Gleason 9 new diagnosis and pretty scared

Hi there Nimo44,

Firstly you are in the right place for support and great advice. Although you explained the situation so far well there’s a profile page where you can explain details like you’ve mentioned plus any medication or treatments you’re beloved OH is on. This is an anonymous site and we are only here to help but the extra details might help you get the info you need from experienced forum members. Read their profiles too, it will help.

Secondly try your hardest not to google anything if you can. That will frighten you. Life and our bodies are so very different and one man’s issues are not every man’s.

Clearly you have had a rough time and any tests require you to wait endlessly for reports and diagnosis but hang in there it’s just time and generally prostate cancer, the couple’s disease, is a slow grower.

Talk to people, anyone you can be it friends or relations or professional counsellors or us here on this wonderful site. Also be as proactive in sharing each days worries together and soothe your anxiety together, it’s hard to get your head around but if your BOH is quiet he might be keeping in much to much. Communication and togetherness is a big help.

You are not alone. There are people that will help. Help is on the way. The fears you have are real but so to is reasoned experience and knowledge to help you both each time you want it from this site.

Sleep when you can, ask questions when they appear in your head — there is’nt such a thing as a stupid question.

Treatments and trials are there for your BOH if he fits the criteria but until you have a full and final definition of diagnosis and a treatment plan try to stay calm. and a BRCA2 or CHEK2 DNA mutation can be checked by applying to trials specifically for research in familial and hereditary conditions in your DNA.

Lastly, sorry for the bore, but you BOH is young and will have many choices for treatment so remember that you are best placed for good reactions to trials and treatments. Stay together in every step and lean on you new and strong family here on this forum.

Good luck

Speaking very generally, and without medical qualification, even a Gleason 9 diagnosis moves more slowly than other cancers.

About 18 months ago I was in your position, also with a Gleason 9 diagnosis.

It is the worst time. 

However, once a treatment plan comes together you will feel better.

In my case, the spread was not confined to the gland but had spread to just outside into one lymph node. Even so, my consultant put together a plan that has the intent to cure.

This was hormone therapy and radiotherapy, and the indication so far is that the treatment is on track, with an undetectable PSA level.

I, too, had back pain before the treatment, and this became severe during the treatment.

The CT scan, MRI scan and bone scan had all been clear so I had 2 more MRI scans of my lumbar area, which diagnosed my problem as spinal stenosis (wear and tear, basically) with the sudden flare up probably caused by sitting for an extended period when one of the R/T machines broke down. This was not related to either the cancer or the therapy.

In my case, as soon as the Gleason 9 grading was in, I was started on hormone therapy to hold everything in place whilst they worked out what else to do. If that has not prescribed for you, then it might be worth asking about it.

It is worth noting the rate of progress on Prostate Cancer treatment. This is not only new drugs, but better combinations and more accurate radiotherapy.

In the words of football commentators "there is everything to play for".

Hi Nimo44 you are now not alone so try not to Google but ask us anything.  The diagnosis you have described is Very treatable and curable.  This is a horrible time while waiting for results but it will get better.

Hello Nimo44 

A warm welcome to the online Community from me, although I am so sorry to find you joining us - and to the Gleason 9 club from a fellow member!!

As others have said it's very treatable and life goes on - just stay away from Dr Google and stick with those who have "been there - got the T-Shirt".

To help us help you and your OH on this journey can you please add some details of his journey to date to his profile. To do this on your home page click on the chair - top right, then "profile" then "edit". Once you have written something don't forget to save it. (You can read my journey by clicking on my name or avatar). Don't forget to include PSA's and Gleason Scores and TNM staging.

I noticed your post was posted at 3.15 am this morning and if anxiety is affecting your sleep or life in general please do give our Support Line a call on 0808 808 00 00 (8am to 8pm 7 days a week). If you have a "Maggie's" at your hospital - this is a cancer support charity - please do call in there for a coffee and chat.

Please do feel free to ask any questions - nothing is too trivial.

Best wishes - Brian

It is the worst time the full diagnosis and that part was a bit of a mess up with me ,

I have advanced prostate cancer and have been treated since June 2024 ,

I get a little bit of anxiety around 3 monthly checks and stuff ,but hey ho just try and keep positive and hopefully all will work out 

Hi Nimo44

I doubt if spread to bones with a lowish PSA like that.

Having said that PSA is moving up fairly quickly possibly cos of Gleeson 9.

Tumour size is still fairly small though, that's good.

Hopefully they can do the pet scan quickly and start on a treatment pathway soon.

Still looks curable which is good

Best wishes 

Steve 

Hi Nimo, I’m sorry to hear of your husband’s diagnosis  and the impact on both of you. I agree with all the comments you have received so far regarding your husband’s care etc. and so won’t repeat them.

Instead, I will comment from a wife’s point of view!

My world turned upside down when my husband was diagnosed 3 years  and, like you, I was scared silly. What I have now realised is that this is a couple’s illness. Us wives are as impacted as our husbands and we go through all sorts of emotions too: fear of losing them or seeing them suffer, fear for ourselves, grief for the loss of old certainties, anger at the unjustness of it and, for me, the ineptitude of our local hospital trust. I used to wake up at stupid o clock with two words screaming in my brain - ‘prostate cancer’! I also could not stop crying! Whenever anybody mentioned those two words the tears would flow! This was particularly difficult during hospital appointments at a time when we were still wearing masks. How do you mop tears and blow your nose when wearing a mask?

But, it’s not all bad news! As others have said here, although the treatment pathways bring unwanted side effects ( for some men this includes erectile dysfunction), in some unexpected ways , the whole journey has brought us closer together with a realisation that we have to value each other now and seize the day, so to speak! 

our 4 adult children also were wonderful! They are all busy with demanding jobs, mortgages, kids etc. Suddenly the tables turned and they realised that we won’t go on for ever! They have supported us throughout - a phone or video call, a treat in the post, helping with transport to hospital appointments, little outings, visits etc etc.  

However, the reason I first joined this forum was because, locally to us, there was absolutely no support for wives and partners of men diagnosed with prostate cancer. I was even told at one point that women ‘don’t matter’!!! I don’t know how I restrained myself at that point!! Here, women do matter and  I have received all the support I have needed from everybody! 

I do wish you and your husband all the best for this journey that you are both on. We will all be hoping for the very best of outcomes for you and will be here for you to share both the high and low points!

xxx

Thank you so much to everyone who replied it is so kind of you.

tried to have a more rational day but it’s hard 

one thing I’ve been panicking about today is bone spread 

my Oh had back ache since February 

I again made the silly mistake of looking up how fast Gleason 9 might spread to the bones and it said 6-24 months - well out first psa reading of 7 was 13 months ago! 
does anyone know when that timeframe starts? From the very first cell changing? From a tumour forming? We had a clear mri and biopsy just 9 months ago but now we have a 7mm Gleason 9 tumour

i had hoped that given it had not breached the prostate the chance of bone spread was low (even with the backache) but then I read it spreads through the blood stream so maybe it doesn’t have to breach the prostate to reach the bones?

Head is spinning all knowledge very gratefully received 

Hi Nimo44 

Ok it's just my opinion but I still think with lowish PSA and small tumour size it's probably not in the bones.

Current back pain could be down to other things.

Hopefully he can start treatment soon, have they talked about treatment options?

Best wishes 

Steve 

Hello Nimo44 

I am a Gleason 9 (5+4) so that's the high 9 and my initial PSA was 182 on diagnosis. My MRI, CT and bone scan were all clear. This month is the start of my 5 year on my personal journey. Yes I am still on Hormone Therapy, yes I have a bit of back ache after a mile or so of walking but I am 70!!

Remember we are all different and on this journey no "one size fits all".

Facts:

"They found Gleason 9 in the tumor" - but not all of the samples contained cancer.

He has a low PSA.

Your Consultant is 99.9% it's contained in the Gland. He's doing a PSMA-PET scan.

Reading the evidence, the cancer is contained in the gland, the back ache possible the onset of age, he's a low PSA and the Consultant is happy.

My advice, sit back, open a bottle of wine and try and relax. You need to wait for the diagnostic process to be completed and THEN depending on the results a treatment plan can be put in place. I go back to my original post and I honestly think you need to contact our Support Line before the anxiety becomes more of an issue than the cancer.

Best wishes - Brian.