Radiotherapy long term side effects

Hi Guern

I think that the latest Radiotherapy is really very good. I don't read on here of many people having issues with RT.

I finished RT in 2017 and 7 years later have no problems regarding the RT.

Probably the HT causes more issues but these tend to go away when HT over.

There is something called Space oar which can help prevent damage which may be useful in your case as u mention close to the rectum wall.

Hopefully others will come on with their experience 

All the best

Steve

Hi

I had RT 18 months ago and have another year to go on HT.

The only LT side effect I have had so far is damage to the bowel cell wall (prositus). This causes blood in my stools and sometimes "wet farts" blood and mucus. This isn't very pleasant but manageable.  I spoke with my urologist a couple of weeks ago about ED and he said this is a direct result of RT and or HT...so that may be a LT side effect...I also discussed my need to get up for a wee in the middle of night numerous times and again he said the could be damage from Radiotherapy?.

Thanks both, good to have current facts to hand. I've heard of the spacer that Steve mentioned so will be asking about it and the ED, yep sort of there already....

Hi Guern017, when we were looking into the Space Oar about 2 years ago it had not been approved for NHS use. It could only be available privately unless for ongoing research. Things might have changed! However, the cost has increased substantially, I am told, to about £5000 locally to us (East Midlands). I also looked up results and although, then, there was evidence that the bowel was protected, there did seem to be a higher incidence of urinary problems. It also involves having a General anaesthetic.

As I said, this is some 2 years ago and things change rapidly but perhaps worth doing some up to date research of your own? 

Nevertheless, I still wanted my husband to have the Space Oar and he declined! His only bowel problems were bloating during the RT. Now, though, he is more prone to both flatulence and constipation. This could be age related or RT related or both?

HTH

Hello Guern017 

A belated warm welcome to the Macmillan Online Prostate Community.

Radiotherapy is very good these days and well targeted. I can appreciate your concerns - during my 20 fractions I often wondered how it would affect me - seeing the staff scuttle off behind a lead lined wall!!

I am 21 months post Radiotherapy and can honestly say I don't think I have any long lasting side effects and the team who did mine were very professional.

Attached is a link to the NHS guide to Radiotherapy side effects (you may have already seen this)

https://www.nhs.uk/conditions/radiotherapy/side-effects/

I am aware we do have some community members who do have some long term side effects and they may well post something at a later date.

I wish you well with your treatment - as a Community we are always here for you.

Best wishes - Brian.

Thanks again Worried wife and Millibob.  Any info I can look at or personal stories i can pick up before I see the consultant on Friday will give me info I can base my questions on.  I have to come clean at this point.  I work as a Macmillan Benefits advisor, so see people after their initial diagnosis and whilst going through treatment a lot of the time.  I think I understand a lot of the side effects of treatments for lots of different cancers, I hear the same issues time and again, but there are so many swirling around in my head, I need to sift out the ones that may possibly be ones I'll come up against and try to focus on them.  Incontinence 10 years down the line?  I've no idea because I don't see people anywhere near that late in treatment, hence the question!

Hello Guern017 

Incontinence is one of those questions. We are all different, I joined this club because I couldn't go and was retaining urine (click on my avatar for the full story).

After I "lost" my catheter I had to learn to wee again - from every 30 minutes, now I am ever 3/4 hours, but still get up 2 or 3 times in the night and still like to know where there is a toilet - is this the cancer or old age? - I am 69!!

All treatments have their advantages and disadvantages but to me after almost 3 years on HT/RT if asked - would you go through it again - the answer would be a YES!!.

Best wishes - Brian.

Hello and welcome Guern017 .

As WW says, there is the Spaceoar Hydrogel which I believe reduces the amount of radiation to the rectum by about 70%. It has been approved by NICE now but it is still not widely available so if you want to push for it you may have to travel. Also, because I believe it is administered under a light general you need to be assessed to be fit enough for it.

There are different types of radiotherapy so make sure that you understand the pros and cons of each type, the machines used and the expertise of the radio oncologist with this particular procedure.

Finally, my husband had 33 sessions of EBRT to the whole of the pelvic area starting in August 2020. As for long term effects on the bowels and bladder there are little signs of anything at the moment. He does get up for a wee once a night (but he is 81) and he does have a problem with constipation at times but this is attributed to long term hormone therapy.

I think you will find a range of experiences but normally people are inclined to report the negatives rather than the positives - human nature.

Hi Guern017 ,

I am not qualified to give personal information because I am still awaiting my radiotherapy.

The video on the link below has reassured me quite a bit, because it is relatively plain speaking but also re-assuring.

https://youtu.be/i8Hsog9gBJI?si=pKHlp6lsPjM0BWnc

The information given has to be matched against your research and information supplied by others here, but the main thrust, that things have moved on substaintially over the last years, and long sterm side effects are relatively rare is comforting.

He does suggest that Space Oar is a consideration (either in this video or an other I have watched - I didn't check whilst writing this), but the idea that stuck in my mind was that if it reduced your risk of long-term side effects from 3% to 1% then it's worth it if your insurance covered it - this is an American organisation.

My own oncologist was unenthused in my case. She pointed out that:

1. That they were really careful when aiming the radiation.
2. That, in my case, because they are going to irradiate two lymph nodes as well (one because maybe there is a problem and the other, apparently, because well, why not?) that they will be aiming through an area not protected by the Space Oar.
3. That it is inserted by an operation under general anaesthetic, which carries its own risk, so why incur that risk for almost no benefit.

Steve

• Once again, thanks Brian and Steve for the links that were very informative. Everyone else has given good insights and I have more information and insight now than I had three days ago, both technical and more importantly personal.  Thank you all.  Peter