delaying radiotherapy

User

Posted 01 Nov 2024 at 12:39

I have posted on here before, but as this is now a rather different scenario, I am starting a new conversation.

I have locally advanced prostate cancer, have been on prostap3 since February, and should be starting radiotherapy soon. My situation has now changed and I wonder if anyone else had had this kind of thing to contend with.

About 2 or so months ago, I developed a right sided inguinal hernia, which was a recurrance of one I had repaired 35+ years ago. A couple of weeks ago I attend to see the oncologist, who was planning to begin radiotherapy soon. She is not however, happy to go ahead with this until the hernia repair has been done. She explained that radiotherapy can impact upon wound healing, so the only way to go ahead now was to never have the hernia repaired. This is not an option, it is quite big, getting worse, and is not easy to reduce sometimes. I am concerned about the risks of strangulation and having to have emergency surgery. The waiting list for the surgery is 3 months which is pretty good by NHS standards. I have looked into private surgery, and locally to me there is a waiting list also so probably not a great deal to be gained.

I think what I am asking here, are there any members of this community who have had to delay their radiotherapy, for maybe 6 months or so, and what, if any impact it had on their cancer. My diagnosis was early T3a no. This was in January, and no metastases were seen on a bone scan. I have few to no symptoms. My PSA was 5.3 and has now come down to 0.4 after 9 months on prostap. I am continuing on Prostap and the plan is to be on it for 2 years in total.

Love to hear any thoughts on all this.

User

Posted 01 Nov 2024 at 13:17

Doing more than 3 months on HT before RT is fine, providing your PSA is still dropping, so make sure you are getting PSA tests every 3 months (or more often). Some oncologists want 6 months on HT first anyway. It's also good to do at least 18 months HT after the RT, which might mean lengthening the total HT a little in your case.

User

Posted 01 Nov 2024 at 14:32

Thanks for that. It did occur to me that I may have to continue longer with the prostap, which is fine. Given that one of the options presented to me was to continue with the prostap for life and nothing else. Control rather than cure. The other, obviously the radiotherapy.

I am keen to have the radiotherapy despite the possible side effects. I agree that a good idea would be the psa's in the intervening time. They tell me I don't really need them now, but I have insisted anyway. A big drop came after the first 3 months of prostap from 5.3 to 0.5. Then I didn't have one, and then there was a small drop to 0.4 from my last one. I am going to the GP for the injections now, so they will both arrange and monitor it. I assume.

Urology have discharged me to GP and oncology, with a proviso I can self refer if I want/need to

User

Posted 01 Nov 2024 at 21:04

As Andy says, the majority of prostate cancers are testosterone dependent which means HT keeps them at bay. The results suggest it is working in your case.

Obviously radio will have to be delayed while the hernia is dealt with - and HT might have to be prolonged to match - but that shouldn't stop the eventual treatment dealing with your PC. You might find yourself waiting longer to recover from the hormone side effects though.

User

Posted 01 Nov 2024 at 21:23

You were diagnosed in Jan 2024 and if you wait until Jan 25 for the hernia op, it will probably be Feb before you get your radiotherapy. As others have said as long as the PSA doesn't start to increase the wait is not a problem.

Dave

User

Posted 02 Nov 2024 at 10:41

Thanks to all for taking the time to reply. I have now forwarded all the information to the radiotherapy team, and they are going to pass it along to the oncologist for her view.

I am hoping, keeping fingers crossed, that she might be able to communicate the need for this surgery to be fast tracked, but if there is no slot, then they can't knit one can they.

However, given that they were happy to give me the option of no radiotherapy at all, and just control it with injections, i find it hard to see how they'd think a few months delay might be seriously contraindicated. The most frustrating thing is the inability to plan due to the uncertainty of it all. We like our holidays, and already have one booked which we may or not be able to take. We dare not book any more just in case.

As far as the prostap goes, I am very fortunate I think to have had few bad symptoms from this. I get the occasional hot flush, but come and go quickly. Put a bit of weight on which will have to be addressed at some stage. Get more emotional, which for a bloke isn't really a bad thing. Otherwise, so far, nothing that concerns me.

User

Posted 02 Nov 2024 at 18:57

I was diagnosed Oct 2015 with locally advanced PCa, T3b, psa 21 gleason 8 (later upped to 9). Plan was 3 years Zoladex, with 37 sessions RT. I did have flow problems and onco suggested TURP before RT as that could make it worse. Ended up starting RT 1 Dec 2016, no issues, no problems. Obviously the ADT was doing what it should, I also had abiraterone, enzalutimide, steroids for 2yrs on trial.

Peter

User

Posted 15 Nov 2024 at 16:10

As a further update to this, my oncologist is most unhappy about this situation. Having given the radiotherapy team the news that they don't need to put a plan in place just now, as I am waiting for the surgeon to give me a date for the hernia surgery. Might not be until early next year. I also asked them if it would be possible to delay it until late May, if it turned out that the treatment would impinge into a holiday I have booked in early May. The radiotherapy team seemed cool about this

As already mentioned the oncologist is most unhappy with it. Her secretary called me, and although she didn't say this in so many words, I could tell from her voice that this is not at all satisfactory. She said they were going to write to the surgeon to see if he could expedite the surgery. My daughter is a GP secretary and she laughed when she heard this. She said she hoped they would e-mail and not send an actual letter in the post!! But at the same time, told me in no uncertain terms that the radiotherapy is more important than the holiday, that she and her husband are also booked for.

I began my Prostap 3 in February this year. The protocol of the hospital I attend is that radiotherapy takes place 6-9 months after this. Which is where I am now. So following on from this, is anyone who has/had T3a NO MO disease gleason 4+5 (what they call high risk), PSA now 0.4, delayed their radiotherapy beyond the 9 months period. The hernia situation can't be helped, we all know this. The holiday of course can be cancelled if worse came to worse, even though it means losing some money. My daughter is very adamant, my health comes first and there will always be another holiday. I get that, of course I do, but I'd love to be able to find some good quality research that can show how risky it actually is to delay the radiotherapy. My wife is getting pretty twitchy about delaying it for the hernia, but that has to be no matter what. So far, I've had no luck. If anyone can help with this also I'd be grateful.

User

Posted 15 Nov 2024 at 17:12

Hi,

Sorry but I have to be the contradictory one on this. If it was me I'm petty sure I'd want the RT and put up with anything else and not have a holiday. It may be neurotic, but a hernia is an inconvenience and a holiday a frivolity whereas Prostate Cancer can be much more serious. As Bill Shankly didn't say.

That they say they'll control it with injections means they're not looking for a long term remedy so RT is a plus as presumably it's for a possible cure and longer term solution.

Granted that some people say it's slow moving etc and are more risk tolerant and perhaps some might say more rational but I'd always weigh up the biggest downside.

All the best, Peter

User

Posted 15 Nov 2024 at 17:49

I would disagree that a holiday is a frivolity. It's one of those activities that gives quality of life. Quality of life at the age of 77 is important. Long life without quality is no life. However, I would agree that this particular holiday can be cancelled, and if necessary will be, as per daughter's very vociferous instructions. And oncologist's concerns.

The hernia is NOT an inconvenience. This a large inguinal hernia from a failed repair done about 35 years ago. It is painful, impinges again on quality of life, and is at risk of strangulation. Therefore the repair is necessary before the radiotherapy, due to RT impairing on healing, not just now but for a considerable length of time. Probably more time than I have. Strangulated hernia is emergency surgery, infinitely more risky than planned surgery.

Imagine a scenario in the future. Hernia strangulates, emergency surgery under GA which is a bad thing for me due to other medical conditions. Poor or no healing, risk of infection etc. So where is the quality of life there. Or maybe loss of life. So die from the more likely hernia risks rather than the possible prostate risks. Sometimes one risk has to be played against another. The oncologist is willing to take the risk of waiting for the hernia surgery, whilst at the same time trying to expedite it. She is clearly not, however, willing to have me take the risk of delaying further to take a holiday. And for that I can't blame her, she is after all wanting the best outcome too.

User

Posted 15 Nov 2024 at 18:18

Know i've commented before - I was T3b N0M0 gleason 8 on diagnosis upped to 9 after a TURP. I started on HT right away. The RT was delayed until the TURP carried out as RT likely to make urine flow worse. I ended up having the RT 12 months after diagnosis, with full agreement of oncologist, the Zoladex doing its job (also had abiraterone, enzalutimide, prednisolone on trial).

I developed an inguinal hernia couple of yeas ago, fixed a year ago, it caused me a lot of pain and stopped me doing a lot of things fairly often, at times couldn't push the thing back to where it belonged, wouldnt have minded if just uncomfortable but was very painful.

Peter

User

Posted 15 Nov 2024 at 18:39

John,

At 77, a quality of life holiday which could be your last free without concern or dealings of side effects is absolutely a major consideration. Forgetting cancer, we all can be gone in an instant. Having that opportunity is huge especially in light of one consideration your Radiation team was saying it was fine to wait. I knew I had my cancer and the Surgeon was saying he did not think it was a good idea to hold off on it and the soonest available appointment was best. Well his soonest available put it in late June while our daughter was home for summer college break. I said no I am fine for in my case 6 weeks longer and went until mid August three days after returning our daughter to college. I was going to have a quality of life summer with our daughter not knowing how things could pan out.

User

Posted 15 Nov 2024 at 20:18

It's very interesting to read all the different perspectives on this. Having mentioned before that my daughter is very keen that I do the radiotherapy as soon as feasibly possible, deal with the holiday situation later, I don't think perhaps she, and maybe me neither are considering the effect possible side effects may have on life in the future.

From this being a very difficult decision, i.e. delay and go on holiday, to an easier one, i.e. delay just as long as is necessary and get the radiotherapy as soon as possible, to another difficult one, consider the implications of the side effects and its effect on life/holidays etc. I think I am possibly a little in denial about the side effects, I tend to always look on the positive side and think that either I won't have them, or they won't be too bad, which is maybe not very rational.

Having done nothing but mull this over for the past few weeks, and coming up with a different decision every time, I wonder if I should try to get another appointment with the oncology team, and have a proper discussion about the risks of delaying, and how much different a few weeks will make. At the time of my last oncology appointment I think they believed the hernia surgery would be done pretty quickly, but the surgeon, correctly does not consider it to be an emergency. Waiting for 10-12 weeks, considering how the NHS is currently, seems to be a pretty short wait, but maybe not so much for a person needing cancer treatment.

User

Posted 15 Nov 2024 at 20:18

Just a thought is the impact on healing the same if you have 5 sessions of SABR? Would have thought given the accuracy of this it might be possible to do both??

User

Posted 16 Nov 2024 at 02:32

There is never any harm in asking but I see you mention 37 fractions of RT so not even the 20 fraction alternative that hes generally come to replace it.

Even with all the scans and tests to hand, one can never be certain how PCa will develop but the chances are that as you are already on HT if your PSA remains stable your RT could be delayed to enable your hernia op to precede it if there is not an undue delay in doing the surgery.

When I was diagnosed in 2007, HT was typically given for 3 months prior to RT. Also, some RadioOncologistts wanted PSA to fall to a certain level before administering RT. Around this time studies found that results were improved if the HT period was increased from 3 to 6 months. For reasons that are not relevant, I could not have my RT before being on HT for 8 months. I contacted my Oncologist at the Royal Marsden and he told me in writing that the extra 2 months "would do no harm at all". But that was applicable to me. It would have been interesting to learn whether this pre RT period of HT could have been further extended but the situation did not call for a greater extension.

A more detailed talk with your Oncologist would seem to be a sensible thing to have.

Barry

User

Posted 16 Nov 2024 at 22:07

It is worth checking with your consultant, but for the vast majority of cancers HT stops them progressing so nothing problematic will result by spending longer on it before having RT. If resolving the hernia and having a great family holiday is then possible, the longer HT side effects may be worth it.

The RT is intended to be curative, so you can come off HT eventually, but it has its own side effects.

User

Posted 16 Nov 2024 at 23:37

Hi John,

That's good push-back on my post.

Your hernia sounds worse than I thought and after doing a little research there seems to be a specific reason not to do surgery while you have Inguinal hernia, in the case below it can damage the intestine from what I make of it.

Frivolity might have been a bit strong although to me it would be ensuring the holiday fits between treatment and doesn't delay it. That happened to me on a booked holiday.

The short search found this case which might be different than yours. I haven't read it in any depth.

.......................................................................................................

Ref https://pmc.ncbi.nlm.nih.gov/articles/PMC7752598/

'A 76‐year‐old patient with intermediate‐risk prostate cancer was referred to our radiation oncology unit for definitive treatment after androgen deprivation therapy for 8 months. Magnetic resonance imaging revealed bilateral inguinal hernias anterior to the prostate (Figure 1). To avoid radiation exposure to the hernia contents, we prioritized hernia repair surgery over radiotherapy with continuing androgen deprivation therapy. Three‐dimensional conformal radiotherapy (3DCRT) was initiated 1 month after surgery (Figure 2), which was completed successfully.'

................................................................................................

The search came up with some cancers where they do RT before surgery so it is possible in some cases.

Anyway I won't go on as it sounds like you have enough voices in your head. Good luck. Regards Peter

User

Posted 31 Dec 2024 at 14:54

Peter 2016

Thanks for the link, I had in fact read this, my grand daughter found it for me. It applies to me, but not for the reasons in the article. I am not having photon radiotherapy, but the oncologist said that the potential issue with radiotherapy first, and surgery after is the affect it has on healing rather than the hernia being in the radiotherapy beam. The hernia is a recurrent one, and as such (evidently), is a bit more complex than a new hernia.

I have now got a date for this, but just at the moment, I can't find out how long after the surgery the radiotherapy can take place. ASAP as far as the radiologists are concerned but I guess the issues around healing apply here also. Oh well, onwards and upwards, the very least I can say is that all should be done and dusted before the summer.

User

Posted 31 Dec 2024 at 15:01

Hi John, May it work out well. Your family is giving good support. Peter

User

Posted 31 Dec 2024 at 16:19

Thank you for that. Yes the family are very supportive. My grand daughter, now she knows the surgery is to be quite soon has banned me from going out meeting people, or seeing her little girl in case he picks up some bug or other that she's brought from nursery. She has given strict instructions, must not do anything to jeopardise this surgery. !!

User

Posted 09 Feb 2025 at 15:03

I am on here now updating my situation, as you have all been so kind as to help with your comments.

I am now planned for radiotherapy - yaaay. Have had the planning ct, just an mri to go, and the sessions start on 27th February, 20 sessions in all. I had my hernia surgery on 16th January, and have made an amazing recovery from this. The oncologist was pleased and gave the go ahead to start the treatment.

One thing I am a little confused about is the time of arrival at the hospital. My RT treatment is at 9.10, every day the same fortunately, but I have been given a time to pass urine and start drinking which is 45 minutes before. I am very fortunate in that I am eligible for patient transport, and my grand daughter is a planner for this!! I was a bit uncertain that I might be getting preferential treatment because of her, but no, everyone in my situation is automatically entitled to it.

I have to give her the details for the planning now. Any of you on here that has gone through this, would you recommend that they plan to have me at the hospital for the earlier drink time, rather than the RT time. I can easily drink on route, but am a little nervous of traffic interfering, or some other unforseen situation preventing me getting there in time.

I am getting a bit panicky now I think, more to do with making sure all the elements of the treatment are in place than the actual treatment. I did notice when I was there for the planning ct, several men sitting in the waiting room with their little drink bottles and waiting, but a couple just turned up with a bottle in hand and went straight through. They could have been sitting elsewhere of course I guess. And then there is all the bowel emptying as well, getting that right. It's very complicated isn't it.

anyway, if anyone has anything to tell me that will help me get this all straight in my head I'd appreciate it. I find to have advice for people who have been through it is more valuable than advice even from the hospital staff.

User

Posted 09 Feb 2025 at 18:38

Hi John,

No need to panic, the staff are excellent.

I had SRT a couple of years ago and the procedure then was to turn up and wait, they would then ask me to empty my bladder and start taking on water. Having said that, the procedure may differ at your treatment centre.

I think that using patient transport adds another dimension. There may be additional delays while you wait for the transport so it might be worth considering a book to read and a snack. Also, as your treatment progresses, you may need a toilet stop on your way home.

Last year I gave my mate a lift for his radiotherapy treatment, and while I sat outside I often observed several people waiting some time for their transport home. It was a busy site on the outskirts of London.

Good luck,

Kev.

Edited by member 09 Feb 2025 at 18:43 | Reason: Typo

User

Posted 09 Feb 2025 at 19:23

Hi John

i had a course of 20 sessions of RT in June - July 2024. The idea is that you drink a volume of water which they should have told you at the planning scan at least 45 mins before your RT treatment as a full bladder state is required for RT scan. That timing is crucial as it takes about that time for water drunk to seep into the bladder. The rationale is that a full bladder pushes the bladder away from zapping by the RT beams thus protective. They may have asked you also to empty your bowel an hour before RT treatment - to protect the bowel from zapping.

The folks you see drinking are either being told to drink more water after when they got onto RT scan, their bladder checked and found to be below safe level of fullness. They could also be drinking their water there and wait 45 mins before their RT time.

Expect to need wee very urgently by the time your RT zapping finishes (my zapping took less than 3mins once it starts). I came close to wetting on the scanner and had 2 accidents in the changing room. The nurses and assistants were very understanding as they see accidents! RT does that to you from after 2-4 sessions. It affects the bowel in the same way too! Piece of advice, have a wee before you get in car for home and be prepared to stop on way. I bought a wee flask from Amazon and put on men’s pad lol!

Good luck, you’ll be fine and the sessions goes quickly! Eddie

User

Posted 10 Feb 2025 at 07:10

John , you could try practicing the timing at home. Drink the amount of water you have told to drink at 45 minutes before your appointment time. See if you can hold it for and hour ,the extra fifteen minutes allows for time on the table. Get a urine bottle so you can measure how much urine is in the bladder. The next day repeat the same but see how much urine you have after 45 minutes,the time you go on the table.

Thousands of guys have been through the same thing the hospital will look after you. I was told I could use a urine bottle in the treatment room if desperate. I only had to drink twenty minutes before the treatment time and that was hard to do, but I got through it. You may find your urgency and timing alter as the treatment progresses.

Thanks Chris

User

Posted 10 Feb 2025 at 18:36

I had 37 sessions of RT as primary treatment plus ADT. As has been mentioned different hospjtals have slightly different procedures re full bladder/empty bowel etc (position of the cancer could have a bearing as well). I had my RT at Clatterbridge, Wirral and I got to the hospital (less than 10min drive) used the mini enema etc and when 'finished' went to waiting area. When it was obvious I'd be on table in 20mins or so the staff would check I'd done 1st part (enema) and told to drink 3 cups of water. This meant didnt have to worry about when to drink water etc.

Peter

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