Hi folks
Have just joined the group. I am due to start treatment (Radiotherapy) for the above later this week. Although, I have yet to sign off the treatment plan.
I have just discovered that the people who are leading the radiotherapy have never encountered a case like mine before - I know it is rare.
They have offered two types of treatment - basically one has a much stronger level of radioactive intervention.
They have flagged that either of these could damage my rectum and bladder.
Not particularly positive!
I did ask whether they had sought any advice from any national experts - they have not so far - but I think would be willing to do so.
Has anyone got any experience of the above and any thoughts to share?
I should add that it has not spread anywhere else and I have been on testosterone blockers for approx 6 months so have a very low PSA.
Cheers
Hello laverick551144
Welcome to the group, although I am so sorry to find you here.
I am aware that you have an aggressive form of Prostate Cancer and wish to start Radiotherapy as soon as possible. Off hand i can't think of any Community members with the same condition, that's not to say there aren't any.
My only thought that might help is a gel called SpaceOAR - this can be inserted between the Prostate and the Rectum to help prevent damage to the latter during the Radiotherapy. i am aware that some NHS Hospitals are able to finance this protection.
I hope this helps - please do let us know how you get on.
Best wishes - Brian.

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Hi Laverick.
In May I was diagnosed with adenocarcinoma of the prostate but with some ductal component. Of the samples taken at my biopsy most were the regular type but a number were ductal. I am being treated privately as I have BUPA cover. My oncologist told me he comes across these cases perhaps once or twice per annum.
He has recommended a ‘multi-modal’ approach. I started on Zoladex (Hormone therapy), which is planned for 3 years. Six cycles of chemo - Docetaxel. I’ll finish this on 27/11 and then have December ‘off’. In January I’ll have 20 sessions of radiotherapy followed by HDR Brachytherapy. The oncologist is very confident that I’ll be in remission after this lot!
My Gleason was 4+4 but had not spread outside of the prostate (probably) but I am being treated as though it has spread to the local lymph nodes. Unfortunately the ductal component is not ‘avid’ - it doesn’t show on radioactive scans.
I feel confident going forward even though I’m quite fatigued after each chemo session.
I would ‘push’ your people to get the knowledge they need - it is available.
Best wishes
Thanks for the detailed response - like you my Gleason is 4+4 based on a biopsy of the duct - I have now completed 20 sessions of Radiotherapy and remain on Prostat. I am a bit concerned because at the treatment sign off the consultant said that they did not know if the ductal cancer was 'pure' in other words whether or not some of the cancer was in the prostate. My next review is January. I am doing all of this through the NHS. So, at the moment I am in stasis.
I do hope it works out for you. Even though January is two months away, not much untoward should happen in that period of time - my oncologist said even aggressive prostate cancers grow quite slowly compared to cancers elsewhere in the body.
Whatever cancer throws your way, we’re right there with you.
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