Doctor has given him 18 Months to live

Hello n-g-i and welcome.

Like AWR I don't have the necessary knowledge to give "proper" advice but to give you hope there are members on here who have lived for many years with metastatic PC and I sincerely hope that your other half becomes part of that statistic.

I would be surprised if any reputable surgeon agreed to do a prostatectomy, privately or on the NHS - it would be a huge operation with big risks and serious side effects for very little benefit once there are mets.

Has the specialist or your GP explained exactly where the mets are? Generally, once the soft organs (liver, spleen or kidneys for example) are affected, the disease moves quite quickly. But chemo, if it is offered, is probably your great hope ... my father-in-law had chemo at age 79 and found it fairly easy to cope with. All the research says that for most men, the chemo makes enzo, abbi or other hormone treatments more effective for longer.

PS the da Vinci RP would probably be more high risk for him than open - it is often more hours under general anaesthetic and the man has to be tipped head down for a number of hours which can put a huge strain on the heart.

He's a quick update after learning a few things about what happened back in March. Some info will overlap with the above.

March 9th: 999 call after 4 days feeling unwell and not eating. Kidney test showed efgr of 3 that night, with a creatinine level of 1000. Ie. End stage. Nephrostomy fitted and the doc at the hospital gave him 6 to 18 months to live as mentioned above. 8 days in hospital and he lost 15 lbs in weight despite me taking him food every day.

A few weeks later and he wasn't feeling very well. We had to get an emergency marriage and on that very day he got a fever and started shaking. Despite his friends telling me not to get him to hospital "as they will finish him off", I decided to ignore them and call 999...on the very night of our marriage.

They couldn't find out what was wrong for a few days and were about to fit a second nephrostomy in the kidney that they previously said was no good/too late. They then realised he had ecoli. I am SO glad I made that 999 call. It wasn't the type you get from food either. They asked him if he wanted to be revived if he became unconscious. He was really shocked and said he didn't feel "that bad". We had to get a solicitor in to tie things up. He wanted to make sure I was safe from any vultures that may be flying around should he die. Typical of him to be thinking of me when he's potentially on his death bed. They then send him home with some antibiotics and fingers crossed that they work.

We then go to see the oncologist. I mention that the doc at the hospital said he has 6-18 months left. She said "It will be months". I was so shocked....again. He was having none of it and didn't believe her. I asked about chemo and she said it's not advisable due to his kidney damage and the quality of life won't be very good. They had given up on him. She said if he starts feeling better he can go on enzolutimide again.

So, after various meetings, scans and lots of confusion we get lots of contradicting information.

Doc 1 puts his hands on John's knees (hubby) and said it's metastasised and looks really sad for him. We decide to keep the nephrostomy in rather than having a stent as he doesn't want to be getting up all night for a wee. Sleep is so important, especially at this stage.

John then starts bleeding from his penis again. They decide to put a supra pubic catheter into his bladder. He now bleeds into that every day.

Oncologist: Looks at the results from the Cat scan and MRI and tells us it hasn't metastasised. Great news but why are we getting contradicting information? She tells us it is localised cancer.

Doc 2....it's not localised, it's locally advanced. It's in his bladder but it hasn't spread to anywhere else in his body.

I get concerned about the amount John is bleeding into his catheter from his bladder so I call the hospital. He is also getting blood clots and it blocks. They decide to give him a hemoglobin check and we organise the district nurse to wash out his bladder 3 times a week. (I now do this myself for him).

I ask the oncologist if they are just going to let him carry on bleeding till he dies? They then offer some radiation therapy over 5 days.

Doc 3. His prostate has been completely replaced by the tumour and is now 8cm in size. "It's a t4 but you still have no signs of the cancer being anywhere else in your body other than the prostate and bladder. Your bladder has now collapsed though."

Today his bleeding has stopped. It might be temporary as it stopped a few weeks ago too but it's a good sign. His PSA is also down from 81 to 54. The doc said that might be due to the radiation therapy killing some cancer cells but I've also got him on bicarb and molasses just in case it works. His kidney damage is also now at moderate stage rather than sever or end stage. I have got him avoiding food like meat and drinks such as coffee to help give his kidney an easier time. I have monitored this and he definitely feels unwell the day after having meat or anything that gives the kidney a hard time.

Over these terrible months (the worst in our lives) we have managed to go on a lovely holiday in Cornwall, visit theatres in London (he loves that as he was an actor) a few times and despite being told he had "months to live" he has just organised an evening at St Lukes where he read poetry to a room full of people and raised £540.

John is twice my age and we barely have anything in common, but we love each other to bits and he is literally...my hero.

Edited by member 06 Oct 2017 at 19:16  | Reason: Not specified

Is your hero strong enough to cope with bladder removal? I've had five very good years after a radical cystectomy and despite the inconvenience of peeing differently from most men, my quality of life is great. If it is possible to get rid of that tumour and the failed bladder and be strong enough to fight on, I'd do that.

AC