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Took awhile but we have diagnosis

User
Posted 01 Feb 2023 at 21:23

Just sharing where we are from starting in Sept 2022 with OH with a of PSA 290.  Bone scan clear (phew) CT scan T3b with some lymph node and seminal vesicles involvement.  OH put onto lifetime palliative hormone treatment straightaway (6 monthly injections), just a few hot flushes so far.  OH quite calm in the process while needing to wait for a clear diagnosis which seemed to take so long but I felt relief when the HT started.  Finally a prostate biopsis was done January 2023 which came in at G5+4 = G9.  Diagnosis appointment January 2023 resulted in outcome of locally advanced cancer and next will be oncologist appointment (which is not yet in place).  I worry about the high PSA for just locally advanced PCa but maybe the G5+4 is the reason. Suggesting RT as next option.  So we are T3b N1 M0 and G5+4 with final PSA 264, OH aged 77.  Lucky to have got to that age before symptoms came but we still have some questions.  CT scan didn't suggest anything apart from lymph node involvement apart from possible renal cell carcinoma (hoping talk with oncologist will explain that) but when symptoms started OH also had ongoing consitpation - thinking pressure of enlarged prostate on bowel etc.  I did worry that such a high PSA meant things were worse than T3b but fingers crossed maybe not.  A big thank you for all your posts I have been reading since Sept.  They have really helped me.  I have only just joined to share where we are and to engage more.  

User
Posted 01 Feb 2023 at 22:37
Hi Schubert, that's a pretty comprehensive overview of where you are at; as you are no doubt aware this Forum is pretty amazing and I'm sure some of the more knowledgeable guru's and G9s will be able to answer any questions etc you have got (I'm still learning after just over 2 years!). Must admit that is the first I have heard of "renal cell carcinoma" .

All the very best going forward.

Nick.

User
Posted 01 Feb 2023 at 22:41
Have you seen 'renal cell carcinoma' written down? If not, is it possible that this was a mis-hearing of 'ring cell carcinoma'?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 01 Feb 2023 at 23:27

Hi Lyn, as the biopsy was done later after the CT scan, I noticed it was on the day surgery discharge note.  Not mentioned by urologist and I didn't think to query.  Hoping just a small thing.  At diagnosis meeting the hospital compter system was playing up so access to details was a bit limited....  paperwork stated" there is incidental right renal neoplasm, likely renal cell carcinoma"

Edited by member 01 Feb 2023 at 23:33  | Reason: added detail

User
Posted 02 Feb 2023 at 00:09

Thanks Nick and it helped that everyone said to not overthink and wait until you get a clear diagnosis.  I thought it would be much worse than it was. Once the hormone treatment started and I read how much that will help I felt much less stressed. 

User
Posted 02 Feb 2023 at 01:08
Okay - renal cell carcinoma is most common in older men so do ask about it when you see the oncologist. It might be that, when they looked at the MRI images, the urologist and oncologist didn't agree with the person who wrote that on the medical records and decided that it was fine. Or it might be something that can just be dealt with at some point in the future if it starts to cause a problem.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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