Some are fully aware of what is going on in my life at the moment, some have read my profile and seen the odd post that hints at something. I thought now was as good a time as any to share with people what has been going on. My hope is that it will encourage people to keep an eye out for symptoms, to not shy away from getting checked and to encourage loved ones to get checked.
So as we came to the end of 2020, lockdowns were easing in the UK and the vaccine was starting to roll out, everyone was looking forward to the back of the year and all the jokes were to tiptoe into 2021 very quietly. Just before Christmas I noticed that my pee flow was not as strong as it had been and thought as my father had had a benign prostate enlargement (BPE) it would be something like this. The season took over and it wasn't until January (11th) I call the Dr about it.
I explained my symptoms and he booked me in to get a blood test done - he did a full set of tests including my PSA (Prostate-specific antigen). The Dr was on the phone two days after my blood test about the results. All the results came back indicating acceptable or good, with the exception of my PSA. Normally anything upto 4.0 ng/mL is deemed acceptable, my result came back as 38 ng/mL.
That phone call started a whirlwind of activity. I was booked in to see a urologist and was in front of him a week later. He did a digital exam. Now people comment that it is uncomfortable, I would say it's not the most dignified procedure, but the gel felt cold other than that it was done and over with in seconds. On the basis of that, he had felt some hard lumps and when I suggested BPE, he said it was possible but unlikely, I should expect it to be cancer.
On the back of the urologist appointment, I was sent for an MRI, a contrast enhanced (CE) CT scan and a bone scan and also booked in for a biopsies after these.
The MRI and CT were much the same as normal (I've had a few before), though this was my 1st CECT. It was the weirdest feeling during the procedure it felt like I was full to bursting of water and just wanted to pee out of every pore The bone scan, I had to visit the hospital to get injected with a radiation marker and then go away for a couple of hours. All was going well until the end of the scan the radiographer spoke to the Drs about my scan and they wanted some more take. Now I was paranoid that the cancer had spread to my bones.
The biopsies took place a couple of weeks later - biopsies because they took 30 samples. I walked into the room and there was a bed with stirrups on, which my feet were strapped into and that was just the start of the indignity. There was a Dr (the only other man in the room) and 7 nurses and trainees and worst of all I saw what looked like two 8 inch needles on a trolley at the side. Well the start is an anaesthetic to the nerves either side of the prostate, that is what one of the needles was for - that was gut churning feeling the needle going through my perineum into the nerves. Next was an ultrasound probe so the Dr to see the prostate, that was about 8 inches long too and about 1/2 inch across. Finally the biopsies, 2 small holes were made either side of my perineum and a tool inserted to take 6 samples from the 4 1/4s of my prostate plus 6 others (the most they take). Each cut felt like an elastic band was being twanged against my prostate. The staff were all very good and the atmosphere was kept light... as light as possible and I was in an out in the same day. Though I was sore for a few days after.
It was the following week I had my follow up and given my formal diagnosis - stage 3 locally advanced aggressive prostate cancer with a Gleason score of 9 (4+5). It was pretty devastating despite all that had been said, to get it confirmed. It did not help that my sister's long term boyfriend had died of lung cancer the previous year. Initially there was talk of having an operation to remove my prostate but they decided that doing so would risk too much damage to the nerve bundles that run either side. So they opted for radiotherapy and I was referred to an oncologist. Before my first appointment I was started on hormone therapy (or androgen suppression therapy) the idea being that this slows or stops the growth of the cancer. After just over a month on the hormone therapy my PSA had dropped from 38 to 7.0 ng/mL. The plan is to be on the hormone therapy for a total of 18 months.
Meeting the oncologist was actually quite the breakthrough. I had been reading a lot and there was talk of 1, 5 and 10 year survival rates for stage 3 and Gleason scores of 9. She immediately talked about external beam radiotherapy followed by chemotherapy, which all sounded a lot until she also said there was no reason to not expect to live for another 40 years. In the UK for prostate cancer it seems that people undergoing radiotherapy have between 20 and 37 treatments - I got the full 37.
Until this point I was doing fine. I think I had welled up once when the urologist 1st said to expect cancer. I went to get measured for therapy where I got 3 small tattoos to help with their targeting and a couple of weeks later it started. The 1st couple of weeks were easy - I drove myself to the appointments, read some smut while drinking water to fill my bladder. When I was called in, I changed into some ultra sexy paper underwear for modesty, was taken through and got onto the table. Feet went into a holder and knees were held up a little. First there was a CT scan to check everything was in the right place, if it was the treatment started. All told, if everything went straight forward I was on the table for no more than 15 minutes. Then it was pee straight after and then race home to get to the loo again.
Each week there was a review with a senior radiotherapist and it was about 1/2 way through treatment that I broke down with her. Despite the support I got the overwhelming feeling of being so lonely and I came very close to throwing the towel in and letting the cancer do what it will (this wasn't the 1st time I had an argument with myself about whether to have treatment or not). Other effects included being constantly tired and needing to visit the loo far more regularly even than right before the treatment started - it was after all that whole region that was being pummeled with x-rays everyday, these effects didn't stop when I was asleep either so waking 4 or 5 times through the night was not unusual.
Everyone in the radiotherapy team were fantastic, I can't thank them enough!
I finished the radiotherapy on Monday of last week and slowly some of the side effects have finally started to abate a little. Next step is a blood test in a couple of weeks and my next oncologist appointment is on 17th November and that is to review the radio and where my PSA is at. Also to discuss the next steps - chemotherapy. I will post again when I know more.
Of the people that use the forum regularly I would like to thank AvidlyCurious for checking in on me nearly daily and for being there when I was collapsing and for the regular mails from Kimmi checking up and offering to stick things up my bum :) There have been a few other Lushies that have been there for me in different ways and I am so grateful to all of them.
TLDR - prostate cancer can sneak up on you (or your loved one) - if you have reason to; such as symptoms or familial risk (that can include breast cancer!) make sure to get a PSA test done if not before but by 45.
If you have not had one before it is worth talking to a Dr and getting one done at 50 - those couple of years could have been the difference between stage 2 and stage 3 for me. It would certainly have meant that my treatment would be done and dusted with me.
Finally, remember that this can affect anyone that has a prostate.