I feel so alone and frightened

Bless you it can be a lonely path at times and it doesn’t sound like your getting any support from the medical professionals there, if they have changed your husbands original diagnosis they should at least have the decency to fully explain it to you , unfortunately I suffered with the NHS also with horrendous communication and missed leadtimes at every step of the way in the end I took the financial hit and went private , just to save my sanity 

Do you have the contact details of the CNS nurse to be able to chase?

if not maybe try one of the nurses off here or the nurses off the prostate cancer Uk website

other option and not one you should have to do but have a look at your local private hospitals and see if any of the urologists in you NHS hospital consult privately , if so they should be aware of your husbands case and for between £150-250 you could make an appointment and speak in a more relaxed and unrushed environment , I had to do this to get my results 

wishing you and your husband all the best

Nick

Hi,

this is definitely an unusual diagnosis.

From the countless things I've read, and vids I've watched about  Prostate Cancer it's virtually unheard of for Gleason 6 to metastasize (break away and spread beyond the primary tumour in the Prostate gland), so chances are the primary tumour itself has grown and breached the glands edge but the Cancer cells don't have the aggressiveness/ability to break away and spread elsewhere, so the Cancer cells will stay in situe. I've actually read they treat gleason 6 more like a chronic disease.

I hope all goes well moving forward 

All the best

Jay

From one worried wife to another!  Where you are now is where we were 3 years ago! I am no prostate cancer specialist but, as I understand it, your situation is as follows:

The PIRADS score is what is gleaned from an MRI scan and reveals the likelihood of cancer being present ( 5 being its almost a certainty) . It also shows to SOME EXTENT whether the tumour has spreads beyond the prostate locally ( say, into nearby tissue) . I think, but I am not sure ( others will be able to confirm) that it also shows any spread to other parts of the abdomen such as lymph nodes.

The T3a is exactly the same as my husband. They told us they were not sure from the scan whether the tumour was just bulging against the prostate wall or had broken through. They said that they always stage to the highest probability so he was designated and treated as T3a - local spread outside of the prostate but not involving the seminal vesicles or local metastatic spread - ie potential for the curative pathway ( good news for you!!)

The Gleason score is achieved by looking at the cells in the tumour - the biopsy cores taken. The higher the score the more aggressive the tumour. My husband was 4+3 =7  - so more aggressive than your husband. 

as the MRI scan is of the abdomen only, the medics then need to make sure the cancer has not spread to other parts of the body. PC is notorious tor moving to the bones - hence the bone scan! We were never offered a CT scan but I wish we had! We were in such a daze at the time that we didn’t realise that this ( and PSMA scans) are routinely offered elsewhere to rule out spread across the body.

i did ask if the biopsy would have involved taking cells outside of the prostate and in the surrounding tissue. They said yes and that they had not found any cancer cells in those particular samples. I questioned why, then, was he still classed as T3a and they said that because there was uncertainty with the MRI and the samples taken might have missed lurking cancer cells. Therefore he was still to be treated as t3 a as you only have one shot with RT and HT ( his chosen treatment) and it is better to risk over treating rather than under treating.

the waiting time for the bone scan and the results was the straw that almost broke the camels back! I was a total wreck! Looking back on the whole experience and still reading posts like yours, I feel intensely angry and frustrated by the lack of support for spouses and partners of the patient. We went to a local support group and mentioned this and was told, ‘that is a woman, women don’t matter’ by the head of this group. Later a consultant said that wives are not an important consideration . Both of these people were men! We don’t attend any more!

so, where are we now? My husband had 20 factions of RT accompanied by 18 months of abject misery ( for both of us!) on HT. I know a lot of men have minimal side effects or not many of them but he really suffered) He had a rtelephone consultation with the oncology consultant this morning. His PSA is 0.22. He is feeling good after stopping HT in May 2024. He has osteoporosis because he was not prescribed vit D and calcium at the outset. He has ED - he can’t take viagra type drugs because of the extra risk of blood clotting ( his past medical history precludes this) He has tried a vacuum pump and this did not work for either of us! ( glad it was provided on the NHS). He will be referred back to to urology for this. Oncology will now put him on to 6 monthly PSA remote monitoring. He will be recalled if the PSA rises above 2.0 but has a70% chance of complete cure v 30% chance of recurrence - we were told but - most importantly - he is still here, still active, feels well and is enjoying life!

So, where am I now? I am relieved that all seems well now but there is always the knowledge that cancer is lurking in the dark corner of the room. I feel the whole experience of goung through the experience has left me somewhat traumatised - especially as those first few months were so very dreadful ( our service from urology was outrageously bad although oncology was brilliant). I don’t think I will ever quite be able to put the experience out of my mind but I do feel that the whole experience has made us better people - both in our relationship with each other and our understanding and appreciation of other people, life, the universe and everything. I try to push the bad thoughts away and enjoy the here and now rather than the ‘what ifs?) that might never happen and so a waste of energy!

I hope that I have not bored you with this over- long response and I really hope it helps you feel less alone in this nightmare and gives you the encouragement and hope to hang on in there. Once the tests have been completed and treatment plan sorted it all does settle down. You have light at the end of the tunnel - keep focussed on that! Xxx