Hello.

Sorry but this is going to be quite long

My father was diagnosed with high grade prostate cancer in 2014. Gleeson score 9, T3 which had spread to the seminal vessels. We was also told there was a rare type of bladder cancer found. A cystoscopy into the bladder showed nothing. He was prescribed hormone treatment and radiotherapy. We were told the radiotherapy would also hit the bladder as well.

Everything went well my fathers blood was checked every year and his PSA level remained very low. He came off hormone therapy in mid 2018.

Last year is where the problems started. I would say about this time last year (Feb 2019) his left leg swelled up. We went to A&E and he had scans which showed no bloodclots and the swelling was put down to lymphodema. In may he developed cellulitis which put him in hospital for a week. He lost lots of weight and had more scans etc.

In July we saw the regular cancer team and the oncologist out of know where started talking about cancer and how to treat it hormone therapy or radiotherapy. I had to cut him off and say hold up are you saying this is cancer? Apparantly there was a mass on the lymphnode which had grown from Feb until his time in hospital. First we had heard. I wasn't impressed.

So we were told that this wasn't prostate cancer. PSA remained very low. He suggested it was probably bladder cancer. They couldn't biopsy because it was too close to a vein. So he had 1 dose of radio therapy in July and the leg swelling subsided. He also wanted to look again in the bladder. So a pre op assesment was scheduled for September.

During this time. My father developed pain in his right side which was travelling around to his back. At the time we never associated the two and assumed it was gallstones (he had been diagnosed in Feb with the scans) 

The nurse at the pre op in September checked him over and also said gallstones. At the pre op we were also told if the cycstoscopy isn't scheduled in 3 months we would have to go through another pre op.

So after september the pain kept getting worse along with more weight loss. We was sent from pillar to post. All the while waiting for the cystoscopy Gp would send us to someone. They would say you don't need to see us you need to see your GP. Eventually we ended up with a breast surgen. He ultrasounded his nipples and said he had gynocomastia but as for the other pain. He suggested we go back to the oncologist. So we did. The appointment took 2 months to make, our appointment was 16 December. More pain more losing weight. More waiting for the cystoscopy.

At our appointment in December. We had a new oncologist who to be fair seems very good. She told us. That he has never had ANY bladder cancer at all and where this has come from she doesn't know. So not liking how much weight he has lost and the pain. She schedules a CT scan.

The scan was for end of Jan. Not wanting to wait that long we got a cancelation on New Years Day. 2 weeks after the scan we had another appoitment with the new oncologist mid January. The scan confirmed there was cancer on the left pelvic wall as well as lung, bone and lymph node in the chest. At this point my dad is in so much pain he can't go to bed and can only sleep in the livingroom chair. The painkillers prescribed by the GP barely work.

An endoscopy biopsy was scheduled for Mon 13th Jan. We were told results would be 2 to 3 days. Exactly 2 weeks later we were phoned and told the endoscopy was inconclusive. Straight back in the next day and this time the main surgen was going to do it and take lots more samples. I spoke to the surgen and told him our next appointment with the oncologist was Mon 10th Feb and would the biopsy results be ready. He said absolutely. All this time my father is still sleeping in the chair and barely eating

At our appoitment with the oncologist the biopsy weren't ready and the surgeon was on leave. My father asked could he be admitted to the infirmary because he can't go on the way he is. She spoke with some people and arranged him a bed. Speaking with the oncologist she assured me that his isn't prostate cancer and it could be lymphoma or something else. I am suspicious that it may be prostate cancer as it seems a coincidence that the lump in the hip appeared mere months after stopping hormone therapy

At the hospital the biopsy results came back inconclusive again. In the last week we have seen 3 doctors. First doctor says it's likely prostate cancer. Second doctor says it isn't prostate cancer. Third doctor says the deposits on the bone will be prostate cancer with perhaps another cancer but ruling out lymphoma. Our oncologist says it isn't prostate cancer. The scans done in the hospital this week also show an increase in tumour sizes as well as a spread to the liver.

They are keen to discharge him now. So most likely Monday 17th he will be out. They want to arrange another biopsy. This time the lymph node in the neck. But the doctor says this can take up to three weeks to book the procedure. I feel this is time he doesn't have. 

I am dumbstruck at how we have got to this point. We are nearly a year from when this was discovered in the hip. We wasted 6 months waiting for a bladder cystoscopy with no scans in that time while the cancer has been allowed to spread around the body. Every appoitment or scan booked takes weeks or months. If cancer is time critical it seems ridiculous to me.

I am struggling to know where to turn at this point but waiting another 3 weeks for for a biopsy isn't an option.

Does anyone have any idea what this cancer could be and who we can contact to get everything sorted quickly so we can move to treatment before it is too late.

Thanks