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I got very lucky

Posted 18 Jun 2019 at 08:36

Hi All - I was diagnosed with PC last Oct, 2018 at the age of 52.

Symptoms were too many night pees and some discomfort on the RH side of my abdomen and general fatigue. I had one of my regular, 6 monthly PSAs (I insisted on 6 monthly with my GP, as I had had a great mate who was diagnosed at 52 with advanced PC 3 years before...he didn't make it.)

PSA was followed by consultant/registrar appointments and then MRI, which revealed "something we're a bit concerned about". MRI led to biopsies, not particularly pleasant, but necessary and certainly a new experience!

Diagnosis followed a few weeks later, after the All Cases team at Wycombe Hospital had concluded grade ad Gleeson score of the cancer. Options were explained (2 types of radio therapy and surgery). I chose surgery for ease (I actually quite like medical stuff....I know, I'm a bit weird!) and speed, but in the full knowledge that I may have ED and obviously became a 'jaffa' overnight!

Just as I was being diagnosed, my Dad was taken into hospital with an urgent bladder issue. Long story short, he was then diagnosed with advanced PC and later confirmed that this was metastatic (in many bones), but I am happy to share that he is doing well, maintaining the condition on hormone injections and his PSA has been brought down from 93 to 2.4....lower than my original test! He feels a little more mortal of course, but is 86 and still looking forward to whatever time he has left...could be a few years, could be less, like all of us really.

So, not only do I consider myself lucky to have it discovered early, but as a relatively young man, 'radical' (taking out the gland) surgery, is the easiest and quickest way to be 'cured'.

Surgery followed a few weeks after that at end of Nov 18 and was home in 2 days, all stapled up and well briefed on how to change my catheter/pee bags and inject myself with ant-coagulant for the next few weeks.

Surgery/anaesthetic probably took me a bit longer to get over than I expected (took 6 weeks off work, but my work also involved a lot of international travel). After effects include some incontinence, but I quickly got used to the TENA pads and of course am still getting used to the ED (still to be sorted) and the loss of other man functions!

Very happy to try to help anyone who is at any stage, by speaking or discussing matters on here.


Posted 18 Jun 2019 at 11:07
Hi Simon,

Pleased you and your Pa are doing well.

Do you have any male siblings or children? They should be made aware of your familial link in due course.

Cheers, John.

Posted 03 Jul 2019 at 07:40

Thanks John and sorry for delayed response. I don't, but good thought.

Have been amazed about how little general awareness there is about PC (despite the great work done by PC UK) and am spreading the word in all possible ways. PSA's have become a norm amongst my rugby and tennis mates, at least!

All the best, Simon

Posted 03 Jul 2019 at 09:18

I took part in an awareness event in Reading town centre on Saturday.

We spoke with over 260 men or partners, most of which should result in a PSA test being done if they follow through. They all went away with the PCUK or Tackle information Z-cards, and in many cases, also more detailed information, and/or detailed discussion about symptoms.

A lot of people wont speak to you when they realise what you're going to talk about. We were wearing tabards saying what we were doing - I can't remember the wording but it did mention Prostate Cancer. The reactions from these people was notable. You engage with a smile first which they respond to, and then it takes a second or two to read the tabard, and they do a sharp about-turn and walk briskly in the other direction. I managed to stuff the Z-cards into the hands of several gents who wouldn't speak to me, and said read it at home. Also, suddenly claiming they don't speak English (in perfect English).

It was very difficult to engage black people in conversations - I only succeeded once, and I think there was only one other encounter on the stand. This is a big issue with PCa awareness, and some parts of the community at twice the risk are very hard to reach out to. There are almost none at any of the support groups too.

Also, quite a few (more than I expected) said they already had PCa and were still going through diagnosis, or treatment, or had finished and were in remission. This changed my conversation to that of close relatives and warning them about risks of PCa and breast cancer.

Posted 03 Jul 2019 at 09:23

Brilliant, well done Andy62. Did you organise yourself, or was this via PC UK?

Posted 03 Jul 2019 at 10:24

It was organised by Reading Prostate Cancer Support Group.
They did an earlier one in March, and they're doing another one at The Classic Car Show at Newbury Racecourse on August 11th (which I probably can't attend due to treatment). We use materials mainly from PCUK, but also Tackle.

You could look for a local support group if you want to help out. There's a list of some on the PCUK web pages, but if you said which town, people might respond with those near you. The local support groups generally have less knowledge that you will find here, and might benefit from anyone willing to join and help them, and organising or helping with awareness events. A few local support groups do have resident consultants in attendance.

Posted 03 Jul 2019 at 10:30

Thanks Andy v helpful. Wish you all the best with your treatment. Simon

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