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RT?

User
Posted 29 Mar 2018 at 15:36

Diagnosed at the end of last year; PSA of 82 and Gleason of 8. Localised to the prostate. Have had 2.5 months of Zoladex (not much in the way of side-effects) and the PSA is now 3.9. The oncologist proposes RT - 37 sessions. I'm very concerned about the potential side-effects of the RT and whether it'll mean I end up with a very poor quality of life afterwards (incontinence, extreme tiredness, etc). I'm also extremely claustrophobic and the RT itself is very unappealing because of that.


I'm wondering about just continuing with the Zoladex and declining the RT - clearly that would have implications for the overall outlook. Any views would be very welcome.


I'm 62 and - apart from this - very fit and active.

User
Posted 29 Mar 2018 at 19:10

One side effect you nay experience with both surgery and Combined HT/RT that is seldom mentioned is that you may experience a reduction in your penis size, despite working it which is important. But HT/RT of any type if not completely curative, delays the need for further down the line treatments in the future. There is no pain whilst having External Beam and with Brachytherapy the effects of planting seeds or insertion temporally of high dose probes are operations that are got over in a matter o days. Brachytherapy seems to be the most successful form of RT which is further improved by supplemental External Beam as part of the treatment. (However, Brachytherapy is not suitable for all men and not every hospital can provide it).

Barry
User
Posted 29 Mar 2018 at 20:26
I had 4 weeks of RT plus the HT. The machine at my hospital was one of the new one that manipulates the beam to better fit the cancer, called Trubeam. About 2 weeks in I started with morning diarrhoea and frequent peeing. No tiredness. The aforementioned symptoms carried on for 2 weeks after finishing RT but since then until 10 months after finishing I have been well and happy. I have now got what I believe to be radiation cystitis and have frequent and painful pees on average 4 times a night. With self treatment of 1.5 - 2 litres of drink a day including Cranberry juice, it’s easing but the hospital suggest a flexible cytoscopy to have a look at the bladder and urethra.

Incidentally, the RT machine rotated around me 45 seconds one way, then 45 seconds the other way. I asked why not 90 seconds in same direction. The radiologist said if it did that the wires round the back would get a bit twisted!!

User
Posted 30 Mar 2018 at 14:09

You are very lucky if it hasn't affected you - HT-induced atrophy is a very high % side effect -
- no testosterone leads to shrunken testicles,
- loss of libido leads to penile atrophy,
- lots of info on here from men who found that once HT finished, they got their libido back but could no longer get a large enough erection for penetration in common sexual positions
- a number of research papers on the lack of advice / support / clinics for men starting HT re maintaining penile health

It will depend on the HT - if you are only on bicalutimide, it does not apply to you.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Posted 29 Mar 2018 at 16:10

I think you need to clearly ask whether the RT is a potential curative pathway or not. The hormone therapy is systemic only and will fail over time. That time can alter from man to man. If the RT is meant as curative then you seriously need to think about giving it a go. I believe the RT machines are not claustrophobic at all. It moves around you quietly and is not like a tunnel. The side effects are always a massive worry , but many can be tolerated or handled with the right advice. Best of luck whatever you choose


If life gives you lemons , then make lemonade
User
Posted 29 Mar 2018 at 16:24
Chris beat me to it and is spot on. Key to your decisions are the staging details you have been given - make sure you get this info and post it here if you want to.

Second opions from oncologists etc are also a good idea.

If the cancer is still localised some kind of local curative treatment is essential IMHO. (surgery, radiotherapy etc).
User
Posted 29 Mar 2018 at 16:29

Thanks Chris J and franclj4


The RT is intended to be curative - the cancer's localised with completely clear CT and bone scans.


It's very difficult to find straightforward information about the risk of side-effects (% of people getting them, % who continue to have long-term effects etc etc) and thus tricky to make an informed decision. Understandably, the medics have to tell people about every possible side-effect, but that isn't at all helpful in deciding what's best for an individual. I've got a month or so to make up my mind.

Edited by member 29 Mar 2018 at 16:47  | Reason: Not specified

User
Posted 29 Mar 2018 at 16:51

rw101,

I think your expressed fears are groundless provided that you focus the RT team's attention on avoiding spillover to the rectum and bladder. This is really putting the physicists on the spot, as they have only the three tattoo points as fixed points and have to create a template to focus the beams, using those fixed points and the adjustability of the template. Talk to your oncologist about how he/she will maximize the safety of the procedure from this viewpoint. If you're not satisfied, get a second opinion!

AC

User
Posted 29 Mar 2018 at 17:14

Thanks AC - most helpful.

The oncologist - who comes across as really expert and is very open to discussion - appeared very certain that there'd be unpleasant side-effects (especially incontinence) to the RT. I'll certainly talk more to the radiology team about what they could do to lessen this when i go and see them.

But if a high % of people have extreme tiredness and/or incontinence as a long-term effect of the RT, it'll me make much less keen to go down that route. I'd be interested to know if there's any published research on this.

User
Posted 29 Mar 2018 at 17:22

Not everyone has those side effects - my husband worked throughout and carried on playing rugby without any problems. 5 years on, there is still no sign of any bowel issue, incontinence or ED. It may depend a bit on where the cancer cells are most prevalent - perhaps they are close to your bowel - but J had his bladder irradiated with his prostate without any issues. You could ask about SpaceOar gel which protects the bowel from spillage.

Perhaps before you go ahead with the RT you could talk to the onco about brachytherapy which will reduce the risk of the side effects even more - or ask for a second opinion from a brachy specialist if your hospital doesn't offer it?

Fatigue is more likely to be a side effect of the hormones than the RT - in RT you can get a bit tired towards the end of the 4 or 7 weeks (depending which regime you are on) but that's usually all.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 29 Mar 2018 at 17:35

Thanks LynEyre - very interesting.

Learning lots here: will ask about the SpaceOar gel. Don't think the oncologist thought I'd be especially prone to incontinence - it just seemed that her view was that everyone would get it. I'd be very happy to prove her wrong.
Doing fine with the hormones - a bit of tiredness, but able to have an hour out on the bike most days. I'm reckoning that - if I do go for the RT - I want to be as physically fit as possible before it starts.

User
Posted 29 Mar 2018 at 17:38

Hi Rob,


I had RT/HT treatment last autumn.


When I had the MRI earlier I did find it a bit claustrophobic, but not claustrophobic at all having RT.


In RT you are in a fairly large room, on the table and the machine head rotates around you at a distance. You’re not enclosed at all. Check out some of the videos on YouTube, key in EBRT or similar. That may put your mind at rest.


Regarding side effects I had 1 instance of diarrhoea cured with the tablets that they gave me. Drink plenty of water and keep hydrated. I got a bit of cystitis one evening when I thought I would not drink that evening, soon resolved.


Like most people I got a bit tired towards the end of treatment, soon stopped when finished RT. Occasional small bit of blood on wiping, but that stopped 5 months post RT. Bit of soreness to the skin and bone on the belt line but that stopped about the same time.


You’re lucky to not have any HT side effects, I had quite a few, even asked if I could swap meds. Registrar told me ‘I didn’t quite realise how serious my illness was’, and I’m embarrassed now in hindsight that I even asked.


I had an hour trip there and back on the Tube (London) and that really was the worst bit.


Good luck, RT is a doddle so don’t worry about it. G

Edited by member 29 Mar 2018 at 17:44  | Reason: Not specified

User
Posted 29 Mar 2018 at 17:55

Thanks Rich12 and graham61

I can't do an MRI - tried it years ago when had back problems and had to be hauled out after 30 seconds.... CT scan is OK (as long as it's feet first). Bone scan was very unpleasant - had to keep my eyes shut the whole time. But good if the RT is very different - the blurb from the hospital mentioned claustrophobia and that spooked me. The hospital radiology dept does open evenings - I was wondering about going and having a look at the machines, but thought it might just get me on edge...

Very helpful to know the side effects can be quite mild - the blurb the radiologists dish out lists them all exhaustively, and in graphic detail, but without any indication of the probability of an individual getting each of them.

I was quite prepared for the HT to be difficult, but a bit of tiredness and not quite the same (ahem) 'quality' of erection as before. Otherwise fine.

User
Posted 29 Mar 2018 at 18:10

Originally Posted by: Online Community Member
I was quite prepared for the HT to be difficult, but a bit of tiredness and not quite the same (ahem) 'quality' of erection as before. Otherwise fine.


You get an erection, on Zoladex, that's just bragging !


Seriously tho' RT is even less claustrophobic than a CT scan, just had one.


I'm sure going to an open RT evening will put your mind to rest, which is important. 


They have to warn of all potential side effects to avoid any legal claims, which distorts reality.

Edited by member 29 Mar 2018 at 18:11  | Reason: Not specified

User
Posted 29 Mar 2018 at 19:10

One side effect you nay experience with both surgery and Combined HT/RT that is seldom mentioned is that you may experience a reduction in your penis size, despite working it which is important. But HT/RT of any type if not completely curative, delays the need for further down the line treatments in the future. There is no pain whilst having External Beam and with Brachytherapy the effects of planting seeds or insertion temporally of high dose probes are operations that are got over in a matter o days. Brachytherapy seems to be the most successful form of RT which is further improved by supplemental External Beam as part of the treatment. (However, Brachytherapy is not suitable for all men and not every hospital can provide it).

Barry
User
Posted 29 Mar 2018 at 19:27

Originally Posted by: Online Community Member


Originally Posted by: Online Community Member
I was quite prepared for the HT to be difficult, but a bit of tiredness and not quite the same (ahem) 'quality' of erection as before. Otherwise fine.


You get an erection, on Zoladex, that's just bragging !


Seriously tho' RT is even less claustrophobic than a CT scan, just had one.


I'm sure going to an open RT evening will put your mind to rest, which is important. 


They have to warn of all potential side effects to avoid any legal claims, which distorts reality.



 


I was a bit worried that meant the Zoladex wasn't working, but it's hammered the PSA, so seems to be doing what it's meant to.


Thanks everyone for the benefit of your experience and all the advice. Much appreciated.

User
Posted 29 Mar 2018 at 19:59

Lots of men can still get erections on HT - it is the libido that is usually killed, not the ability to get hard

Edited by member 29 Mar 2018 at 21:14  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 29 Mar 2018 at 20:26
I had 4 weeks of RT plus the HT. The machine at my hospital was one of the new one that manipulates the beam to better fit the cancer, called Trubeam. About 2 weeks in I started with morning diarrhoea and frequent peeing. No tiredness. The aforementioned symptoms carried on for 2 weeks after finishing RT but since then until 10 months after finishing I have been well and happy. I have now got what I believe to be radiation cystitis and have frequent and painful pees on average 4 times a night. With self treatment of 1.5 - 2 litres of drink a day including Cranberry juice, it’s easing but the hospital suggest a flexible cytoscopy to have a look at the bladder and urethra.

Incidentally, the RT machine rotated around me 45 seconds one way, then 45 seconds the other way. I asked why not 90 seconds in same direction. The radiologist said if it did that the wires round the back would get a bit twisted!!

User
Posted 29 Mar 2018 at 22:52

Possible similar analogy - Car steering wheels have what you cal a spiral cable. It is the same. As you rotate a steering wheel with an electrical connection it cannot rotate continuously in one direction. Does that explain it?

User
Posted 29 Mar 2018 at 22:57

Sorry = the steering wheel can rotate as it has a spiral cable - that is the design function! I think I've just made mortality a lot less frightening! xx

User
Posted 30 Mar 2018 at 12:26

Originally Posted by: Online Community Member
One side effect you may experience with both surgery and Combined HT/RT that is seldom mentioned is that you may experience a reduction in your penis size


Haven't heard/noticed of that with RT/HT, any one ?


When I was put on Tamsulosin I did notice better blood flow, 'at rest' down below, and better resistance to the effects of cold weather.

Edited by member 30 Mar 2018 at 13:34  | Reason: Not specified

User
Posted 30 Mar 2018 at 14:09

You are very lucky if it hasn't affected you - HT-induced atrophy is a very high % side effect -
- no testosterone leads to shrunken testicles,
- loss of libido leads to penile atrophy,
- lots of info on here from men who found that once HT finished, they got their libido back but could no longer get a large enough erection for penetration in common sexual positions
- a number of research papers on the lack of advice / support / clinics for men starting HT re maintaining penile health

It will depend on the HT - if you are only on bicalutimide, it does not apply to you.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 12 Apr 2018 at 19:19

Thanks guys for all your helpful advice and information. It's obviously important to go ahead with the RT - a lot of my fears have been calmed by getting things into proportion. Also talked to a mate who's a GP and has seen plenty of people with prostate cancer over 25 years or so. He was upbeat about the outlook - men where it's localised have a very good prospect indeed of doing well, and he was reassuring about the side-effects too. He reckoned that there have been big improvements in avoiding bowel-related side-effects and that the tiredness can be dealt with.
So 37 sessions of RT starting on May Day. Deep breath time...

User
Posted 24 Jun 2018 at 20:26
Finished the 37 RT sessions last week! Side effects have been slight - no tiredness and been out on my bike a lot and walking at weekends right through. Increased frequency of peeing, but specialist nurse advised paracetamol for that and it seemed to help: ended up getting up twice a night for a pee. Bowels have been a bit unreliable, with occasional diarrhoea, and lots of wind in the evenings, but nothing catastrophic. Consultant reckons things should get back to normal in a month or so. The RT just got very tedious towards the end - will be very good not to have to head up to the hospital at all this week.
PSA test in 8 weeks time and HT for another 2.5 years - the consultant thought nothing much will change till the HT stops and only then will it be possible to see the effect of the RT. Much looking forward to travel and holidays now.
The radiotherapists were really excellent - highly skilled and always cheerful and good humoured -they made the whole process bearable.

User
Posted 17 Aug 2018 at 12:37

Check-up this week, 8 weeks after the end of the RT. PSA now 0.2. Consultant very pleased with that and told me to go away and forget about it all for the next few years. 2.5 more years of HT, so things could change 12-18 months after that but for the moment everything looks fine.


Next PSA check in 4 months then, assuming that's OK, every 6 months - and results by phone so no need to see the hospital again for a long time, I hope. Seems like the RT has done its job - much relief.

User
Posted 17 Aug 2018 at 12:55
That's excellent news - delighted to hear that you're doing so well! Have all your RT symptoms subsided now?

Chris
User
Posted 17 Aug 2018 at 13:03

Excellent news.


Ian

User
Posted 17 Aug 2018 at 13:43

Chris, yes - RT side-effects have all disappeared. In the couple of weeks after the RT, I got a few minor skin issues - athlete's foot, a wart and patches of irritated skin on my legs - probably as a result of the RT sending the immune system haywire. All cleared up now (had the wart frozen off).


Peter

 
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