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

I can completely emphasise with how you are feeling. If you read my bio it gives a summary of what has happened with my husband so far. 
I can’t believe your journey started in April and you still don’t have a plan yet. The waiting is so hard and my husband (like yours) has been taking it in his stride but I am also feeling alone and frightened at what lies ahead. 
We only started this journey in July and he has the bone scan tomorrow. CT abdo/ pelvis has already been done although I have questioned a few times if he needs a CT chest to complete the investigations. Biopsy also done 5 days ago and waiting on these results. 
I am sorry you are going through this too it really is hard. 

Hello worried wife 78, we are going through the same experience as you and several others on this forum.

It is this ongoing cycle of testing, waiting, more testing and waiting that I too are finding so stressful. I take heart from the advice given by more seasoned forum members that this is the hardest part, and that when all the results are in and considered and a treatment plan is underway, we will feel better. 

Scary times for us new to this, but hold on tight to each other...you are not alone x

Hi worried wife 78 , we all know where you are at present and hope you will get some clarity soon.  My thinking is as follows.

The MRI is just like a photo and sometimes the results are inconclusive, usually the experts err on the negative side, so a PIRADS 4 meaning likely to be cancer, but unsure.  Once PCa is found during a biopsy the PIRADS score is meaningless because even PIRADS 5 is only ‘very likely’ to be cancer.  The T3a is confusing as you assume it is either contained within the gland or not, but again without removing the gland and surround) they can’t really be sure, so I suspect T3a has been given as the worst scenario.

So where does that leave you and what do you know.  Firstly the bad news, your OH has cancer.  However the good news is it is Gleason 6 (3+3) and you can be fairly sure it hasn’t spread in just a few months (ignore the PIRADS it is meaningless).  If it has spread outside the gland it is very likely not much and very treatable.

I know you will be anxious until the final scans are in, but honestly these are only to double check that there isn’t more going on.

When you get the results, you need to be clear exactly what the diagnosis is and then what the treatment plan will be, so keep pressing the experts until you are clear on those two points.  Please do come back with any questions and let us know how you get on.

I have read through your reply a few times and I find it really comforting.  I have found myself looking at people and wondering why everyone seems to be ok when I feel like my world is crumbling, b knowing that you felt like that too and how things have got better puts things into perspective.  A nurse rang me yesterday and went trough the results with a fine tooth comb, it’s incredible how dferent two nurses can be.  It seems almost ridiculous how she was talking about her hair for ten minutes before even mentioning Greg’s prostate.  But my husband said she was trying to make us feel me comfortable, he’s used to small talk I suppose.  I have taken so much from what people have said on here and I’m repeating it when I feel how I felt yesterday.  Thank you for your reply, it means much to me right now.  Oh, I’m sorry I stole your name ! When I registered on here I would say I only identified as a worried wife or maybe I should have used spinning out of control, somebody help me wife .  Thank you

At times it’s awful isn’t it.  Like a blood running cold fear.  Then there are other times when it’s just a feeling of, it is what it is.  I have taken so much from what people have said on here and I hang onto them.  One is sit with the bad thoughts for a moment and then let them pass and focus on what is happening now and also, it will become a rear view mirror thing.  Oh god, I hope so. The main one is that everyone seems to say that the tests and waiting is the worse part, so maybe when it’s all laid out it will feel easier.   I can’t seem to see your bio, but I hope the results come in quickly for you.  Come in here and share.  I have found that the hour a after an appointment or result and then the anticipation for an upcoming test or result is the worst and sharing it on here does help x

Thank you for replying.  When I had spiralled yesterday, I managed to get hold of an urology nurse and he explained the results clearly and was so much better than the first nurse we spoke to. He didn’t change the diagnosis or sugar coat anything or tell me it was all a big mistake, which is what I really wanted, but he was helpful.  So I’m glad I chased it up.  I’m so thankful for your response, times when I feel so afraid and lost, it helps x

Yes, this is so comforting, to not feel alone . I am holding onto what everyone says on here that once the results are in and there’s a treatment plan in place, things become more bearable.  Thank you for replying, it means a lot x