Hi,
I’m new as a contributor to the forum, though I have looked at some of the postings before. I had a Prostate cancer diagnosis about 3 months ago, and I’ve been through a wide range of emotions and doubts. My case has been almost all NHS so far, though I have also spoken to 2 private consultants. I am expecting DaVinci surgery within 6 weeks, and I’m feeling pretty relaxed about my situation. This is my story (so far), just in case it helps anyone else.
MY BACKGROUND
1) I’m around 70 and average fitness and weight. I’m retired. I think it has helped me that I am quite comfortable reading medical stuff, though I have no medical training myself.
2) Around 4 months ago (Oct 23) I had a DRI at the GP which showed a ‘significant’ lump, so I was sent on a 2 week referral to the local Urology centre (NHS). PSA =3.75. He said 'it's probably a 'good cancer'.
3) After seeing a Senior registrar at the local hospital I was sent for MRI, Biopsy, CT scan and bone scan (this lot dragged out over a 3 month period, but it seemed like forever at the time). Net result of all this was:
MRI- PiRAD 5, Likert 5 lesion in the right peripheral zone with associated capsular bulge. No sign of further onward spreading to lymph nodes.Biopsy- Adenocarcinoma in 7 out of 16 cores. Gleason = 3+4 (7)
CT scan – ‘No distant metastasis’
Bone scan – ‘Clear’ I'm not sure they always bother with the CT scan and bone scan!
3) Towards the end of the 3 month ‘diagnostics’ phase (described above) I was called in to see an NHS consultant prostate surgeon who offered me 3 choices a) Watchful waiting b) Robotic prostatectomy c) Radiotherapy.
We both strongly agreed that it was too late for watchful waiting, and I quickly opted for the prostate op. In part I preferred the thought of incontinence from the front rather than the back. He said the urine incontinence was usually no big deal, which contradicted (to some extent) what was said in NICE guidelines or in various online forums. I believed his optimism about the incontinence (and still do), though this is my biggest concern. The chance of keeping my erections is probably pretty small, but at 70ish that’s a price I’m willing to pay. He confirmed that they have a good chance of removing the cancer. He said I’d get an op within 6 weeks (it’s looking more like 12 weeks now), but that a 6 month delay shouldn’t make any big difference to my outcome.
4) My main concern throughout all of this has been the delay. It’s natural to just want to get the cancer out of your body. During this period I have tended to attribute every minor ache to the cancer.
5) I’m currently getting some variable mild pain in the prostate region- it comes and goes away, but I’ve only rarely resorted to paracetamol. The most recent consultant reckons it’s not uncommon after a biopsy and is due to prostatitis (infection). He’s pretty sure it isn’t the cancer itself that’s hurting, but I’m not 100% convinced.
6) I went to see my 3rd NHS specialist a few days ago. This was at the centre of excellence where they’re doing the op. I have now been transferred from the local hospital trust. He gave me the same 3 choices as the local man in 3). This appointment only lasted about 5 minutes because I knew exactly what I wanted to do, and I had no more questions (I’ve now seen 2 NHS consultants, 2 private consultants and an NHS senior registrar!)
I am getting a call from an NHS ‘radio urologist’ in a few days time. This will be the first time I’ll have talked to anyone who actually does the radiotherapy option. It’s a bit late in the day really, my mind is 99% made up now.
I am now expecting to have the robotic op within the next six weeks, but they have said I can change my mind and go ‘radiotherapy’ should I prefer.
‘FEELINGS’
My feelings have been all over the place in the last 4 months. They’ve gone from feeling pretty relaxed, to feelings of imminent death. At times of excessive fear/ panic I’ve gone to see a private consultant, and in my opinion that has been money well spent. At present I am mentally prepared for the prostate operation, though clearly that’s the start of a new challenge.
THINGS THAT HAVE HELPED ME TO COPE AND MAKE DECISIONS
Online help
I called a Macmillan nurse on one occasion, she calmed me down a bit and gave me some helpful advice. Brilliant service, and excellent online help via the website and forums.
Some youtube videos are very good.
I have looked online at research about ‘impact of delay on radical prostatectomy’. I only skimmed one research paper, but it suggested that operation delay does not have a big impact on long term outcome (in my situation)
NICE guidelines
Soon after getting the MRI results I downloaded the NICE guidelines for prostate cancer. I found them to be extremely useful, and it meant I could make sense of everything I was told. These helped me ask the right questions when I saw consultants. Google- ‘Prostate cancer: diagnosis and management’
Getting my NHS data
Several times I have requested my medical data from the hospital (MRI report, CT reports, biopsy results). I quite like to know this sort of detail anyway, but this has often helped me get the information before seeing the consultant. This helps to ask better questions in my opinion.
Private consultants
I have spoken to two private consultants during the last 4 months. This was because I had questions and couldn’t get hold of NHS consultants. They have both been brilliant. Basically they told me to relax and stick with the NHS. Both said it’s a hard call between the operation and radiotherapy route. It’s a matter of personal preference.
In my opinion this was money well spent, and it put any thought of a private op out of my mind.
The NHS
So far they have been excellent, though it hasn’t always seemed that way. Sometimes it appears to go quiet for long periods, and delays are often longer than promised. Fear fills the voids.
Other things
A GP friend told me that she’d advise going NHS rather than private (with Prostate cancer). Mainly this was because the NHS is so well set up for cancer and has a lot of different resources on call.
Whilst I was being diagnosed a friend of ours was placed in a hospice because he’d decided to ignore medical advice and instead he self medicated his Prostate cancer with a ‘holistic diet’. That motivated me towards surgery.
A friend kept telling me to splash out and go private, but talking to the 2 private consultants has prevented this very large spend. Talking the issues through with my wife and friends has been very helpful.
FINAL THOUGHTS
I should have gone to the doctors earlier, but I thought my urinary symptoms were just normal ageing. It could be worse- e.g. brain surgeon Henry Marsh.
My younger brother had a prostate cancer diagnosis a few years ago, and is on ‘watchful waiting’. Unfortunately he didn’t tell me until after my diagnosis.
I had a vaguely recall my father had some sort of prostate op when I was about 15, but I never knew the details. It’s best to tell your kids about this kind of thing!
If you’ve loads of money- I’d recommend a multi parametric MRI every few years (if your waterworks are getting a bit dodgy). They’re harmless and very informative.
I’d also recommend getting a DRI every few years, even if you have to go private.
After I got my PSA=3.75 from the NHS I did a PSA self test that I bought from Amazon. It showed a ‘negative’ PSA (so it agreed with the NHS). I’d advise anyone over 60 to do one of these self tests every year. It wouldn’t have helped me but it would probably have helped people like Henry Marsh (brain surgeon)
