Prostrate cancer - wife

Litterlatters, sorry you are joining our club but welcome. I too am a Gleason 9, but with a spread outside, so having my prostate removed wasn’t an option. My diagnosis was over 6 years ago. 
I remember at first diagnosis I wanted treatment to start immediately and had the feeling that everyday really counted. 
The important and time critical part seems to be getting started on hormone tablets, which immediately reverse the growth of the cancer. These mean that next stage treatment doesn’t need to be rushed, but I am sure others with experience will post here. 
Try and stay positive and keep posting. 
Good luck on your journey to getting cured.  David

Hi

Like David, there was no surgical option for me.  However, when diagnosed, and before being told of the only available option, all I wanted was this 'thing' out of me - but it wasn't to be.

I agree with David. They should start him on hormone tablet - mine was Prostap- which will stop the PC growing. So the 5 month wait, whilst frustrating , shouldn't cause any further problems.

Regards

Stuart

Hi LL

I agree a 5 months wait is too long especially with a Gleeson 9.

They don't seem to give HT together with surgery and I'm not sure why but that would certainly keep it down until time for surgery.

You could ask them about my point and see what they say.

What about PSA and what does the MRI say in terms of size and location.

Regards

Steve 

I agree - they put patients on hormone therapy whilst awaiting surgery during COVID, so your husband would benefit from putting the cancer in the “deep freeze” whilst he waits 

Good morning Litterlatters.

A very warm welcome but sorry that you have had to become part of the family under these circumstances. It would help if you could give us some ideas about the TNM score from the biopsy and any other information you may have as this can help give you more targeted information. Having a Gleason 9 score does mean that the cancer is potentially more aggressive and so the treatment will be more comprehensive in order to mop up any possible spread. With this score it is usual to be put on to hormone therapy which will immediately put a brake on cancer by cutting off it's food supply of testosterone so that would be the first question to ask about. It then gives you time to sort out the next step in treatment. As your husband has been offered a prostatectomy then this says that the experts think your husband is CURABLE which is good news. As far as having the procedure done then make sure that they know you will take a cancellation at short notice or possibly see if it can be carried out at a different venue? 

This is very much a couples disease so make sure that you both keep as fit as possible and have a positive attitude as this really does help. Our oncologist told us that he could do 50%, the other 50% was down to us in terms of positive attitude and lifestyle changes which includes diet. Make sure that you keep a note of all meetings, who you spoke to and their contact details. Two heads are definitely better than one as we all remember different things.

This is a really friendly, helpful group who are willing to share their experiences and help wherever possible. No question is too small or silly as we have all asked them in the past so ask away and I am sure others will be along with their words of wisdom.

Good Morning Litterlatters  A warm welcome to the Prostate Community - we are a very friendly bunch so you are in good company.

I am also a fellow member of the "Gleason 9" club but like David2017 I am on the alternative treatment path. I am almost 2 years from diagnosis and am doing fine so try not to worry too much.

As usual Alwayshope has stolen my thunder again with the best advice possible so it leaves me with little to add. You could apart from saying to the surgeon you will take any cancellation contact your hospital PALS team (Patient Advice and Liaison Service) - tell them you have anxiety about the wait and can they get your husband up the list.

Let's hope you can also get the hormone therapy sorted out.

Feel free to ask any questions you need to - it's our Community and we are with you on this.

Best wishes - Brian.

Hi Steve, I had a 3 month wait this year for my op and was placed on HT whilst waiting, it appears to be different, dependant on which part of the country you live!

Ok Jim, well that's the first time I've heard that but perhaps it does go on quietly behind the scenes.

Hope things going well for u

Best wishes

Steve 

Hi Litterlatters. I had my op Sept 22. I was also Gleeson 9. In the end I had to wait 2 months. I could have had it earlier if another Consultant did the op but I chose to wait for mine to come back from holiday. I was told that if it was going to be a long wait I would be put of HT. When I got my date I asked if that would happen and they said it was not necessary for my my wait. If I was in your shoes I would certainly do some more research and raise the matter with your husband's Consultant.

Good Morning Litterlatters,

I know how you feel. As everyone else said already check if HT is possible while waiting for the op.

The NHS busy we know that. My only tool with that is persistent. Whenever I am presented with long wait I am on the phone to them 3 times a week to see if there is a cancellation. And I tell you there is always a cancellation at the end so I can  bring appointments forward. Sometimes you have to put a fight to keep your loves one alive. I never give up and never accept no when its come to health.

The people on this community are wonderful. They know lots and they are going through the same thing.

Good luck and best wishes from Brighton ( stormy)