Hello eveyone. I been reading these post on this forum ever since i got diagnosed with PC back in April last year and finally found the courage to post myself. My story is that I recieved a text asking if i want to have a psa test for PC by my GP as they were rolling testing out in the community. I thought i will take one, i didnt have any syptoms so off i went. 2 weeks later the GP came back to me and said my PSA came back at 38.1 and they need to refer me to the Urology. Thats when my journey began, 2 Scans and a Biopsy later with the results being that i had PC with a gleason score of 9 and it was stage 3b. Didnt know what to think what to do time just stood still, as many of you would know. luckly i have had good support from all of the family which help loads. 3 more scan and 2months later i had surgery to remove the prostate and lymph nodes. Everything went well and i Spent 2 month recovering thinking the worst was over. In October i had my first PSA blood test and my level was 0.2, from this i was sent for another PET scan. iThe scan showed that i still have cancer in more lymph nodes. I have been now referred to the oncology center where they have put me on hormone tablets and injection for 2 month and then i have to have 7 week of radiotheraphy in March. This has throw all over the place a i wasnt excepting this at all, but onwards and upwards but its still a struggle thinking about the uncertain future. Thanks for listen.
Hello Acne and thanks for ‘breaking cover’ :) it’s nice to ‘meet’ you.
im sorry to hear that the surgery did not result in a complete cure for you. We all hope we don’t fall into the group where the first line of treatment does not succeed but we all know that this is a possibility - hence our raised anxiety levels every time the PSA check comes around,.
I was scared silly at the thought of my husband having radiotherapy and we were both in quite a state beforehand. However , looking back, it was nowhere near as bad as we feared! I think the trick is to follow the instructions to the letter. These people sure do seem to know what they are talking about!
i hope your next round of treatment goes well for you and resolves the issue once and for all.
please let us know how you get on!
good luck!
Hello Acme70 A warm welcome to the Online Prostate Cancer forum (and the Gleason 9 club!! ).
As you have been "stalking" us since April I don't need to tell you we are a decent bunch, serious when we need to be but with a little bit of humour added.
So basically - Prostate out - all good - PSA rising - onto Hormone treatment and then RT to kill off the little bastards in your lymph nodes. Not an ideal situation, but your team have got your back and the treatment will I presume be with an "aim to cure" and you have your family onside which is great.
It's hard be positive when you have had a setback - but you are doing great -you have the support and you have a plan - with your family behind you -you will be fine.
If you feel you need some extra support -do you have a local "Maggies" centre? Or do you want to give our help line a call (the number's at the bottom of my signature strip).
A bit of house keeping -if you don't mind -will please add your details to your profile - it will stop people asking you the same questions over and over. To do this on your home page click on the chair in the top right corner then "profile" then "edit" and tell us how you got here. You can read my journey by clicking on the icon of the beach. (You don't need to write a novel).
We are with you here so keep us posted as to your progress.
Best wishes - Brian.
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Hello Acme70, nice to meet a fellow T3b Gleason 9.
I was diagnosed over 6 years ago and wasn’t offered surgery but initially had chemo and RT. I was quite worried about the thought of RT, as my only experience had been from other people 30+ years before, but I didn’t have any problem other than the sheer boredom of 37 visits to the hospital. RT does zap your energy, but fairly slowly (keep active but listen to your body) There are lots of possible side effects but probably not worth worrying about as they might not be for you.
I managed to get regular times for my ‘sunbed’ sessions which helped get a very easy bowel routine as I wasn’t offered anything to clear me out (think that might have changed from other comments I have seen here).
The whole PCa experience is a rollercoaster journey but since RT I have had a great few years and still counting. Try and stay positive. Any questions please come back and do update us.
Best wishes, David
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