Recent Diagnosis

Hello  AMacG  and welcome from another wife. Worriedwife always expresses things a lot better than I can so I tend to stick more to practical comments. The Gleason 9 means that the cells taken at the biopsy look abnormal in comparison to a normal prostate cell which puts your husband into the higher risk group for a POSSIBLE recurrence at some time but don't forget that the radiotherapy will actually be destroying these cells. This risk grouping means that the cancer will be treated in a more aggressive way but what with will be determined once all the test results are in. The bone scan is a normal part of the diagnosis procedure, usually to rule out bone mets rather than rule it in. I see that you are going to be looking up the TNM but also the initial PSA can supply information, as can the type of prostate cancer your husband has as well as if there are any concerns about the type of cell. I usually point people in the direction of a free book which you can download which supplies information on tests and treatment.

https://issuu.com/magazineproduction/docs/js_prostate_cancer_guide_for_patients_ezine

Also, you initially deal with a urologist but it is a team, including the oncologist, who will assess all the results and may have a different recommendation to the Urologist so keep an open mind. 

From what you have said the first step is Bicalutamide tablets which are given to counteract the testosterone flare caused by the first injection. This stops the cancer from having access to its food no matter where it is in the body and gives the experts time to sort out the best treatment for your husband. 

You are asking about things you can do. This is very much a couples disease so look after yourself as it can take it out of you both physically and mentally. Encourage your husband to get as fit as possible - he will tend to lose muscle mass so resistance and weight bearing exercises are good. If he is worried about developing boobs then speak to the doctor as there are tablets he can take or the breast buds can be irradiated to stop it. Men have a tendency to put on weight round the middle so diet can help - plenty of fruit and veg, chicken, turkey, fish but limit processed foods, red meat and animal fats, sugary food. During treatment you will probably be advised to avoid caffeine, alcohol and fizzy drinks so exploring alternatives now could help.

With luck your husband will be on a curative pathway so one thing he needs to consider is his penile health - basically use it or lose it. There are tablets which will help maintain the blood flow to the penis but it also helps with manual stimulation (some men find a pump helpful).

You are on a steep learning curve at the moment and please be careful when using Dr Google because a lot of the information is historic. Protocols and therapies have developed considerably in recent times and there is a lot more in the pipeline so be positive, take each day as it comes and remember that you can still have a good quality of life WITH cancer. Please ask any questions and we will try and help.

Thank you.  My husband is freaking out about the forthcoming side effects but, like you, the alternative isn't worth thinking about.  Let's hope that the effects are not too drastic as I know it will affect his confidence massively.  I suppose its one step at the time for now and like you said earlier today is important and tomorrow can take care of itself. x

Thank you so much for your detailed response.  I feel every day is a school day at the moment and I'm trying to learn so much about it whilst also taking in the shock factor.  The way yourself and others here have explained things is helping me to get my head around it more than what the consultant said because it all seems very technical (and medical) at a time when you need lay man terms.  We are still unsure of who we need to go to for advice on things like the medication for the 'boobs' and now the penile health too.  Would that be the oncologist or the urologist or our GP?  It seems crazy to need to ask these type of questions but it really does feel like a minefield where you're too frightened to step on a bomb!  Thank you again Ax

The GP is your first port of call to discuss these things with.

Hi again AMacG , I told you others would be along!  We have all been where you are now and can feel your pain, but it will get better.  Once on HT you don’t have any panic, so just deal with things day by day.  Please feel free to ask any questions and maybe your OH can ask some too or even join on his own account.  David

Thank you 

Thanks David.  I do feel weirdly ‘safer’ talking to yourselves.  It makes you feel not so alone.  It’s been helpful already. 

There are loads of others who can help, so just ask.  You are not alone.  David

I'm a wife whose husband was diagnosed just before Christmas 2023. I fully emphasize with all the emotions you are experiencing at the moment, it is a very scary place to be in but as plans and treatments are put in place life does return to a more peaceful place.  My husband had four months of hormone treatment ( tablets and then monthly Inject tions )  He had no side effects at all until after the end of four weeks of radiation ( upset tummy and urinary retention)  BUT these effects passed and his life has returned to normal, playing golf 2/3 times a week. His PSA level has dropped nicely so we are feeling positive 

I just wanted to share a positive story and send you and your husband the warmest wishes for a positive journey ahead of you

Sending you a virtual hug! 

Firstly I hope your husband is well.  Thank you for reaching out and sharing your experience.  It feels very familiar at the moment! It’s good to hear from others that are helping us see there is light at the end of the tunnel.  Thank you. X