New to the group - Also have Colitis

Hello Finders2dab77 

That's an interesting question you ask and I can't think of anyone on the group with a similar issue (although I have been wrong before).

Radiotherapy has come on in leaps and bounds in the last few years so I would anticipate if you are booked in for Radiotherapy there will be a "planning scan". At this point any problems can be identified and if possible worked around. 

One example of this is "SpaceOAR" this is a gel inserted before Radiotherapy to protect the urinary, sexual and bowel functions during the process. Although the NHS don't routinely offer this I have come across it being provided when it's been essential.

My suggestion is to have a chat with your team before radiotherapy is ruled out - I am sure they have come across this issue before.

Best wishes - Brian.

Thank you for the reply and the support it’s still early days so trying to stay positive . Just so many questions and I now have a note book to write them all down in so I don’t forget. 

Good Morning Finders2dab77 

I set off with a note book and recorded every contact, names, e-mail, telephone numbers etc and boy has that come in useful during my journey. 4 years down the line I now have an A4 lever arch file and that's pretty full now.

It helps us to help you if you fill in some details on your profile (you can read mine by clicking on my name or avatar). To do this on your home page click on the chair - top right, then "profile" then "edit". Once you have written something don't forget to save it.

Please do keep us posted as to your progress.

Best wishes - Brian.

Hi Brian.

Updated my profile so thanks for that reminder. Has a PET CR Scan yesterday now feeling groggy and a little sick. Also pain in the groin and upper thigh area, but I don’t think this is the PC?

Starting back on Bicalutamide then hormone connections filled by radio therapy. My PAS score was 74.3 two weeks ago and have my first hormone injection on 17th. 

Not sleeping to well about six hours but feeling a little more positive/hopefull, yes down moments but my doctor says it has spread at low levels to my pelvis. He is talking about a possible cure or certainly “manageable “ . Still scared at times but trying to look at the positives. 
NHS has been incredible so far can’t fault them just need to know what the plan is so I can get on with mode as I have a new job to start January.

sorry my Gleason score was +4 +5

Hi Finders2dab77 , after updating your profile, did you save it?

I was PSA 74 and Gleason 9 at the start.  Please ask any questions and good luck with the treatment.

Hi David.

Hi Finders2dab77 , thanks for adding your profile.  You can view others by just clicking on their name or avatar.  You can update your own profile and I now keep my one going with all results and treatments and I find that useful.  Good luck with your results and please feel free to ask questions.

We have a contact who has Chrones disease and was told that radiotherapy (RT) was too risky.He then had a colonoscopy and given all clear for RT which happened with no problems - as far as I know.

The Space Oar is available privately at, I think, a cost of about £5 k depending on where you live. The reason NICE did not recommend it for NHS use (when I was researching it 3. years ago) was because there was insufficient evidence for its use with men with bowel disease such as colitis, Crones etc. Perhaps there is more ongoing research you can tap into and get the Space Oar on a free trial? 

one thing I did note at the time, there did seem to be ( if I interpreted the figures correctly) a slightly higher risk of urinary problems if the Space Oar was used. Something to check up on if you decide to go down this route?