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.