Progressively Getting Worse

User

Posted 22 Nov 2020 at 15:40

Hello everyone. I am 67 years old and was diagnosed with prostate cancer in early June 2019. My PSA levels had been monitored for some years but had started to rise. At the time of my biopsy it was 11.0. I was put on Prostap and continued at 12 week intervals. By November 2019 my PSA was measuring around 0.5 / 0.7. I began radiotherapy in March 2020 and there followed 37 sessions. By this time lockdown was implemented but everything was fine until about 10 sessions were remaining. The water works were acting up. Medication solved the problem effectively and treatment was finished in early May. There were various side-effects in the weeks and months which followed but all seemed to pass or lessen as time went on. I have had two follow-ups by 'phone and my PSA has been recorded twice as being <0.1. I am to finish with Prostap in June.

Recently, I have been feeling worse than at any other time in my treatment. I have always tried to keep up with regular walks. I did the last 118 km of the Camino Portuguese last September. I continued regular walks and averaged about 4 miles per day during radiotherapy. Since then I have gone through periods where I have been unable to do as much but a little gardening helped keep me active. I would, when feeling able, go through periods where walking was possible but general feelings of being unwell would always return. Fatigue and motivation were a constant. October was a particularly bad month for me. I would find that after a walk I would not exactly be breathless but hours later would constantly be taking deep breaths. I would feel (or imagine) pains in my chests, and experience dizziness. These would pass. I have had my bloods done (nothing is indicated) and an echocardiogram has been brought forward to assess things further.

I am finding all of this difficult as lockdown returns once again. It is made all the more difficult by the lack of face-to-face consultations with anyone. Has anyone experiences to share which can put my mind at ease.

Edited by member 22 Nov 2020 at 21:39 | Reason: Not specified

User

Posted 23 Nov 2020 at 09:50

Hi Michael, sorry you are here. I don't know about your symptoms, it could be the HT. I didn't suffer to badly. You're right that lockdown is not helping any of us.

Dave

User

Posted 23 Nov 2020 at 11:10

Hi Dave

Thanks for posting.

I have been determined to face all the treatment head-on. I have read that exercise is important and as I have always been a keen walker and touring cyclist, I have made an effort to do just that.

Any side-effects have been met and overcome; urine problems, sciatica problems, the usual hot flushes, diarrhoea, urgency with bladder and bowel, etc. All these have come and gone.

I have had a heart attack - 18 years ago; 1 stent - and I suffer from glaucoma. Every two years I have an echocardiogram to check on a 'floppy' heart valve.

What is concerning me is that instead of progressing through all these side-effects I seem to be going backwards.

In the last six weeks or so, I am finding exercise difficult. I increasingly have to slow down. On occasions, hours after any walk, I begin to feel unwell; I am having to take deep breaths, with uneasy feelings in my chest, indigestion. I am sleeping very badly and during the day I can suddenly begin to fall asleep. Bouts of uncontrollable yawning are common and now frequency and urgency with passing water has reared its head once more

I am wary of how big a part anxiety is playing in all this. The difficulty with arranging an appointment with a GP is not helping. Don't get me wrong, I have had support but on only one occasion was it a face-to-face - which is difficult; just as explaining online is.

My next echocardiogram is being brought forward and I believe a heart monitor will be fitted to discount any problems in that area.

I hope that by talking I can overcome other concerns.

Edited by member 23 Nov 2020 at 11:12 | Reason: Omission

User

Posted 23 Nov 2020 at 19:43

I'm sure it's the HT which is the culprit for most of this. Extreme fatigue (and fatigue is assuredly not merely "feeling a bit tired") is an extremely common side effect of HT.

When you mention problems with the waterworks, what sort of problems? Difficulty peeing? Needing to pee very often? Something else? If it's difficulty and you're not on it already, ask your GP for Tamsulosin. It's the only medication I'm still on two years after my RT and it works wonders.

Very best wishes,

Chris

Edited by member 23 Nov 2020 at 19:44 | Reason: Not specified

User

Posted 23 Nov 2020 at 20:18

On the basis echocardiogram is fine then your side effects are within the range expected. My first 12 months were not good and in general as you report. Going from being very fit pre HT to a 20min walk would be it for the day. RT although well tolerated added to the side effects. Tiring yourself out and being anxious could well see you going backwards

Don't be so hard on yourself, rest for a day or so if need be.

Ray

User

Posted 23 Nov 2020 at 20:35

Thanks Chris

I keep telling myself that it is fatigue but after so long and so far down the route I am finding it so difficult at times. I have overcome spells of feeling bad up until now but it has never felt this bad. As I said, anxiety can't be helping either. I have three more injections to go.

Yes, I was on Tamsulosin towards the end of the radiotherapy and for about six weeks after. It seems that similar problems are arising once more. It is more urgency and frequency at times. I had been trying to 'train' both my bladder and bowel and thought that I was managing to do just that. I will 'phone the Radiotherapy Nurse and ask her opinion on maybe starting Tamsulosin again My Urology Consultant on his last 'phone consultation has said he will arrange a Flow Test. After that I am being handed over to the Radiology Consultant and Team from now on

Everything just seems to be never ending at present. This latest development is difficult to get through.

Thanks for your words of reassurance Chris.

Edited by member 23 Nov 2020 at 20:46 | Reason: Spelling Typo

User

Posted 23 Nov 2020 at 20:43

Hi Ray

It is as you say. I have been an active type. Travel, walking and cycling were my life and I feel I am no longer that person anymore. Not only that I feel I may never be again. As well as trying to maintain a level of fitness, such as it was, I have been planning what to do once I get over all this. Then when I hit the wall, I can get quite emotional and down at times. It is hard to explain to anyone other than those, such as yourself.

Thanks once again for your words of assurance.

User

Posted 23 Nov 2020 at 22:30

If not done so already, give the PCUK nurses a call - phone number is at the top of the page. PCUK did a trial about 3 years ago, looking at things that can help with HT related fatigue and they may have suggestions you haven’t thought of. General view is that being active and pushing on is the best way to address fatigue but also that it is essential to rest when necessary. A previous member, Old Al (who was actually only in his 50s at diagnosis despite his name) was using a wheelchair until he took up swimming and found that the low impact exercise dramaticallyimproved his mobility and quality of life. Sadly, it may be a long time before any of us can go swimming again but there is hope.

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

User

Posted 24 Nov 2020 at 04:23

My father-in-law aged 86, is on a cocktail of Tamulosin and Finasteride (upon my suggestion to his GP), and instead of him getting up seven times a night, it’s only three. So worth trying the combo in your case?

I guess Dad’s got prostate cancer like most here, but I agree with his GP’s thinking, why put him through all kinds of tests and biopsies when the outcome will be the same - he’ll die of something else.

Cheers, John.

User

Posted 24 Nov 2020 at 06:16

Thanks so much for advice. I mentioned Tamsulosin as that is what had been effective before. As you say, there must be others.

I am also aware that being more pro-active re. timing of fluid intake can lead to less of a problem. It may also be that my anxiety is as much a factor as any physical damage caused by the radiotherapy. In saying all this, it has to addressed to lessen its contribution to my fatigue.

Once again thanks. It is good to share our experiences.

User

Posted 24 Nov 2020 at 18:43

Thanks Ray for your reassuring words. One minute I feel that I am on the way to recovery the next I am feeling awful. Today was a example. Most of today I have been fine. I eat and drink well as always. Now I am feeling really bad for no reason at all. A slight feeling of nausea is a new experience. And so the anxiety sets in once more. It is never ending.

Notification

Join the online community now.