Hi, I now have a Gleason 4+5 score after 3 years of unsuccessful treatment, a toxin trial and hifu on cancer, two tumours, contained within the prostate.
I'm advised there's not a second Hifu option now and the recommended treatment is hormone therapy and then radiotherapy. I'm not sure about this, reason follows, but started on preparatory Bicalutamide 7 weeks ago. My experience so far with that has not been at all bad.
The concern I have is with the radiotherapy because 29 years ago I had it for a testicular cancer excision and follow up, so much the same area. The concern is that my hospital records for the radiotherapy then were destroyed by a flood so there is no record to work with for a second treatment. So risks in a second treatment and I understand greater difficulty if unsuccessful and surgery is the final option.
I was recently advised not to have surgery by the consultant surgeon at UCH as there were significant risks to quality of life, e.g. a 30-40% chance of urinary incontinence, etc. I have since investigated other possible treatments such as SABR surgery, Proton beam therapy, gene therapy but none are available to me. I'm currently considering private immunotherapy to assist, perhaps complement radiotherapy. I'm interested in thoughts/ideas. Thank you.
Hi and a warm welcome to the Online Community but sorry that you had to find us. I am also very sorry to hear about your ongoing challenges.
A cancer diagnosis will bring many questions, lots of confusion and stress but I found talking with other people who are on the same type of journey helped a lot.
The Online Community is organised into dedicated support groups so you may want to look at joining our supportive Prostate cancer group, this is a good place where you will connect with others walking the same type of cancer journey.
Follow the above link then choose ‘click to join' or ‘join’ when the page opens. You can then introduce yourself by putting up a ‘New Thread’ or just join in with existing discussions by clicking on 'reply'.
It’s always good to talk and the Macmillan Support Services provides lots of information, support, financial guidance or just a listing ear.
Most services are open 8am to 8pm, 7 days a week and it's free to call on 0808 808 00 00 have a look by Clicking here to see what is available and we also have our Ask an Expert section, but do allow two working days for replies from our expert team.
Our Online Information and Support Section is a good place to find information covering diagnosis, treatments and pages covering most types of cancers.
All the very best.
