Hi All, I'm on bits here, was at the urologist today and she gave me a diagnosis i was not expecting.
I suffer from Seropositive rheumatoid arthritis and since January I've been having flare up after flare up. Because of this I have my bloods done pretty regularly.
So i got my bloods done over a week ago, but I asked for a PSA test to be included. I wouldn't have asked for it but a high school friend called me out the blue to say he has early stages of prostate cancer and if he hadn't had the psa done he wouldn't have known.
So i got the results of my bloods back, my CRP markers were through the roof, but so to were my PSA markers, so much so I got a rushed urology appointment.
It was at that appointment today I was given the news that I had prostate cancer. How bad, we've still to find out.
Calm, calm, calm, try not to use Dr Google and stay with this Community. I know, because I was where you are now, 5 months ago. In my case it was blood test, PSA of 32 (now that to me was high), digital exam, MRI - which showed lesion and then biopsy before they would say for definite and grade it. I actually had two biopsies as the numbers did not correlate.
You will be in a tailspin for some time, but if you can take this advice, "one hurdle at a time"
This is a difficult journey and I am sorry that you are here with us, but I assure you, I have read and received the best advice on this forum, rather than anywhere else.
What was your PSA?
I had my first hormone injection 1st May when my reading was 49, having risen from 32 in January. This morning I received my new reading of 0.31 following a test last week. I am looking at it as if they have put my cancer to sleep for the moment, whilst they can attack it.
I have had 2 hormone injections, and i feel the are working already, I've still got scans and biopsies to get, but one day at a time.
I feel I have to get my affairs in order first, so I'll be contacting macmillan and maggies centres to see which on can come and help me through it all.
Hello JamboD, my partner was only diagnosed last week with advanced mestastic PC, with spread to multiple bones, not the best news! He is only 56.
Like you, we are still waiting for some tests to confirm treatment plan but he received a double shot of Degarelix which will hopefully put the wee feckers to sleep while we wait for a longer term plan.
The Urologist was really positive in sharing how advanced treatments are, even for incurable PC, so many treatment options in the bag and we are really hopeful of many many years together. The support and advice on here is amazing and will really help you to make sense of things in the coming weeks and months.
Keep us all updated on your journey, so many people here with a great mindset, full of knowledge too.
All the very best️
Hello JamboD
Welcome to the group although I am so sorry to find you here. You have already had some cracking replies from other group members so I wish you well with your other tests and please do let us know what your full diagnosis is.
I am aware you are already on HT - make sure you have a prescription for Calcium and vitamin D tablets as this can weaken your bone structure.
As to financial advice from Macmillan if you contact our Support Line on 0808 808 00 00 (8am to 8pm 7 days a week) between 9am and 5pm they should be able to put you through to either a financial advisor or make you an appointment.
Please feel free to ask any questions - nothing is to trivial - and you will get a reply from someone who has been there done that.
Best wishes - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
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My husband's initial psa was 1200, so if we were playing Top Trumps, he wins!! Joking apart, once he was diagnosed, he was on a two week referral and once started on hormone therapy, the readings were right down to around what is an acceptable level very quickly.
He is 80 and has many other health problems including having had a stroke last year and now dementia. However, the diagnosis was nearly five years ago and he is still with us.
Gina
Hello there - as someone said to me, sorry you’ve joined our crappy club my friend. I really like KJ911’s message, stay calm. The first little while after diagnosis is a whirl, but try to let each day, or even moment, just be what it is. It’s not easy but stay serene, no amount of stressing will change anything anyway, so why bother? I wasted a lot of energy and emotion being upset after I was diagnosed, even though I’d been expecting it, and yet here I am, six months down the line, and despite the crying and anger I still have the disease! So calm, calm, calm.
This is easily the best support around, keep off Google and personally I’ve found it best to keep away from the Facebook prostate groups, for me they were a real downer.
Follow the advice of your clinicians, make sure you have someone to lean on, keep visiting this forum, and be kind to yourself.
One last bit of advice given to me by a friend who has lived with PC for over ten years, if whatever you are doing isn’t making you happy, ask yourself, “why am I doing this?”. Works for me!
Good luck and best wishes.
Ginger
Hi Ginger , great post although not easy to remain calm when you have been hit by a diagnosis, usually unexpected as well. Like all things life throws at us, our world changes but it still goes on with a ‘new normal’.
Best wishes, David
Please remember that I am not medically trained and the above are my personal views.
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