Post treatment concerns

User

Posted 22 Aug 2022 at 22:45

I know this title pretty much encompasses everybody on here but I'm running blind and just want to throw a few questions out there.

Gleeson score 4+5=9

Spread outside the prostate

Gone into the bladder

Deffo in lymph nodes

Possibly in bone

These were the notes I wrote myself when I got my diagnosis in Aug 21

Since then I started HT, had Chemo x6, RT x36 which all finished on 2nd June with my PSA down to 0.04 and all signs in the bladder gone, which is a fantastic result.

My problem is I don't know which way I'm heading now, I'm back working but I feel terrible, I'm fatigued all the time, I get dizzy if I stand up to quick and my body seems to be slowly breaking, joint pain especially is really bad.

Thing is I'm used to dealing with injuries/illness then over a period of time improving feeling better and being able to do more and more. This is the complete opposite. During Chemo and Radio I had no major issues, yes it was s*** but I felt ok and I always recovered. Now months down the line I can barely get up out of the sofa. I have a manual job but it feels like its getting harder every week.

Sorry to rattle on, basically my question is has anyone else been down the HT/Chemo/RT road and did you eventually recover from the side effects or is it something I need to learn to manage and live with.

I also have no clue on prognosis, how likely is it to come back, average life expectancy etc. Any help/knowledge would be greatly appreciated. Thanks

User

Posted 23 Aug 2022 at 00:28

With the potential spread, it wouldn't be a good prognosis, but the treatment you have had in particular the RT, suggests that they think they can knock out all the cancer, including the bladder lymph nodes and spine.

I would say it's a bit of a long shot and it is about 50/50 whether it will return, but no point in worrying about that unless it does return.

Are you still on HT? If yes then fatigue, joint pain, are common side effects, and are very unlikely to go away until you stop HT. Add to all this that you are getting old. I was 53 at diagnosis I am now 58. I'm not as fit as I was five years ago and I get more tired now, but how much of that is down to treatment I don't know?

Your ability to do your job is being affected. If you work for a big firm or a state employer, you might be able to move sideways to a more appropriate job. If you work for yourself or a small company, you'll probably find yourself working til you drop.

Dave

User

Posted 23 Aug 2022 at 05:42

I presume you are still on hormone therapy.

I know you say you have a manual job, but how fit are you keeping yourself? My usual comment is to regard exercise as mandatory while on hormone therapy, to keep yourself fit. Your manual work alone might not be providing the level of exercise required to maintain the fitness level you need for the work while on hormone therapy.

I do get joint pains from time to time (and that predates any prostate cancer treatments). I found that eating a good portion of my protein in the form of oily fish like salmon makes that go away.

User

Posted 23 Aug 2022 at 07:25

Thanks Dave and Andy

Yes I'm still on HT,(zoladex) been told I should be on it for at least another 18 months. In fact I'm going in today to get my 3 monthly fix.

I'm fairly fit but can always be fitter, I'm loosing the weight I gained during Chemo and trying to stick to a healthy diet.

I guess I need to get my lazy ass of the sofa and do some more exercise.

User

Posted 23 Aug 2022 at 07:45

Important to keep excess weight off whatever is going on.

If you haven't been back to your GP get back there now! Any one of those treatments or your PC could be causing anaemia or some other blood imbalance. Your GP can check and sort that out.

User

Posted 23 Aug 2022 at 10:19

I did visit my GP when I started to get new symptoms, full blood tests were done and all ok apart from slightly high cholesterol. I have been put on a statin to help with this.

It may be me worrying about nothing and I will feel better in time, it's just good to hear if anyone else has been down this road.

User

Posted 23 Aug 2022 at 11:27

Don't underestimate cancer related fatigue. I was shocked how tired, forgetful and disorganised I became whilst on hormone therapy.

User

Posted 23 Aug 2022 at 13:25

A quick update.

I had my zoladex implant today with a nurse who unfortunately for her asked me how I was feeling. 10 minutes later she was scanning through my last blood test results and typing a recommendation to the GP to get in touch with me asap.

She seemed very concerned about the dizziness I feel pretty much every time I get up as well as the other stuff. It was nice to see someone who really seemed genuinely concerned and wanting to help.

So another blood test and a chat with the GP coming up.

I did get a sticker for being very brave after the zoladex implant though😁

User

Posted 23 Aug 2022 at 13:47

Both hormone therapy and radiotherapy around the pelvis area can cause anemia, so your hemoglobin might be low. In the case of radiotherapy, it should recover by a couple of months afterwards. It might be they decide to give you some vitamin B12 or iron to speed that up. (Wait until doctor checks your results rather than self-medicating though.)

User

Posted 23 Aug 2022 at 13:59

Thanks Andy

She did look at my B12 from my last blood test and apparently it was on the high side, which is not good either, hence the urgency to get another blood test. At least I now feel its not just me moaning about nothing.

User

Posted 23 Aug 2022 at 14:19

Just a sticker? Surely you get a lollipop?

User

Posted 23 Aug 2022 at 15:19

Lollipops have been banned for being bad for your teeth.

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

User

Posted 23 Aug 2022 at 15:39

Hi Steve just wondered if it could be the Statin that you have been put on, apparently they can cause some of the problems you mention ie the dizziness.

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