March 2019
Just lately I joined a Facebook group
https://www.facebook.com/groups/liviingwithpc/?fref=nf
The page is administered by Bob & Linda Tarbet and I'd advise anyone to have a look at it. I've already been able to facebook chat to several fellow sufferers. Bob & Linda have done a great job putting it together and continuing the admin.
Anyone wishing to join the group should flood Linda's recent advice:
Message from Admin:
Please can we remind members NOT to invite others to join this Group. They must request to join themselves and answer the two questions. Thank you.
One thing that strikes me from the comments is the number by the families of men with PC. There is a lot of good advice available, PCUK and Macmillan etc but it's good to be able to discuss everything with fellow suffers. I think it can very reassuring.
Anyone previously reading my blog will know that I was diagnosed by a change to regular PSA blood tests:
https://www.nhs.uk/conditions/prostate-cancer/should-i-have-psa-test/
In my case it was a change to my usual PSA level ( 3ng/ml ) up to 4.1. which led to further investigation. The problem with the PSA test is that even 4.1 isn't necessarily a worrying result, what matters is a significant change to a mans normal level. I had been regularly tested as I am in a higher risk group as my Father had PC when he was 59 (I was exactly the same when I was diagnosed.
My change 3.1 to 4 was a 33% increase so follow up was advisory. I had an MRI which showed something wrong and I then had a biopsy which confirmed the location of several tumours.
The statistics show that one man dies every 45 minutes & 1 man in every 8 will have PC (1 in every four for black men) I believe the time has come to offer regular (at least every 3 years) PSA blood tests for every man over 50.
Reading Bob & Linda's Facebook group it seems that a lot of men are being diagnosed when the cancer is quite advanced. Ideally (and it's never ideal having PC) the cancer needs to be found before it grows outside the gland. One problem with PC are that there are very few symptoms so I believe that regular testing is the way forward.
https://www.nhs.uk/conditions/prostate-cancer/symptoms/
https://prostatecanceruk.org/prostate-information/about-prostate-cancer/prostate-cancer-symptoms
It's important that every man is aware of PC and the risks of not being tested. I'd also advise mens partners to also be aware of the risks and encourage them to get tested and checked.
It's now been three & half years since I was diagnosed and had Brachytherapy at St Lukes in Guildford. My PSA has been steadily falling and I'm feeling really good.
