Hi all
Been viewing some of your threads on this site so thought I’d post my experiences to date.
All this information in on my profile, but in short was referred for further investigations (MRI and biopsies) when PSA reached 10 in November 2021. Was diagnosed in April 2022 with Stage 2 cancer in the right of my prostate (in 3 out of 8 cores) – no spread is anticipated. Scoring was T2a N0 TX, Gleason Score 3+4=7.
My cancer journey started a little bumpy when first time I saw doctor following biopsies, the news was broken as ‘So you know you have cancer…’. Of course I didn’t up until that point. A young HCA also in the room looked distraught with how the news was broken. Nevertheless, I was probably expecting the diagnosis, though had not had any symptoms, so took it in my stride. The MDT at my home Health Board recommended radical treatment, either surgery or radiotherapy. In my mind I knew that I was going to go the surgical route, reinforced when I was told that there was always potential for radiotherapy at a later date if necessary.
At this point, in my naivety, I had expected, that all the support mechanisms would immediately fall into place and that there would be people sat at desks just waiting for me to call (not really, but you know what I mean). From the date of diagnosis in April, until I finally saw my consultant a couple of months later (and then via a private consultation), I found this period to be so frustrating and stressful. I never envisaged that I would be constantly be phoning/emailing/texting GPs, cancer nurse specialists, consultant secretaries (of two different Health Boards due to the particular cancer pathway in West Wales), etc. On most occasions you did not get a response, or if you did it was ‘I’ll ask someone to call you back’ and never did. Family and friends kept on at me to chase things up, complain, etc. all of which just added to the stress levels. My case was referred to the urological surgical MDT in our neighbouring Health Board, and for a number of reasons, there was about a month’s delay on my case being discussed.
Some of this administration was just poor, but having worked in the NHS for about 30 years in an admin role, I know that most of the issues was probably due to a lack of resources. My McMillan cancer nurse specialist is really good, just probably has a massive workload and not available as soon as sometimes I would have liked. Also, the McMillan office were fab when I contacted them.
Anyway, in the last week I have been to a hospital in Swansea to sign consent forms and pick up pre and post op medication (a carrier bag worth!). Today I have been down to UHW in Cardiff for pre-op assessment and think it went OK. Hopefully the surgery will follow in the next 4-6 weeks.
Picking up on some other threads I’ve seen over the last couple of days, Scottish Widows paid out my Critical Illness claim on 3+4=7 which was a great relief as I get no sick pay, having partially retired and now working in the NHS on ‘the bank’. Also, it allowed me to consider going down the private route. I did book an appointment at the London Clinic, only for the rail strike to scupper that plan. However, I was concerned about how easy it would be to source post op support so am glad that finally got the NHS route sorted.
By May my PSA had increased from 10 (in November 2021) to 15. I understand that there can be a number of reasons for this, but it was a little disconcerting. To that end, I took the decision to take HT between now and the operation date. Until November 2021 I had been on testosterone therapy (Nebido) and my testosterone was getting quite high. I therefore didn’t want to take the risk of my current cancer getting any worse by the time of the op. I have been reassured that this is highly unlikely, but if it did happen and I hadn’t taken up the option of HT, I would be kicking myself. Can’t say I like the potential side effects – I have some breast tissue from a prolactinoma (pituitary gland tumour) around 20 years ago. Hopefully, as the HT will only be short term, then the side effects may not kick in. One thing I read on one thread was that nothing could be done to be rid of this breast tissue – could this not be removed surgically?
Finally, I have just downloaded the ‘Squeezy for Men’ app for pelvic floor exercises, made an enquiry whether vacuum pumps are available on prescription, and made a note to get some Instillagel and waterproof bed sheets from Dunelm!. All these things I have picked up off this site. There is a tremendous amount of experience and knowledge on here, and I am so grateful for it.
So, all in all, the journey so far has been a little rocky. I didn’t panic when I was told I had cancer, just saw it as something that needs to get sorted and was relieved that the cancer is seemingly not more advanced. The apparent lack of action following diagnosis did cause some anxiety, but now that there seems to be a plan I am a little more relaxed. Looking forward to having the surgery. Not looking forward to potential ED and incontinence issues.
Once again, thank you to those who post on here, it makes a huge difference for newbies like me. Very best wishes and the best of luck in all your journeys!