress ball or hand grips for me.

Thanks again

Peter

User

Posted 05 Nov 2021 at 19:34

Swimming will probably help

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 09 Sep 2023 at 17:09

Hello all,

It's been a while since my last update so I thought I would let you know how my journey is going so far. I've been on Enzo and Prostrap for a couple of years now and my PSA is behaving (undetectable). The downside is that The Enzo has been playing havoc with my bones, I have osteoporosis in most of my joints and arthritis in my hands. These are all being treated various drugs or injections and my Oncologist has sent me to see an Alternative Therapist for massage and acupuncture (yet to have the acupuncture). I'm going to the gym 3 times a week which helps and I end each session with a swim. The joint pain is very debilitating so much so that I often wonder how long I can bear the treatment before I say enough is enough, but I keep reminding myself what the alternative could be. I also remember the Onco telling me that the cancer is a particularly aggressive variety (I didn't know there were varying degrees of cancer, I need to do more research) and that the spread to the lymph nodes was significant.

So that's it so far, I wish you all the very best.

User

Posted 10 Sep 2023 at 07:17

So far as I can see you had a prostatectomy, your psa went up, you were put on Prostap and Enzalutamide and referred to an oncologist, who you are still in contact with.

Have you has any further treatment such as radio therapy or follow up surgery or maybe opted for AS? You seem to be relying on hormone suppressants alone.

Jules

Edited by member 10 Sep 2023 at 07:53 | Reason: Not specified

User

Posted 10 Sep 2023 at 11:13

No Radio or chemotherapy, I was diagnosed just before the first full lockdown so other treatments were not available at the time so I was put on Enzo. These seem to be doing the job but it's a struggle with joint pain etc, I must admit now that I am almost at the 4 year anniversary I wonder how long I can persevere as the symptom worsen by the day.

Thanks for your interest

User

Posted 10 Sep 2023 at 11:58

Pashes, your treatment following recurrence, may have been appropriate at the time. I wonder if due to covid you have slipped through the net . Salvage RT after surgery is pretty common. Was salvage RT ever discussed,did you refuse it. Not sure how scans would work now you are on HT.

In your position I would call the prostate cancer UK nurses,( number at the Top of the page) and discuss your situation.

Thanks Chris

User

Posted 10 Sep 2023 at 13:35

Hi Chris,

In some ways I looked on the Covid lockdown as a god-send as I was put on Enzo immediately (at the time it had only just be cleared by NICE). I probably have fallen into the trap of thinking there's no other option for me as things have been pretty quiet apart from the usual hormone treatment side effects (hot flushes, tiredness etc). I have had a PSMA scan in London and that didn't show any obvious signs. My three monthly checkpoints have been over the phone with the Onco which isn't very personal and difficult to ask questions.

I will take up your suggestion to call the cancer nurses for their opinion.

Thanks again

Pete

User

Posted 10 Sep 2023 at 21:44

Colwickchris makes a good point. I started on a similar path to you. Diagnosed T3bN0M0, Gleason 4+3. Opted for RP and 34 lymph nodes removed, one of which tuned out to be cancerous. Post op PSA was 0.28 and histology on the prostate revealed a positive margin. A subsequent PSMA PET scan didn't show up anything significant, I underwent Salvage radiotherapy (SRT) to the prostate bed along with 6 months of hormone therapy. It's still relatively early days but it does seem to have done the trick. Successful SRT could mean you can get off the hormone therapy.

User

Posted 11 Sep 2023 at 01:09

Originally Posted by: Online Community Member

The PSMA scan results were given me by the Consultant Urologist who said there was no indication of significant metastasis. No treatment plan was mentioned apart from continuing with Prostat and the transfer to the Oncologist. I will talk to my GP and ask what correspondence he/she has.

Pashes, your first post indicated that you had a T3a N1 M0 staging but this post about a month later seems to suggest that there were no significant mets. based on a PSMA PET scan after your prostatectomy. If that's the case you're very much in the same position as ChrisB above. I can't figure out if you were taking prostap at the time of your PSMA scan because if that was the case it would have reduced the size of your mets and made it hard for a scan to pick anything up.

A key question for you at this time will be, what mets do you have and where are they? There's some chat between Lyn and Andy, above, about the location of lymph node mets. and, if you have them, location matters when determining if treatment is possible.

There might be some missing parts of your story that would make it clearer why you've had no follow up treatment and very little help from your oncologist but if you don't have any mets there is definitely the possibility of further treatment.

As you probably know, the drugs you've been prescribed don't last indefinitely and at best, only put you into a holding pattern. I hope the prostate nurses can help with some ideas to get things moving.

Jules

edit: An afterthought here. Sometimes when people have been on drugs like those you're taking and their progress is good, they can be given a "holiday" from them for a period. I don't know if that would help identify if you have any residual mets but that's going to be essential if you go for salvage RT. Andy62 or the cancer nurses might be helpful on this option. Really, your oncologist should have been more involved and you should have been better informed by him. Might be time for a new one?

Edited by member 11 Sep 2023 at 18:13 | Reason: Not specified

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