My Journey through HT and RT

You are absolutely right about having same appointment times. Decho. Mine were at different times just about every day. I quickly discovered that what's in your stomach makes a big difference on how quickly water passes through your system. One appointment was immediately after lunch and I ended up missing my a slot because my bladder wasn't filling. On other occasions I was having to let some out before I got in the treatment room and on one occasion my bladder gave way on the table. I'm sure on lot of this bladder anxiety could be avoided by having a set time every day.

All the best for the rest of the week Decho. Last week I went to a getting started with radiotherapy session with a radiographer at Maggie's in Cardiff. I asked about bladder level and movement and he said I would be having a cone CT scan each time and they can constantly see if the rectum is inflating because of gas or is not empty. As you were told, the machine will stop if the target area is moved too much.  Thanks again for all the tips and updates.

Ian

Thanks so much, I do really feel good. I’m just back from the men’s cancer support group where I always cheer them up. Being positive is so important in getting through this.

Sorry to spoil your party with regards to testosterone….I thought the same and then all of a sudden BANG!🤣🤣🤣 but not everybody’s the same so you might be lucky.🤞🤞🤞

At least though unlike having RP you’ll probably not get frustrated as like me, you’ll probably feel more like having a cup of tea….and I never, ever thought I would hear myself saying THAT!

Still can have a lot of pleasure though if you learn to adapt to new ways of doing things😉

Hi Decho

My OH is due to start RT early June and we have found your posts so useful.  Thank you for taking the time to explain the treatment as we now know what to expect which certainly has helped our stress levels.  Best wishes

One week on since the end of RT and things going generally well although I’m feeling a bit neglected by the NHS when it comes to aftercare. Last Saturday I started to get a real stinging pain when having a bowel movement. It felt a bit like haemorrhoids but I had an operation a long time ago which meant I shouldn’t get these….and there were no signs of them, so I assume it might be a bit of damage by radiation. I knew from the many hours I’ve spent on this wonderful forum that this was quite a common side effect and that anusol can help. I managed to get a hold of some but didn’t use it until I had checked with my CNS. She confirmed it was ok to use it and that I should consult with my GP for any issues with side effects - this surprised me a bit I have to say as I thought they were specialists there to help?
Anyway I started using the cream and it did help, so I went to my local chemist to see if they could prescribe for me as I needed some more, however they said I would need to get the prescription from my GP! I asked if I could buy some but she said No, as it wasn’t for haemorrhoids! I tried to explain it to her but she wasnt interested….she didn’t even consult the pharmacist! And you can buy it off the shelves in Asda no questions asked!

So, off to my GP surgery to see if I could get a telephone appointment with my GP- I always go in person as getting through on the phone is never easy.  Yes, we can do that…2nd June!!! Well that’s not much good😟 normally when you mention the ‘C’ word you get an appointment same day but this rather snooty receptionist was having none of it! I explained to her that I was having side effects that needed attention so she said I should send an email for the attention of my GP. Anyway I did that on Wednesday and so far haven’t heard a dicky bird!. I know they are busy but this is all very disappointing. A trip to my local Asda sorted the issue, but there are other things I want to discuss with my GP, especially about my wonky penis(as my wife calls it🤣🤣)

anyway the stinging is much better, still there a little and using the cream. Energy levels still good, been out twice on my ebike this week for 3 hour cycles(with coffee stops😊). This afternoon I’ve been out shovelling topsoil and now I am resting. Still managing my 10k+ steps most days and feeling good, although I was wiped out on Monday, kept falling asleep…mind you the weather was awful so I didn’t get much exercise.

I’m getting more confident now about my bowel urges…they only occur in the morning and I can now control them a bit better until I get to a toilet. I do still carry an emergency kit in the car but have never needed it. Today I was away out all morning and this was the first day I didn’t need to wear a pad. I’ve been wearing Attend F6 in the morning when out and about just to give me that reassurance that I wouldn’t embarrass myself if I had an accident…..they seem very secure although I have never actually tested them out for real!

So, I’m off to Fuerteventura a week tomorrow and can’t wait. I feel confident that I won’t have issues on the 4.5 hour flight as it’s in the afternoon.

got a busy weekend looking after our 2 grandsons, 7 and 9 and they always bring me joy and happiness!😊

I’ll update you again, next Friday, have a good weekend!

Here we go😊

Spare Pad, nickers and shorts….I always wear shorts from 1st April although it’s been damned cold in Scotland.
Pee bottle, bought mine from Amazon,
Towel for use with the above in case you need to use it and don’t want passing buses watching you🤣🤣
Toilet paper and wet wipes.
Waterproof mat for my car seat just in case I need to use it

Only used the bottle once on return from Edinburgh…TBH I think just having it there keeps my mind off having an accident!

Hi Derek

I agree that once you have finished RT the hospital does rather lose interest and relies on 6 mo PSA and testosterone tests. If PSA remains low then OK, if not we will see you. Although I had no pain I had several episodes of blood in poo up to 6 mo after finishing RT. Mentioned this to my CNS nurse who was pretty prompt in referring me to colorectal. Again swift response and had a colonoscopy. Two small areas of radiation proctitis found which did not require treatment but 3 colonic polyps found and removed. I think the current interest in bowel cancer may have concentrated minds!

Still feel a wreck most of the time with fatigue  achey muscles and joints, no libido. I hope things will I.prove if my T returns to normal. Next bloods in June. Fingers crossed.

Considering that I finished zolly last Sept, it's effects are dragging on. If more people realised how awful it can make you feel perhaps they would not have it, although the alternative is certainly worse!

Pleased you are getting on OK despite the bowel problem.

Good luck to us all.

Peternigel

2 weeks on from finishing RT and feeling great. I would say bowels more or less back to normal and my confidence that I can control them is back. Still have some urinary poor flow issues at night but other than that I’m feeling much better than I expected at this stage.

Off to Fuerteventura today and not nervous about the 4.5 hour flight at all. Will take my  MacMillan cancer card just in case.

I still haven’t heard back from my GP, went to the surgery again on Wednesday and they had NO record of my email. Different receptionist this time told me to write a note and leave it which I did…still nothing.  Before and during my RT I couldn’t fault the treatment I have had…but the aftercare totally sucks! Nobody seems to want to know😟
comparing this with a friend whose not long had RARP and has had really good aftercare and had his post op  checkup with his surgeon this week. I’ve felt  for some time that those of us on the HT/RT route are treated like second class ‘passengers’, which I think is totally unfair given that we have up to 3 years of treatment to endure.

Anyway todays a good day and looking forward to some time in the sun(shade😎)…lots of walking and cycling….and a few sangrias watching the world go by😊

Hi Decho,

I'm sorry to hear of your problems getting treatment for Peyronie's disease.

I know that you're in Scotland and that you've had radiotherapy, not surgery.  I'm in England and was provided with the Soma Correct device from the NHS after Prostatectomy.  However, I was surprised that you seem to have been quoted £700 to buy it privately (or did you mean to buy both the SomaCorrect and the Response X?).  I understood that the Soma Correct costs about £300 (from iMedicare, I believe).   I haven't developed Peyronie's disease (yet?) and I've been using it for about 8 months.  I hope this information helps, but if I've misunderstood your situation, please accept my apologies.

Hope you can get a satisfactory solution.

Best wishes,

JedSee.

The following post is based on my experience in England, guidelines in Scotland may be different.

When you read medical guidelines you should read them as if you were a solicitor, not a medic or a patient. I learnt this from an old man who blagged his way into jumping the queue for a heart bypass. I won't go into his story, and I won't pass any moral judgement on him or anyone else.

In England if you have cancer or are suffering from the symptoms of cancer treatments, you can have free prescriptions for five years. (In Scotland and Wales everyone gets free prescriptions anyway)

During HT, I didn't have much libido or erections, but there were times when they would have been useful. My GP was happy to prescribe Viagra (and other pde-5s) before I finished HT: though they weren't very effective.

Post treatment erections were not very strong, but pde-5s were now effective. As a result I am still prescribed pde-5s. My free prescription card expired this year, but as I am still prescribed medicine for the effects of cancer treatment it was renewed without question. Which means I get all my other prescriptions free. The only problem is that I don't actually have any other health problems (I'm not a yorkshireman, but lived there long enough to pick up some of their habits, like complaining when I'm not getting something for free, even if it is because I'm in good health).

Derrick, the important thing is your ED and Peyronie's disease is caused by cancer treatment. Just because RARP is a common cause of ED, it doesn't exclude you from being treated for HT induced ED and Peyronie's, unless the Scottish guidelines explicitly state it is only for RARP patients.

Edit: just seen Lyn's post, same as mine but much more concise.

Edited by member 29 Jun 2023 at 19:23  | Reason: Not specified

On a more positive note, this week I have started a new regime of exercise: Swimming, Gym, basic Pilates and EPSOM salt baths. Still doing the walking and cycling as well but maybe will cut down the the mileage on my ebike.
Its very early days yet but the aching joints do seem to be a bit better….long May it continue🤞

Well today marks a milestone, exactly ONE year on PROSTAP and I had my next injection. The CNS looked up my file and said ‘I see you’ve to be on this until May 2025!’ 😟 Oh well, let’s not dwell on it, much better to just get on with  life and be proactive in tackling the side effects.

Today was a happy day for me, I bought a basketball hoop for my 7 year old grandson who has suddenly become a fanatic like his mum and dad, an I can’t wait to see his smiling face when he sees it in the back garden….need to build it up first though!

The joint ache and stiffness is still there, but as recommended, I have started swimming and that DOES make a HUGE difference…it really does ease it, and now when I get into the pool I can actually swim quite well, a lot slower than before but quite acceptable. I made the mistake of going to the pool early afternoon today and it was full of screaming kids having a great time  on their summer holidays. Fortunately they still have the 3 swimming lanes so was able to do 30 lengths as well as some water aerobics. Also going regularly to the gym to try and build up my muscles. Tomorrow I’m out on my ebike so I KNOW that will be a happy day…as long as it doesn’t rain!

One of the guys in my Maggies Grouo was sent to see a specialist about his joint ache and he was prescribed something called DermaCool. It contains 5% menthol and he says it’s made a big difference. I ordered some online so will see if it helps, anyone else ever used this? I’ve used Mineral Ice before(discovered it in the USA) which contains 2% menthol and you can certainly feel a difference so it will be interesting to test out this product as it’s much cheaper.

Well, back out in Fuerteventura for a couple of weeks to try and take my mind off the forthcoming PSA test on the 14th, 3 months after finishing RT and my Onco appointment on 23rd. Oh, and it’s nice to escape the dreadful Scottish Weather. Corralejo is just such a chilled and vibrant place, great for relaxing.
And the pump came with me in my hand luggage. I watched my bag carefully as it went through the scanner…..will it go right😱 or will it go straight on😊? Well it went straight on(phew!) but I had already worked out what I was going to say if the asked. “I’ve got a wonky Willy and it’s a correction device, I’ll demonstrate if you like but you might get embarrassed!”.🤣🤣🤣 I’m going to have to learn to say that in Spanish for the return journey, mind you they are so miserable at security I doubt they’d find it funny!😟

The vacuum pump has already started to make a difference. Too early to see whether it’s helping with Peyronie’s, but I’ve definitely notice a difference in size in my flaccid state….and it feels more alive! The pump is really easy to use and clean, I do it every morning unless there’s something more ‘fun’ on the agenda.

Grandsons arrive next Wednesday for a week with their dad so planning a very busy schedule…water park, wildlife park, glass bottom boat, beach and so on. Grandchildren just make your life SO complete.