Just diagnosed with incurable

User

Posted 28 May 2026 at 22:08

My husband aged 61 has just been diagnosed with incurable pc following annual psa.

He has a psa each year as his father died of prostate cancer .

His psa was 5.9 in March so had mri scan , biopsy, gleeson score 9 and absolute horror told spread to lymph and pelvic bone.

He has started hormone tablets and will have chemo and hormone injections for life. The consultant looked so grim when he told us and my husband asked was it fatal and there was a huge silence. The consultant just said we will hit it hard.

We are terrified . Has anyone else has such serious results but had a positive response to treatment. The consultant gave no reassurance and we are so worried that there is something they see but have not told us that means they know the treatment will not work.

User

Posted 29 May 2026 at 02:36

Very sorry your husband has received a devastating diagnosis and maybe somebody else in a similar position will tell you how they are doing. However, your husband may progress in a quite different way because this is a very individual disease and men can respond very differently, particularly to various treatments and combinations of treatment. When PCa is advanced, it's like fighting a retreating battle so some men find a particular treatment works for perhaps a variable time and then there is a need to supplement or change it depending on their response. So regular testing and assessment is essential. Some men respond better than others to the treatment and associated side effects. New drugs and forms of treatment can slow the advance of the disease. We have had men who have been given a round figure of how long they might live but at this stage it is very much a guesstimate and some of them have greatly exceeded the figure given by their Oncologist. You have mentioned Hormone treatment and Chemo but there are other down the line systemic treatments for which your husband may be suitable, Radium 233 and Lutetium 177 treatments for example.

I hope that with hubbies treatment, you and your husband will still enjoy happy years, albeit with the need for careful monitoring.

Barry

User

Posted 29 May 2026 at 08:22

I’m so sorry you are both going through this. Can’t answer your question but it’s good you’ve found this forum as I’m sure others will comment who have been or who are in a similar situation.

Take care

Debbie

User

Posted 29 May 2026 at 08:39

Hi ,my husband,55 at the time had similar diagnosis PSA 23 4+5 spread to lymph nodes. He also had early chemo and will be on hormones for life . He was lucky to get on a trial so it may be worth asking about if any are around at the moment. His diagnosis was 10.5 years ago. Yes life does change but we’ve now go a new norm . He still works and we go on multiple holidays a year , he believes you live for today ,you can’t predict the future . Hopefully your husband will have the same outcome . Since Gary was diagnosed all those years ago treatments have come on along way ,some weren’t even around then .

Best wishes Debby

User

Posted 29 May 2026 at 08:54

I started on the same road almost 4 years ago although I haven't had chemo yet. Details are in my profile. I prefer the term 'treatable but not curable'. There's a good chance that the first line therapies that your husband is on will provide a lengthy period of remission. The difficulty is that no one, not even your oncologist, knows how long this period will be. Like Merrivale's husband it could be 10 yrs plus.

If you haven't already you might consider having genetic testing of the tumor as some drugs now available target specific genotypes.

The therapy is tough particularly to begin with. Keeping as active as possible helps me cope. Planning things to look forward to also helps positivity. I really hope it goes well for you.

User

Posted 29 May 2026 at 10:07

Hi VWW

I am 69, "treatable but not curable" with Gleason 9 (4+5) Grade group 5, with mets in lymph nodes in pelvis and abdomen. My PSA was 953 in September 2025 but is now "undetectable" (<0.025).

I have been on HT since diagnosis (Zoladex implant 12 weekly) and on Darolutamide daily - both for life. I have just finished a 6 cycle course of chemo (Docetaxel) under the Triplet Therapy approach. I am having discussions about RT in the autumn.

The question of longevity has been posed a few times, and the response always vague (and it will always be that way because of our individual differences). But following the TT approach seems to give good outcomes at 10 years - happy to take that!!!

I am helping myself by eating healthily and trying to be fit and active (not so easy just after chemo though....) and avoid caffeine and alcohol. The side effects of the treatment do take some getting used to. The fatigue induced by the HT is then doubled when having Chemo so recovery seems to take longer and longer after each session - but I have had my last one and I can only get better from now on!!! Looking forward to a trip to Scotland soon to see my grandkids and to enjoy some stunning landscape and really fresh air!

Obviously I am only at the start of the journey but do feel hopeful for the future - it is the only way to look at it. The HT will play havoc with emotions and that is to be borne in mind. But get out there with a goal and make something good happen.

And also take the time out for yourself - the support of our other half is so important, I do appreciate mine a lot (and say sorry a lot as well - HT brain and Chemo brain not a good combination) . It is often said that this is a couples disease....

All the very best to you both

Best wishes - stay positive

CeePee

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