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DIAGNOSED D BUT WAITING FOR BONE SCAN RESULT

User
Posted 31 Jul 2016 at 23:58
My hubby was diagnosed with PC tumour abutting prostate but not going through the capsule which I thought would be a T2, this was the email from the Macmillan nurse 2which said this tob me. Anyway .!!!

So when the consultants copy letter finally arrived at my house which was sent to our GP It seemedvto read differently in that it was a T3a which sounds more aggressive. and sounded like it had gone through the capsule the letter said Gleason 3+5 =8. and worse case 5+3 =8. not sure what second numbers mean onlynthe first meant they found stage 3 and 5 biopsies more were 3s ? SO what do second numbers mean? He had a PSA 3.7 a bone scan was then booked, hubby should get bone scan results this week , they did two scans and he had the dye injected. Im worried as for a while he's been itchy in the scrotum area, also his legs/hip and side ache he's not sleeping well as he was put on hormone tablets on the 21/7 when he was told he had PC. I am terrified the severe itching is a symptom of lymph or liver involvement . He isn't sleeping and the hot cold flushes and nausea dont help I myself was on hormone therapy for BC and had really bad symptoms like this. The medical panel said surgery not an option. For my hubby as he had 3x cabg and lung op, I was hoping to see Dr again for scan results but we were told to ring the secretary and request a dr phone call?? Seems mighty strange is this normal practice these telephone appointments?

So far the Macmillan nurses have been no support and even told my husband they had spoken to me,!!! I thought things were supposed to be confidential ? I now I feel I can't ask them anything incase this nurse says I've already asked something to my hubby again. he hates talking about it much so I need to ask myself as I feel I need to know he doesn't ask the right questions so what to do!!!!!!

User
Posted 05 Aug 2016 at 22:54

Simply Red

I think your post must have gone under the radar, it is not like the community not to answer a post, I think it comes down to when the new conversation is moderated.

I had CT and bone scans with dye but do not recall any symptoms your OH is having and have not had HT so cannot help there, I am sure now your post is near the top someone will be along to answer you queries.  

Gleason 3+5 is better than Gleason 5+3. if you search the box right at the top you should find a full explanation.

I know the NHS is under pressure but I hate telephone consultations, my GP has a philosophy "do anything to keep the patients away from the surgery"

Thanks Chris

User
Posted 05 Aug 2016 at 23:11
I chased and phoned and emailed and demanded the consultant phoned my OH

He did yesterday and I'm happy to report he told us the bone scan is clear. All they plan to do now is continue with HT and injections and

So far we only have a November telephone call appointment.

The MacMillan team never got back at all so I'm so glad I found this website as I've got more support on here than anywhere

Thanks

User
Posted 06 Aug 2016 at 09:19
With the hospitals I have found the PALS( patient advice and liaison service ) to be helpful.

If you email your concerns and also copy in the McMillan nurse then you should get action/ support.

They usually have a desk at the hospital and a telephone number.

Have a look at the hospitals website

Good luck

 
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