We are just home .
He is starting hormone therapy hopefully today as we have handed in the letter to the GP apparently THEY THINK. Yup they think that the lymph nodes at the bowel is too near for surgery . Not fully confirmed but they will not consider surgery .
They also don’t know if he will receive radiotherapy until we speak with the oncology consultant as again the lymph node is too near and it could cause damage to his bowel . So we are in limbo other than been told he is not terminal . But for how long and I just couldn’t ask in front of him. He thinks that the HT will halt it BUT !! Another shit day as have two faces one for OH .
any help would be gratefully received as last week were were looking forward to him getting surgery on a curative pathway now it’s not .
UPDATE
after having a restless night I called the oncologist secretary to ask if we could have an earlier appointment due to the above post .she was great and although no appointments earlier she has put OH on top of the cancellation list due to our anxieties . She also transferred me to the oncology specialist nurse who listened and then said let me check out everything . OH still on surgical appointment in July but that might change and she doesn’t know why we were told it was doubtful that he wasn’t suitable for RT and he would start it three months after starting HT. she said she was going to double check everything and if she found out something that she could not see at that point in time she would call back later . She gave us lots of information and told us to call anytime even if it was trivial provided contact number . No call back so we presume the info was ok . She was a breath of fresh air today . Thanks everyone for your ongoing support x
Hello johnam
Well you know just why surgery has been ruled out. Sorry but they do need to be sure to remove everything with surgery,
he is not terminal .
That's a great piece of news to come out of the meeting - look at the positives.
In a nutshell Hormone therapy stops the production of testosterone - it works very quickly and within a few days any cancer growth will stop. the radiotherapy is to kill off the cancer cells for good.
Let's hope your oncology consultant is a more positive type who can sort out radiotherapy to the prostate and pelvic lymph nodes without causing any bowel damage. Let's face it targeted radiotherapy is very accurate and i can't see a problem.
At least you are now moving forward and he's started his Hormone Therapy - I am so sorry about the disappointment regarding surgery and can understand how you feel.
Best wishes - Brian.
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Hello Johnam, I’m so sorry that your troubles continue. As I have said, this part of the journey is really tough on the emotions. I will try to address some of the problems.
i always remember the prostate cancer specialist nurse telling us that the minute my husband took the first tablet the cancer would be stopped in its tracks. I’m not sure it’s the very minute but probably near enough:) The cancer needs testosterone to grow and spread. The tablets and, later, injections, stop the cancer getting that testosterone for some time before learning how to get round it. At that point, other drugs are brought into play.
one of the risks of radiotherapy for prostate cancer for all men is damage to the bowel. This damage does not exclude the possibility of bowel cancer later down the line. There is a gel ( google SpaceOar) which can be inserted through the perineum which can protect the bowel from the radiation. This is not provided on the NHS in England. It has to be done privately.
I know several people posting here have had radiotherapy to lymph nodes and they may give you more info.
the statistics for survival after RT and HT or after surgery are almost, if not completely, the same. There are different problems associated with both pathways. Any surgery with anaesthetic carries risks of bleeding, infection etc. with prostatectomy there are the additional risks of ED and / or incontinence. With RT and HT you have the affects of both - ie bowel damage, fatigue, CVD, mood swings, hot flushes etc etc. I think you will know about these?
in both pathways you have no guarantees that the cancer will be eradicated. After prostatectomy you can have ‘salvage radiotherapy but you can’t have surgery after radiotherapy ( well, I’m told you might be able to but it’s really tricky and the risks are much higher so rarely attempted).
There is no perfect choice for this darned disease, I’m afraid. Life can be a bitch and our menfolk are statistically in with a 1 in 8 chance of getting it - more so if a close family member has been diagnosed with it and if you are of black ethnicity. If only they could diagnose and treat in the early stages things would be so much better!
however, what we found was that the treatment ( we went down the RT and HT route) does have an impact but it does not mean the end of enjoying and appreciating life! Everyday now, I am thankful my husband is still here ( who could I nag and who could I cuddle up to in bed to keep warm, otherwise!! ) and has a chance of the cancer not killing him. For that I’m thankful and tomorrow can take care of itself 
Hello johnam
Two quick ones:
Below is the link to Prostate Cancer UK's Hormone Therapy leaflet:
https://shop.prostatecanceruk.org/our-publications/all-publications/hormone-therapy
Yes, I have had my pelvic lymph nodes "zapped" by radiotherapy with no side effects (although I am under a specialist Cancer Hospital - Christies Manchester).
Best wishes - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
