The news keeps getting worse

User

Posted 07 Nov 2016 at 14:18

Afternoon all

I had a mpMRI scan two weeks ago. I had a TRUS biopsy last week. I get my full results on Wednesday.

I phoned my named nurse just to ask her about the format of the appointment on Wednesday. She was more forthcoming with information than I had bargained for.

Gleason score not in yet but will be in for Wednesday's appointment.

From the scan, they have initially graded as T3aN1MX. There is significant cancer for a 46 year old and it's in one of the lymph nodes. Nothing showing in bladder, seminal vesicles, pelvic bones or back passage. She said I will need a PET scan, a CT scan and a bone scan. They want to operate but feel it might be too late. It looks like combined hormone and chemotherapy. She said that combination is relatively new - some positive indications from the stampede trial.

It's all a lot to take in.

The irony is, I feel physically fine. No symptoms of anything at all. But hormone and chemo at the same time sounds harsh.

I have no time to delay treatment. It is due to start in a matter of weeks.

Walter

Edited by member 07 Nov 2016 at 16:43 | Reason: Not specified

User

Posted 07 Nov 2016 at 16:51

Sorry to hear your preliminary results , but if it has spread to lymph nodes it is unlikely they will operate I think. My diagnosis was too late with spread to lymph and bladder but they only realized post op. I had zero symptoms from the start apart from very occasional ED and reduced ejaculate. I am in more discomfort post surgery than I ever was pre surgery. I think you need to wait to Wednesday and take someone with you and a pen and paper and listen to the experts. Then you can make an informed decision. Best of luck. We all know how you feel
Chris

User

Posted 07 Nov 2016 at 17:38

Sorry that you are being given this kind of news in phone conversations when you are not prepared. You will need to discuss on Wednesday but if they are recommending early chemo it would seem pointless to do that without hormone treatment at the same time. Neither HT or chemo can cure prostate cancer but the HT will starve it while the chemo damages its core and weakens its ability to replicate. Until recently, chemo was only given to men in the final stages of the disease to make them more comfortable for a short while but recent research has shown that chemo given soon after diagnosis of advanced cancer can make the HT more effective for longer.

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

User

Posted 07 Nov 2016 at 17:48

Sad to read that news especially at your age. On the positive the team are attempting to obtain a clear picture as possible at the beginning of your journey and it's taken treat accordingly. From my experience on here that approach leads to a more successful outcome which I hope is so in your case.

Ray

User

Posted 07 Nov 2016 at 19:29

Hi Walter sorry that you where told on the phone but as Chris says take someone with you ,your team seems to be moving quick for you to give you the best outcome .All the best for Wednesday Andy

User

Posted 07 Nov 2016 at 19:38

Thanks everyone for your thoughts and best wishes. Whilst I was a bit surprised that my nurse told me so much on the phone, personally I appreciate the honesty. I know that wouldn't work for everyone, but for me not knowing is worse than knowing. I'd be annoyed if she could see that information on her screen but make me wait.

I'll let you all know what they say on Wednesday.

Walter

User

Posted 07 Nov 2016 at 19:48

Hi Walter,

Sorry to hear the news is not what you wanted.

I know it's a lot to take in just now but I think you will know what's happening a little better after Wednesday. Try to list the questions you want to ask. I'm sure many on here will provide valuable support to you.

Have you downloaded the "Toolkit" yet, available on the publications pages of this site. It might help.

Try not to worry (I know that's almost impossible) and please remember, if you need to talk, give me a call.

Take care.

Steve

User

Posted 07 Nov 2016 at 21:38

Hi Walter

I posted reply on your other thread. So much for you to absorb in very little time. Obviously the grading should provide a much more complete dX and an informed decision. I had face to face and everything was available. Please do take time to evaluate options however difficult it feels. You seem to be in good hands and a good timescale. All the very best on Wednesday.

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