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User
Posted 25 Jan 2018 at 22:20

Hi Everybody

 

New to this forum and looking for some hints and tips as to coping with my diagnosis. I am a fit and active 66 year old but noticed some increasing need to urinate and slower flow about 6 months ago; I put this down to getting older but in November visited my GP. He sent me for a blood test and it came back with a PSA of 30! He did a DRE and found some hardening on one side, told me it was cancer and sent me to the Urologist. After a further DRE I was sent for Bone, MRI, and Biopsy. Saw my consultant yesterday who told me it has spread to the bones and I have a Gleason Score of 8. He has put me on Bicalutamide tablets for two weeks to be followed by a course of injections every 12 weeks. He has said once the PSA is down, after about 8 weeks, the oncologist will see me and decide on whether to give chemotherapy. The prognosis is that it can be contained for a few years but not cured. This is quite scary stuff and feels a bit unreal since I feel well apart from the urinary symptoms. I would be grateful for any help or advice and suggestions for any questions you think I should ask. Thanks Steve S

User
Posted 26 Feb 2018 at 17:57

Hi Steve,

I was a G9 with mets in bones and PSA 294. Have been on HT for almost three years and had chemo and Bicalutamide and now on enzulamide. I haven't felt really unwell through the whole process which is annoying as I felt I should be.

Your last bit about it about being contained but incurable is always a hard one to get round your head and its taken me along time to comes to terms with it. Yes that's the bare fact but there are many people on the site with 10 or more years experience and still going strong. I decided iam going to be in this group and get on with my life, No radical changes but better here and there but still enjoy myself - with the odd bout of why me!

you can look at my profile and PM if you wish.

regards

Steven

User
Posted 26 Jan 2018 at 00:41

Hi SteveS
You are just one year older than my husband. He was diagnosed in December 2017 with PCa nd a Gleason of (4+4) 8, PSA 210, T3+, N1 M1b. That’s it has spread to bones and lymph nodes. He was not symptomatic and it was picked up after routine blood tests. He has had Bicalumatide nd then Prostap injection. We are going to first Oncology appointment next week.
We have only asked questions about HT d spread of disease so far. I think Onco will give us moe detail of the diagnosis. There is a tumour below the left kidney which is causing probs. Still been a difficult couple of months to say the least.
Maybe after Tuesday I might be able to offer more help as you seem to be at a similar point to my husband, except it has only spread to bone. lol get back to you next week if I have anything I think might help.
Sorry you find yourself in this situation. On Here there are so many really knowledgeable people on here who will give you lots of support. We are at the beginning of our journey but happy to share along the way.

User
Posted 02 Feb 2018 at 15:52

Hi Steve,

I found myself in a similar situation around 18 months ago. No symptoms other than urinary but had a Gleason 9 and PSA of 67. Bone scan showed spread to bones. I started with the same tablets as you prior to HT in the form of Triptorelin initially every 4 weeks, then every 12. I had 6 cycles of Docetaxel which finished exactly a year ago. My PSA showed a steady drop then once chemotherapy started there was a sharp drop until it got to undetectable where it has been since May last year.

I get bouts of tiredness and my muscles ache a lot but this is due to treatment not the disease. On the whole I feel pretty good both mentally and physically.

Happy to pass on any info you might need - if I know the answer!

Good luck

Dave

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User
Posted 26 Jan 2018 at 00:41

Hi Steve, either download the toolkit from this website or call the phone number at the top of the page and they will send you a copy in the post. It is full of really helpful information about the different levels of diagnosis and the various treatments, side effects, etc.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 26 Jan 2018 at 00:41

Hi SteveS
You are just one year older than my husband. He was diagnosed in December 2017 with PCa nd a Gleason of (4+4) 8, PSA 210, T3+, N1 M1b. That’s it has spread to bones and lymph nodes. He was not symptomatic and it was picked up after routine blood tests. He has had Bicalumatide nd then Prostap injection. We are going to first Oncology appointment next week.
We have only asked questions about HT d spread of disease so far. I think Onco will give us moe detail of the diagnosis. There is a tumour below the left kidney which is causing probs. Still been a difficult couple of months to say the least.
Maybe after Tuesday I might be able to offer more help as you seem to be at a similar point to my husband, except it has only spread to bone. lol get back to you next week if I have anything I think might help.
Sorry you find yourself in this situation. On Here there are so many really knowledgeable people on here who will give you lots of support. We are at the beginning of our journey but happy to share along the way.

User
Posted 26 Jan 2018 at 13:30

Thanks Lyn. Have downloaded the fact sheets which are really helpful if a bit daunting! i now have more of an idea of what questions I should be asking.

Susie W. Thanks for taking time to respond and share. Please let me know how you get on and give my best to your husband. Really impressed by the on-line community. Stronger together.

 

User
Posted 26 Jan 2018 at 20:08
Hi Steve welcome to this site which has helped me enormously to understand my Dad’s diagnosis and also to offer valuable support. I would highly recommend contacting the nurses from PCUK if you need to talk to anyone or have any questions (along with using this forum). They have been absolutely amazing and are always so kind and caring. Good luck with your appointments and treatment. PenP.
User
Posted 02 Feb 2018 at 09:48
Hi SusieW Just wondered how you got on at your appointment? Cheers SteveS
User
Posted 02 Feb 2018 at 15:52

Hi Steve,

I found myself in a similar situation around 18 months ago. No symptoms other than urinary but had a Gleason 9 and PSA of 67. Bone scan showed spread to bones. I started with the same tablets as you prior to HT in the form of Triptorelin initially every 4 weeks, then every 12. I had 6 cycles of Docetaxel which finished exactly a year ago. My PSA showed a steady drop then once chemotherapy started there was a sharp drop until it got to undetectable where it has been since May last year.

I get bouts of tiredness and my muscles ache a lot but this is due to treatment not the disease. On the whole I feel pretty good both mentally and physically.

Happy to pass on any info you might need - if I know the answer!

Good luck

Dave

User
Posted 26 Feb 2018 at 10:22

Hi 

Had my first injection of Decapeptyl at 22.5 mg which lasts six months, no major side effects so far. Now have seen my oncologist who was very helpful. I am lined up for 6 chemo sessions of Docetaxel  starting on 9th April. I have also agreed to join a STAMPEDE Trian she is running on the effect of Metformin. So at least I feel I now have a plan and can organise my life around it. Still feeling fit and well.

User
Posted 26 Feb 2018 at 13:31

On the Metformin trial as well - Arm A so control group not taking the drug. Hope you do as well on Decapeptyl and Docetaxel as I did.

All the best

Dave

User
Posted 26 Feb 2018 at 17:57

Hi Steve,

I was a G9 with mets in bones and PSA 294. Have been on HT for almost three years and had chemo and Bicalutamide and now on enzulamide. I haven't felt really unwell through the whole process which is annoying as I felt I should be.

Your last bit about it about being contained but incurable is always a hard one to get round your head and its taken me along time to comes to terms with it. Yes that's the bare fact but there are many people on the site with 10 or more years experience and still going strong. I decided iam going to be in this group and get on with my life, No radical changes but better here and there but still enjoy myself - with the odd bout of why me!

you can look at my profile and PM if you wish.

regards

Steven

User
Posted 27 Feb 2018 at 09:50

Thanks Dave and Steven.

Aiming to stay active and positive, anyway my wife won't let me be anything else!! https://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

User
Posted 27 Feb 2018 at 14:35

😄 👍👍

User
Posted 26 Mar 2018 at 11:15

Hi

Just had some positive news that I have been accepted for the Metformin Trial and will start taking the medication along with my chemo from the 9th April. Reading some positive stuff regarding Metformin so I'll keep you posted as I go along.

Cheers Steve

 
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