Age 57, PSA 4.5 & 3.8 on follow up, Gleason 7 (3+4) 5/7 cores LHS positive RHS benign, Grade 2. MRI PIRADS 4 - capsule intact, normal appearance of seminal vesicles, no lymph involvement T2A No, no bone abnormality.
Firstly I want to thank everyone on here. Their contributions and especially peoples stories/ experience have been of great help and comfort to me during what has and remains a difficult and confusing time. I thought that I should reciprocate and share my experiences and thoughts in case they help someone. Apologies for the length of this.
In early November 2022 I mentioned to the nurse practitioner at my GP during my annual health MOT should I get tested for PC due to age even though I had no symptoms. She ran through my risk profile and family history and suggested I should get tested. My mum died of breast cancer and I now understand this is a contributory factor in the risk profile. A few days after the test the surgery rang and advised I make an appointment with the GP. At the appointment he undertook a DE, which he advised was clear and explained my blood test showed a PSA of 4.5 just above the suggested level. On account of family history and PSA he referred me for an MRI scan, which was done just before Christmas.
In early January I received a call from the urology dept. at the new Royal Liverpool Hospital (RLH) advising I had been referred there and an appointment was made for a couple of days later to discuss MRI results. At this appointment I was advised the MRI had picked up something but was inconclusive and a follow up biopsy was advised. After being told the possible side effects I agreed and this was arranged for a couple of weeks later.
I have read peoples experiences of the biopsy and I was concerned. It is not the most pleasant of experiences but I found it uncomfortable rather than painful. It was quite surreal making small talk with 4 strangers with your legs in stirrups! It was no worse than a trip to the dentist and at least you can talk during the procedure unlike at a dentist when you have your mouth open. It took me a couple of hours afterwards before the nurse was satisfied I was passing water sufficiently before letting me go home. I worked from home the next day just in case but I was in no great discomfort and other than blood in the urine for a few days had no long lasting effects.
At the follow up appointment on 13 February I was given the news I was half expecting - I had PC. Whilst a shock I was relived that it had been identified early and could be treated. I work in property and if there is a problem in a building you deal with it - I took the same attitude with my body. My body is a temple (not sure of what 'Doom' perhaps!) and needs sorting. My wife who was with me was shocked. The Dr explained the prognosis - I was low to intermediary risk, it appeared to have caught early was treatable and at this stage my life outcomes were positive. He then passed me over to one of the nurses who explained the options:
1) Active surveillance - not recommended. She advised I was young and fit and better able to cope with treatment now. I did question her medical competence at that point as it is a long time since I have been described as that! She explained in the world of PC I was and it was not unusual for them to be dealing with people with a PSA levels significantly above mine.
2) Surgery - explained with all the side effects
3) Radiotherapy - again explained with side effects
4) Brachytherapy - this was explained but not pushed.
Other alternatives HIFU and Proton Beam treatment were mentioned but these would require a trip to London
Appointments were arranged to meet the surgeon and oncologist a couple of weeks later to discuss the options.
When we got home I told my grown up children. I was surprised at how shocked my son was and how badly he took it. I had to explain it was treatable and should not affect anything long term. We have had friends and family who had suffered badly with cancer and I suspect he was thinking of their experiences. My daughter who is a nurse was more positive and interested in the medical side.
After a couple of days of reflection I decided to be open and tell people. Colleagues in work were shocked and supportive.
After meeting with the surgeon and oncologist on 24 February I decided to go with surgery. Interestingly the oncologist when asked advised I should go with surgery as I was 'young and healthy' (again!) and there was a back up of radiology in the future if required. A date for surgery was set for 24 April with instructions to get as fit as possible and lose 6kg (1 stone).
With 2 months to prepare I set about using my remaining holidays (walking in Lakes) enjoying myself and booking concerts, seeing films etc and preparing work for my absence as well as losing weight. I went on the 3B diet (no booze, no bread, no biscuits!) and 'cheated' by getting low calorie 'ping' meals. I found gym kitchen to be the best. On the surgeons advice we also cancelled an island hopping trip around the Greek Islands booked for early June as it was unlikely I would be able to enjoy the trip due to possible side effects and strains (we were going 7 weeks post surgery). There was no issue with cancelling and insurance covered it.
Just before Easter the hospital rang and my surgery had been bought forward to 12 April. Due to the Junior Doctors strike the surgeon had rearranged so the simpler surgery which did not require Junior Doctor support was swapped with more complex cases which required the presence of junior doctors. Not sure how I felt about that! Cue panic to change arrangements, sort out work and prepare myself.
I turned up at the hospital on 12 April in the knowledge I was the fittest and lightest I had been for many years (I lost 10kg) albeit with a poison inside of me and would be coming out feeling awful - not a nice thought. I was prepped and before I knew it I was waking up in recovery some 4 hours after going under feeling dozy. I was then moved to my room. The new RLH has all private rooms. I was tired and sore and required pain relief every few hours initially. During the night I was woken every couple of hours for obs to be taken so a very fitful nights sleep. In the morning the surgeon came and advised the surgery went well and the nerves on the right had been spared but he could not spare the ones on the left due to the location of the tumour. By 5PM I was ready to go home.
The first few days were painful. Limited mobility which made getting in and out of bed painful plus the fun of the catheter. After 4 days I was by passing and the hospital advised I was to come back in. They flushed me and a clot was discovered. I was sent home but was by passing again. I returned to hospital and they removed the catheter and replaced it (eye watering!). I was still by passing. They concluded I was having bladder spasms and sent me home with drugs and pads. Until the catheter was removed I was by passing so it was painful and wet. The last couple of days were especially painful and I wish I had asked for some gel to numb the pain
After 9 days I returned for the catheter to be removed. I flooded the place on removal and could not control myself. The nurses advised this was not unusual it would get better and sent me home with a supply of pads (level 2), instructions to do my pelvic floor exercises, prescription for a vacuum pump and sildenafil which I was to start taking (so far no effect!). The next couple of days were the lowest. I was soaking the pads and wetting myself day and night with no control. I ran out of pads and had to buy more. I had been referred to the bladder services team but due to the weekend it was a few days before they got in touch and eventually a fresh supply arrived (level 4). It did make me chuckle that there was no effort to disguise the boxes on delivery - all my neighbours now know! One of the benefits of being in Liverpool is they provide pads on prescription. Things began to improve and within 1 week of the catheter being removed I had gone from 9/10 pads in the days and getting wet to 3/4 pads a day and staying dry.
Here I am 2 weeks after the catheter having been removed and just over 3 weeks post op. My mobility has improved. I no longer need pain relief. I did over do the other day with over 6,000 steps and felt it for a couple of days (it felt like I had a stitch) so I have reined back the walking to just 3/4,000 steps to the local coffee shop and back. I am less tired and have started getting back on line for work for a few hours each day more for my sanity as I am getting bored. For the 1st couple of weeks I was tired and could not be bothered even reading. Continence has improved but still a way to go as I can feel dribbles when walking and getting up from a chair etc despite trying to squeeze. Perhaps the biggest issue is my little 'fella' - he is smaller and they never warned about that. This leads to practical issues when peeing and dribbling onto my trousers. I need to review my technique! There is a still a way to go and I would have confidence issues about returning to work if continence does not improve. The improvements there seem to have plateaued for a few days possibly because I over did it? I have got he squeezy app and following the timetable religiously. I have also lost another 4kg. At this rate a new wardrobe will be required!
What next? My follow up with the surgeon is mid June so hopefully the PSA and results of the tests on the removed prostate are positive. I've also appointments with the bladder clinic in a couple of weeks so hopefully the continence has improved. I have been signed off for 8 weeks but depending on continence and how I feel I hope to get back to work and driving late May/early June. As for ED well that is the last thing I am worried about the moment. I have been told not to use the pump until after seeing the surgeon. So far the tablets are having no impact. I have other things to worry about (getting fit and continence) and my wife is very understanding.
Some thoughts on my experience to date
1) Be patient - everything takes time, waiting in waiting rooms, waiting for results/appointments, recovery etc.
2) Everyone is different - just because 'so and so' remained incontinent or was running marathons 3 weeks after surgery does not mean you will. It is like looking at trip advisor for hotels you generally ignore the more extreme reviews and focus on the average. So it should be for recovery from surgery - average is good.
3) The NHS - I cannot complain. From initial consultation in November 2022 to surgery in April 2023 seems like a positive to me. Perhaps I am lucky being in Liverpool where there is access to brand new facilities at Clatterbridge (for oncology) and the new RLH which has a specialist urology unit. The staff have been excellent.
4) Tell people - I realise this may not be for everyone but with the greatest respect to the work Prostrate Cancer UK do nothing beats personal experience. I have been telling people to get tested and I know of at least 3 people who as a result of my experiences have gone to get tested who otherwise wouldn't (they're the ones who have told me)
5) Stay positive - this can be hard. I know. The 1st couple of weeks post surgery were difficult especially after the catheter was removed. It gets better. There are always people worse off than you. I have a friend who a couple of years ago was told to put their affairs in order as they had 6 months left (different cancer). He is now free from cancer after a really hard 2 years of treatment but he stayed positive and came through it after vowing to fight.
Finally I want to thank my family and especially my wife who has been very patient and understanding. She has helped me through this so far. Fingers crossed for the future
Thank you and I hope someone finds this helpful