So many treatments / choices. HELP

User

Posted 31 Oct 2023 at 13:55

OK, so I have already posted a query about going onto HT for 6 months prior to commencing HDR Brachy boost therapy. My reasons for this was because I am due to go oversease for 2 months at the end of March next year (2024) and I really didnt want to have any major Side Effects from both the RT and the HT combined.

My RO's response to this was to assure me that it would be very rare to have any SE's with the RT and in fact many of his patients had travelled days after finishing their RT program. He wasnt opposed to my plan but felt it wasnt necessary to delay the RT because of the intended trip.

So I have some questions;

1: Given that the RT could start in Dec for 4 weeks, what could be the worse delayed side effects I "could" experience in April/May from that treatment. Keep in mind that my travel insurance policy will not cover me for any pre-existent illnesses. From all your combined experiences, is my RO correct in saying "I will be ok"?

2: I have seen some evidence that SpaceOAR gel could be a disadvantage to GS8 suffereres because it has the potential to trap some unknown cancer cells outside the prostate and therefore they miss out on the RT. However my RO has said they do not use SpaceOAR. They now use Barrier gel (I guess that is its brand name) which is a far superior product. Thoughts?

3: My RO said that there is another way of moving forward with my treatment rather than HDR Brachy boost and that is EBRT with SIB (Simultaneous intergrated boost) - Any thoughts on this?

From July onwards next year I will be free of all commitments and retired and so will be able to deal with all the SE of HT and RT. As you can see I'm simply trying to make the right and balanced decision that will give me the ultimate outcomes.

Thanks to all who can come back with any advice with the above.

User

Posted 31 Oct 2023 at 13:55

So I have some questions;

3: My RO said that there is another way of moving forward with my treatment rather than HDR Brachy boost and that is EBRT with SIB (Simultaneous intergrated boost) - Any thoughts on this?

Thanks to all who can come back with any advice with the above.

User

Posted 02 Nov 2023 at 18:43

Yes all with complete agreementwith oncologist. Initial delay was that it was suggested a TURP (part of prostate cut away to help with urine flow. My flow wasnt great and RT would have made it worse). That op happened in May 2016 so that was just over 6 months from when started HT. Got over the op then I was getting married Oct 2016 so onco actually suggested putting RT off until 1 Nov 16, I didnt ask for it (think i'd have preferred to put wedding off!). Obviously, the HT (Zoladex) wasworking well so no problem.
I did suffer most of the side effects from HT (on enzalutimide and abiraterone as well as part of trial) with 'good' hot flushes, aches/pains, depression, fatigue, lack of libido etc but must admit that although obviously i'd rather not have had the side effects the treatment all worked (to date obviously) so no complaints.
I was T3b gleason 4/4, psa 21 on diagnosis aged 59,slight spread to seminals. Gleason upped to 9 after TURP. All the effects have gone tho still carrying a little bit too much weight (i did put on a lot of weight with the HT despite keeping as active as possible).
Peter

As an 'aside' relating to my wedding referred to above- its my 2nd marriage & altho I didnt live with my now wife then I obv stayed there from time to time. I started the Zoladex end Oct 2015 & the trial enzalutimide/abiraterone etc shortly after. As it happened Feb 2016 was a leap year so come 28 Feb at 7am, me still in bed still more than half asleep, effects of HT 'dulling' things she asked me to marry her I said suppose so and went back to sleep!! Talk about taking advantage!

Edited by member 02 Nov 2023 at 19:23 | Reason: Not specified

User

Posted 03 Nov 2023 at 18:23

MS58 yes living a normal (married) life, effects all disappeared long ago tho did take a while after HT finished but I knew it would take a while. The cancer situation still good, on annual PSA tests (next week as it happens). Keeping as active as I want to rather than being restricted by treatment effects, tho ageing doesnt help.

Peter

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User

Posted 31 Oct 2023 at 20:54

In the previous thread we were assuming you would have six months HT starting in October and your RT would be in the middle of your holiday. If the RT is in December and you have another three months until the holiday I can't see a problem.

I needed a catheter for a week after HDR brachytherapy. It was no problem, but a tiny bit of evidence that not everything goes exactly to plan. I agree that it is unlikely you would have any side effect more than a week or two after RT that would effect your holiday (I can't think of any side effects inside a week or two either, but I'm cautious). Some people have problems in the rectum, the barrier gel may make that a very remote probability.

I have never heard of SIB, in my case I had the HDR followed by EBRT, I think others had EBRT followed by HDR, I assume SIB is HDR in the middle of EBRT (I could be wrong) I can't see that the timing of HDR vs EBRT would make any significant difference, as long as they were not too far apart.

If the RO is happy to use barrier gel, then take his advice. He has seen all your scans.

I would not be worried about the travel insurance, the chances of side effects are slim and the chance of cancer progression to the point of needing to fly home are slim.

Dave

User

Posted 31 Oct 2023 at 21:07

I’d want my husband to prioritise his health and treatment over travel.

Could you not follow your doctors advice who has seen your scans etc, and is offering the treatment he believes is in your best long term interest, and delay travel if necessary though hopefully it won’t be.

User

Posted 31 Oct 2023 at 21:10

Thanks Dave, You are always quick to reply with some great info. So my main concern is that from what I have read the SE's for RT can start kicking in after 3 - 6 months and can include urinary issues, rectal problems etc. And so that is what I am more worried about. If I get the RT in Dec, will these issues raise their ugly heads while driving around in remote Turkey!!

I'm thinking that I should just go with the HT and 6 months later after the trip get the RT.

User

Posted 31 Oct 2023 at 21:16

Yes but herein is the quandary. My RO isn't really worried about the 6-month delay between HT and RT. In fact, some data suggests that starting HT 3-6 months prior to RT is actually a good thing. My RO is just giving me options to think about and that is what I'm doing. It seems that a number of fellow PCa sufferers delayed RT for a period of time while on HT, in fact I recall one who waited 12 months before starting RT and all seemed to go well.

Don't worry my wife is carefully monitoring this decision-making very astutely.

Edited by member 31 Oct 2023 at 21:17 | Reason: Not specified

User

Posted 31 Oct 2023 at 21:27

Also Dave, I just noticed that I had put my country as being the UK. I'm actually from Australia. I have no idea why I put the UK down ... brain fade. Therefore maybe you guys are not doing SIB (Simultaneous integrated boost) -

I must admit I haven't heard of it before either but my RO suggested it as an option.

User

Posted 31 Oct 2023 at 22:25

I had 20 sessions of EBRT. About two months after completing the course I started to get bowel problems due to radiation damage to my rectum. Basically I would, with hardly any warning, be hit with a very urgent need to go. So urgent it was near impossible to hold it in and I was to experience several unpleasant accidents over the following months. Walking the dog became rather a tense affair! This is just my experience of course, there are probably many other guys that had the same treatment that didn't experience any such problems, and you may be the same.

User

Posted 31 Oct 2023 at 23:25

I actually think it’s impossible to say what SEs you might get as everyone is different. Unlike Bean121, I am 6 months since finishing RT and have had no noticeable side effects (to date) except incredibly loud farts!(dry thankfully😮‍💨) HT in the other hand has been grim for me, I’ve had just about every side effects imaginable and it’s having a serious affect on my QOL😟

User

Posted 01 Nov 2023 at 18:26

I had 37 sessions of RT (prostate and pelvis) and like Bean above suffered from bowel problems about 2-3 months after completing the RT, a few times actually had 'accidents' whilst out despite thinking I'd emptied bowels prior to going out, nothing I could do to hold it in. It did put me off going out for a while but Immodium did help. Yes I had RT after being on HT for 12 months and all seems ok some 5 yrs aftervfinishing treatment.

Peter

User

Posted 01 Nov 2023 at 22:45

Thank you for your reply Peter. That is exactly why I'm going to put off my RT until June next year, but will start HT next month. How did you cope with your HT for the 12 months leading up to your RT and why did you wait that length of time before your RT? Was your RO in agreeance with that approach?

Actually, your reply really came at the right time as I was just about to chat with my RO. He's ok with my decision but thinks I may be overly worrying about the 2- 3 month issues that can occur after RT. As I will be in Turkey in March and April, those issues would not be ideal while navigating around in a place that doesn't have a lot of public toilets.

Glad to hear you're going ok. how is your QOL now?

User

Posted 02 Nov 2023 at 07:36

I maybe should have added that I only had 20 sessions of RT. The plan was to have 39 sessions but the CT planning scan showed there was too much risk to the bowel, part of which was in the way. So, had I been given 39 sessions I may have had permanent bowel side effects. I’m glad the Onco spotted it but now of course I have to live with the fact that I was not able to have the most effect treatment for me, so fingers crossed🤞

Edited by member 02 Nov 2023 at 07:37 | Reason: Not specified

User

Posted 02 Nov 2023 at 12:58

Yes I do hope all will be ok with what treatment you had. Thanks for your reply.

User

Posted 02 Nov 2023 at 14:39

Thanks Bean - Your experience has indeed made me feel even more comfortable to defer my RT until I'm back from overseas. As mentioned, being in the countryside of Turkey where public toilets are at a premium would not be a pleasant place to be with the advent of potential bowel issues due to RT.

Thanks for sharing. I hope you are good now.

User

Posted 02 Nov 2023 at 18:43

Edited by member 02 Nov 2023 at 19:23 | Reason: Not specified

User

Posted 02 Nov 2023 at 22:05

Peterco, great story!

And congratulations.

User

Posted 03 Nov 2023 at 00:14

Thanks Pete, yes a good explanation of your circumstances and also of the wedding proposal. Very funny!!

I assume that you now live a pretty normal life, no after-effects from your treatment and all going well?

Thanks again for your reply.

User

Posted 03 Nov 2023 at 18:23

Peter

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