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Just been diagnosed and have some wuestions

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User
Posted 09 Jun 2017 at 18:29
Had biopsies about 5 weeks ago, they were positive, MRI and bone scan 2 weeks ago and saw specialist yesterday. Mets in my pelvic and lymph nodes, will be commencing hormone therapy in a couple of days.

So, the last 5 weeks have been very anxious and now I can't really describe how I'm feeling but it's not good. I actually don't feel very well but was wondering if this was as a result of the cancer or psychosomatic but I'm sure Imnot imagining it. Im 53 years old with a 14 year old son. I haven't seen oncologist yet so don't know where it'll be going from here although I've done enough homework to know all the options.

And responses most welcome as I am totally bewildered just now. Nick

User
Posted 09 Jun 2017 at 22:18

Hi nick and welcome from me , we were in the same position 18 months ago and to say our world fell apart is an understatement ,Gary was diagnosed PSA 23 Gleason 4/5 with lymph node involvement at the age of 55 . After all the results were in he went onto hormone tablets then 3 monthly injections which reduced PSA quite quickly .Chemo had just been passed to give as first line SOC so he had 6 sessions 3 weeks apart which thankfully went with very few side effects ,in fact he still went to work everyday ,Gary then went onto the stampede trial involving two drugs which he is still on today with few side effects mainly fatigue and still working .so please don't despair I know it's hard with young children ,we have 4 but a lot older so it's easier to discuss with .once your treatment starts and you get some results it does help .As blueytrew suggests maybe ask about abiraterone ,this is one of the drugs Gary is on with enzolutamide and for the last year his PSA has been 0.01 ( undetectable) I wish you and your family well and please ask any questions as there are plenty of fantastic people to help and give advice on any subject
Best wishes
Debby

User
Posted 10 Jun 2017 at 09:21
Hi Nick, I would recommend you look up ELPCSG. They are a support group set up in Edinburgh and the Lothians by men with prostate cancer. I attend their meetings at Maggie's in Edinburgh, they also have a buddying system whereby if you contact them you can be put in touch with someone who has been in your position to talk through what could be a treatment path for you. It may be just talking to someone else living with prostate cancer will be helpful.

The buddying system was very useful and much appreciated when I was diagnosed in 2015.

I wish you all the best, Ian.

Ido4

User
Posted 09 Jun 2017 at 21:09
Hi Nick

Welcome to the most helpful site and the most supportive. Can I suggest that when you se the oncologist you ask about abiraterone, this seems to be helpful when treating newly diagnosed people and most effective.

Good luck

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User
Posted 09 Jun 2017 at 21:09
Hi Nick

Welcome to the most helpful site and the most supportive. Can I suggest that when you se the oncologist you ask about abiraterone, this seems to be helpful when treating newly diagnosed people and most effective.

Good luck

User
Posted 09 Jun 2017 at 22:18

Hi nick and welcome from me , we were in the same position 18 months ago and to say our world fell apart is an understatement ,Gary was diagnosed PSA 23 Gleason 4/5 with lymph node involvement at the age of 55 . After all the results were in he went onto hormone tablets then 3 monthly injections which reduced PSA quite quickly .Chemo had just been passed to give as first line SOC so he had 6 sessions 3 weeks apart which thankfully went with very few side effects ,in fact he still went to work everyday ,Gary then went onto the stampede trial involving two drugs which he is still on today with few side effects mainly fatigue and still working .so please don't despair I know it's hard with young children ,we have 4 but a lot older so it's easier to discuss with .once your treatment starts and you get some results it does help .As blueytrew suggests maybe ask about abiraterone ,this is one of the drugs Gary is on with enzolutamide and for the last year his PSA has been 0.01 ( undetectable) I wish you and your family well and please ask any questions as there are plenty of fantastic people to help and give advice on any subject
Best wishes
Debby

User
Posted 10 Jun 2017 at 09:21
Hi Nick, I would recommend you look up ELPCSG. They are a support group set up in Edinburgh and the Lothians by men with prostate cancer. I attend their meetings at Maggie's in Edinburgh, they also have a buddying system whereby if you contact them you can be put in touch with someone who has been in your position to talk through what could be a treatment path for you. It may be just talking to someone else living with prostate cancer will be helpful.

The buddying system was very useful and much appreciated when I was diagnosed in 2015.

I wish you all the best, Ian.

Ido4

User
Posted 10 Jun 2017 at 09:23
http://elprostatecancersupport.co.uk/

Hi Nick,

The site for ELPCSG is listed above.

Regards,

Ian

Ido4

User
Posted 10 Jun 2017 at 10:50
I have assumed you are in the Edinburgh area from your title. Sorry if I got that wrong. Ian.

Ido4

User
Posted 02 Jul 2017 at 15:48
Hi Nick, how are things going? How are you coping on hormone therapy? I've been thinking about you and it is a few weeks since we heard from you. No pressure to respond just checking in, Ian.

Ido4

 
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