My husband has Stage 4 Prostate Cancer, Gleeson 9, which has spread to Lymph Nodes.

Hi FFF

I know from personal experience exactly how you are feeling at the moment and have every sympathy for you and your husband at this difficult time.

I too was diagnosed just before Christmas 2017 at the age of 65 and my wife was 59.

My PSA reading was 230 and my Gleason score, 9. Cancer was found in my lymph nodes and also in my hips.

I was immediately prescribed hormone tablets followed by chemotherapy (Docetaxel) which proved successful for about 2 years, following which I was prescribed Zytiga to suppress the growth of the cancer. This lasted for a year. I am now nearing the end of a course (20) of radiotherapy to reduce the size of a tumour but I won't know how effective it is for several weeks.

My next step is to join a trial, several of which are available for suitable applicants. These are not generally available at most hospitals and require a referral by your consultant.

So, what I am saying to you is that there are many forms of treatment available to suppress the cancer and enable you and your husband to lead reasonably normal lives and enjoy yourselves. Weekend breaks have proved a great tonic to us as a change of scenery has enabled us to escape those awful thoughts we all have.

Radiotherapy has a tendency to upset the bladder and bowel due to their close proximity to the prostate but I am surprised that you have been told that your husband will have to learn to live with the side effects. I think that a second opinion would be a very good idea.

Very best wishes for Christmas and the New Year. I really hope that my own experiences will be of some help to you.

Andy.

Hello

like many I’m an incurable, 2016 when I was diagnosed I had chemotherapy, radiotherapy and hormone prostap 3 injections now I’m on enzalutamide.I had the same as your husband, took two and a half years to show bleeding from the rear. I had a colonoscopy which showed I had radiation prostitis. I take iron tablets from the doctor it was for my anemia but has helped with the blood discharge.

I had constant blood tests because of diabetes, but they check my psa as well which after five and a half years has risen a bit to 6.4.

The thing about the toilet visits is just upsetting, your doctor may be able to prescribe something for that. Have they never mentioned chemotherapy or is that to harsh for your husband to bare ? Like Andy has said ask about a trial, there are a number happening. 
keep positive try to avoid spicy foods ( which I love ) see if that helps.

Stay safe Joe

My ex-husband was diagnosed mid-november, stage 4, gleason 8, prostate, bones & lymph nodes, he is 51 and we have five children together, our youngest just had her twelfth birthday.  We havent a clue what all this will mean, he doesnt see the oncologist until mid Jan although he has started hormone therapy.  He moved back in with us but is edging back to staying at his own home, its is difficult to say the least as we have been separated for 7 years (although neither of us have replaced each other).  Im exhausted, this I imagine is just as stressful no matter what age we go through it.  I wish I could give advice but I dont know any, I just wanted to acknowledge your post as I know it means alot xx

Hi Misses O

Relationships and separations even on good terms can be exhausting, although I’ve been married to to a wonderful lady for thirty years plus and known her for forty years, I was married before and although it was not me, we parted ( she was having an affair ) but we still saw each other, mainly because of my daughter,  but I bore no malice. 

It’s obvious you two still have feelings, knowing what he has is a very worrying situation. 
Now the hormone therapy does a few things, it attacks the cancer, bringing down his PSA and helps the prostate. There will be a number of options that he can have, tablets like the one I’m now on enzalutamide or one simuler, chemotherapy, or radiotherapy with one of the two stated previously, or he could ask about any of the new trials that are happening, all of which are very good.

Of course these are his choices, but sometimes it’s better to have two people on a visit so anything said will not be missed. I’ve been fighting this disease for five and a half years and plan to see a few more Christmas’s I’m no quitter, being positive is a big plus, for both of you. I was in a family of three brothers two sisters and know what a handful some of us were, all I can say is your doing a great job managing this, he’s going to be around for a number of years yet and as I keep saying, tomorrow they might have the cure for this thing, if not the day after, be strong I applaud you for coming on here and telling us your problem, a problem shared as the saying goes.

Stay safe

Joe

Andy, thank you so much for encouragement and kind words. Will definately look into trials. We are now planning weekend away for big birthday and anniversary.

Enjoy Christmas and wishing you a great New Year  

Thank you so much for talking about things with me. We were told right at the beginning Chemo would not be option. It looks like trials may be way forward. He hasn't seen Consultant in 2 years. Has bloods done every month at hospital and gets call to update on how things are . Would love to sit down and discuss with him. 

Have a lovely Christmas and Happy New Year  when it comes.

Thank you, goodness what a lovely thing to do, it's tough. You must be a strong lady. I hope you can all have a lovely Christmas and I wish you a very Happy New Year  

Joe, thank you. You are a very positive person. My husband is a total pessimist, myself I am optimist and push back negativity as I truly believe there is always things that can be done and like you hope a cure is round the corner.

1. Have a very Merry Christmas and all the very best for 2022