Is there anyone who can help with my husband’s radiotherapy decision please

Hello Goggie  I fully understand you and your husbands issues and being put into the situation where you have to decide isn't good.

On a personal note I am a Gleason 9 (5+4) T3aN0M0 initial PSA 182. With my initial PSA and a "dodgy" MRI scan - it had a black area near the prostate the urologist didn't give me a choice and it was HT/RT (no offer of surgery). Because my Prostate had grown I ended up with a catheter for 10 months and until the TURP operation was unable to have Radiotherapy.

Almost a year later when I was passed to Oncology the Consultant agreed that the black mass could be a spread to my lymph nodes but doubted it. Rather than do another MRI she said "We will zap the lymph nodes as well as the Prostate with the RT" (I was at The Christie a specialist cancer trust in Manchester).

Just over a year on - I am fine - just the usual fatigue and the odd bowel issue during Radiotherapy - nothing now - although who can say what the future holds. You can read my entire journey by clicking an my avatar.

I hope this helps - if you want to know anything else feel free to ask.

Best wishes

Hi Goggie

I don't think giving RT to nodes normally causes major issues but possibly more difficult if surgery already done as in your case.

In theory it is still curable so probably worth going for, your specialist sounds a bit negative which doesn't help.

Hopefully someone will post who has had the surgery followed by salvage RT.

All the best

Steve 

Goggie,  I had RT (74gy) on prostate and lymph nodes but didn’t have surgery.  My RT has left me with some radiation damage but absolutely nothing I can’t handle.  I suspect that this is all a game of chance, treatments and side effects work differently on all of us and there isn’t a ‘right’ choice.  Personally I took my oncologists recommendation at each stage and I am here 6 years on, still living well.  I am sure others will add to the posts but I know you will make the best choice for yourself.  Stay positive and good luck.  David

Thank you as always for your most positive reply … Which I have relaid to my husband .. he has an appointment with radiotherapy today to discuss procedures.. I would like him to talk to our in- hospital assigned oncology nurse to get some help … but that is soooo difficult as they are busy and rarely respond 

Thank you again and keep well 

Thank you so much for your reply .. He is going to ask if the side effects are different if you have had a prostectomy 

maybes as you say someone in this situation make come forward 

Thake care and stay well 

Thank you Steve 

it does help to hear others thoughts 

He has a start off meeting today and has gone with our daughter 

I have been called for jury duty so am unable for the first time not to be with him 

I hope he comes back a bit more convinced .. Thing is our oncologist dosnt paint a great picture for him for success in fact he he said “ most likely to fail “ which makes the side effects more of a problem if he goes ahead … and it apparently will fail … 

We all want him to take the chance and try for cure no matter how small the odds 

But it is not great for your mental heath having to make all these decisions 

keep well and stay well 

Christine 

'most likely to fail' doesn't help confidence, unless something he's not telling u, cos normally  in nodes still potentially curable perhaps the meeting today may help

best wishes

Steve

Hi Goggie,

It's a difficult one because everyone is different. Personally, if it was me I would say consider going for it. The reasoning is that you are still in a possible curative zone? maybe, and RT is a lot better than it was years ago, it's very exact and precise now. My partner had extensive RT to the whole pelvic area. He did have a SpaceOar (gel cushion) to protect his rectum, but that was just in a small area where the prostate was touching. Everywhere else was zapped plus nodes and they travelled up his lower ribcage as well.. By the sounds of it they covered a very large area. It did take him a few months to fully recover, but he is fine now and back to where he was fitness wise. No extra problems than he already had. Maybe a slight urgency to get to the toilet, but he does have IBS so hard to tell if that has aggravated it more. Both his seminal vesicles were originally  invaded, but there was no real sign of it in his nodes or anywhere else, but he had been taking a very strong mix of hormone treatment beforehand so that could of shrunk things back. Because his PSA was high originally (over 100) that does statistically point to metastatic spread even if it's not fully visible. So theres a lot of variables in the mix. I think at this stage you just have to make a judgment call on where you are, I think theres no real exact answer, that's why your consultant is vague. Also age is a consideration as my partner was 56 and quite fit when he had RT. I'm guessing age and fitness will affect recovery. All in all knowing the quality and precision of RT I would say go for it because it really does kill off those cancer cells. 

Best wishes and let us know what path you take.

L

There are some useful PCRI videos on this topic such as:

Thank you L 

my husband is going to go forward with the treatment starting 14th March 

Hes still very worried 

But he knows it’s the right thing to do and at least he is lucky to have the option whatever the outcome 

thank u to you and everyone who has replied 

This is a great forum and a massive help to everyone who has found themselves in this position 

xxx