Hello ...

Hi Jess40 - there are good people on here with similar diagnosis to your husband and they’ve been around more than 7 years (and are still doing fine) so don’t despair.  They will no doubt be along shortly…

in the meantime, let me say that your consultant had no right to estimate 3-4 years terminal.  I suspect this information is based on statistics from older treatments- possibly from 10-20 years ago.  Today’s treatments are COMPLETELY different and way more advanced.  They continue to discover new ways of halting the spread of this cancer.  Please tell your husband this.  There is much hope.  There is much, much more life yet for you both to enjoy.     AW

Hello Jess (Jess40) 

A warm welcome to the Macmillan online Prostate Community, although I am very sorry to find you here under the circumstances. I am Brian one of the Community Campions here on the Community and am in the 4th year of my personal Prostate cancer  journey.

Your husband has been started on something called "Triplet Therapy" it's intended to hit the cancer hard and fast and to stop it in it's tracks, stop the spread and kill it off. It's a fairly new approach.

Being a man a can see your husband behaving how he is doing - we are used to being the macho types and not ill and as I thought Prostate Cancer was something other men got - how wrong I was.

I see you have joined the incurables group, we have two other groups you may wish to join for support and here are the links to these:

 Carers only forum and Chemotherapy forum 

As for your own support, please do contact our support line on 0808 808 00 00 (8am to 8pm 7 days a week) they will be able to help you in these circumstances.

I was going to mention the prognosis but Alpine Wanderer has "stolen my thunder" by his post above - we now need to get your husband "on side".

Please do feel free to ask any questions - however trivial - we are all with you here.

Best wishes -Brian.

Hi Jess, I'm new here too and  recognise much of what you're saying in our circumstances. I'm sorry for everyone who finds their lives totally overturned by cancer. One of my biggest frustrations, like you, is my partner not doing the few things he can to help himself and I feel like I have to nag ( or as I put it - Repeatedly Respectfully Remind) him to do them. But hard as it is, I've chosen also to let him choose his own path through this but I also highlight the positive options and benefits . My partner (65, diagnosis confirmed Xmas eve)  feels cancer has robbed him of his power and that is really hard for him to come to terms with at the moment and he too doesn't really want to know much. I'm pleased you've signed up here - a safe supportive space for everyone. x

Good morning Jess40 and welcome from another wife whose husband was diagnosed with advanced metastatic prostate cancer in July 2020. He is still going strong albeit with a few bumps along the way. The treatment your husband has been put on is called Triplet Therapy which consists of the injection, chemotherapy and Darolutamide which has been shown, through trials, to be effective for many men in putting the cancer on the back burner for a while and allowing them to have a good quality of life. Your husband's reaction is not uncommon and you are obviously doing as much as you can to support and encourage him but ultimately it is his decision whether he continues with the chemotherapy. Can I suggest you call the Macmillan helpline on

0808 808 00 00

as they might be able to help you but more importantly your husband if he will engage with them.

Antidepressants can help but they do take a little while to work. A positive attitude and exercise are important in fighting this cancer so when he gets over these few days then try and get him out of the house, even if it is just for a cup of coffee or a walk round the block. Also do you have a Maggie's near you - it is a drop in centre which many hospitals have for anyone affected by cancer, and that includes you as you can't do it all on your own and you need to look after your own health as well.

https://www.maggies.org/our-centres/

I know Brian Millibob our community champion will be along soon to offer you help soon as well.

When my husband was first diagnosed we also thought that this is it and it does take a little while to get over the initial shock of the diagnosis but our oncologists said from the start that they can do 50%, the other 50% was down to us in having a positive attitude and with lifestyle changes. The other thing which always boosts us is when they say they still have plenty more tools in the toolbox. There are new protocols and treatments being developed all the time so the prognosis you have been given can be misleading, it all depends on how the cancer reacts but also how your husbands body copes with it. We made a conscious decision to enjoy the good days as much as we could. We are still fighting and the good people on here pick me up when I get the wobbles so I hope we can the same for you. 

Hi again - a quick description of triple therapy.  The chemo kills systemically, the Zoladex stops most of the production of testosterone (food for the cancer) and the D- is Daralutamide, which stops the receptors on the cancer cells from accepting any of the remaining testosterone.  Clever, eh?  So that’s why the 3-4 years life expectancy should NEVER have been said.  Tell your hubby to stick with it and he should come out the other side, like many on here.

oh, and I have a good friend called Richard who was diagnosed with a PSA of 2,016 (yes: not the year, this was the number!). He had triple therapy last year and feels fine now.  His PSA is currently 0.01.  Enough said.

AW

Oh! Thankyou for your kind replies. Honestly, tears of relief.

Talking with friends is one thing, but all of you have the experience, and I thank you so much. 

My OH has grown up children from a previous marriage. They're good people, but are struggling with all of this too. It's one thing off-loading, something different to get information from people who really know.

I feel better to face the day now. He is still in bed asleep, but I guess resting is the best thing at the moment.

Thanks again x

One of the problems in the diagnostic stage was that his PSA reading was very low. This, we've now learned is because the cancer had already pretty much destroyed his prostate gland :(

Good. Thanks for replying!  Please emphasise the fact that his treatment (Triple therapy) is new.  The statistics for life expectancy are based on much older treatments (the evidence takes years to collect and has to be analysed then researched and published).  A lot of it is based upon older men being found with terminal prostate cancer.  Nowadays we have younger men (like your husband) being found, but earlier in the stage 4 cancer.  
one other thing:  the new thinking is that with these new treatments it is NOT “incurable” or “terminal” - it is “treatable”.    Let’s face it, all humans are “terminal”!!!   Most prostate cancer patients die with prostate cancer, not of it.  I’m glad that our advice (based upon lots of experience) has brightened your day and brought some perspective.  I’m sure that there will be others (Worriedwife for instance) who will be along to add their own advice.  In the meantime, stay strong, read these replies out to your hubby over a cup of tea when he wakes, and start to FIGHT the cancer.  Mind set positivity is vital .  Laugh in the face of the devil.      AW

I’m not sure that statement is correct at all.  Some prostate cancers are “low secreters “ - it has nothing to do with the gland itself.  Prostate cancer does not “kill” healthy prostate cells .    AW

Hello Jess40, welcome to this forum which, as you may already have seen, there are probably as many wives and partners posting as there are men with prostate cancer!

the first weeks and months are hell! The whole world turns upside down and all known certainties and plans for our lives together disappear! Looking back, I now see that not only was I frightened about and for my husband, I was also grieving for a lifestyle which we had envisaged for ourselves and had been taken away from us. Like your husband, my husband gave up and withdrew within himself. We went to umpteen appointments with which he refused to engage or even talk! He refused to discuss his diagnosis with me, too! I felt so very lonely as we had always shared our problems and troubles before. 

i, on the other hand, could not stop the tears!! I think I cried enough to fill a reservoir! I needed to talk and I needed some reassurance! That’s how I found this forum! It saved my sanity!

Any cancer treatment has its side effects - immediate and longer term. However, perhaps you can reassure your husband by passing on the comments you have already received which show that, although current medical knowledge cannot cure advanced prostate cancer, they can manage/ treat it for many years. Also, there is much research going on so there will hopefully be more and better treatments coming down the track.

my husband has a strong family history of breast and prostate cancer. 60 years  or so ago, his grandfather died of prostate cancer ( we think - he had all the signs and symptoms but cancer was a taboo word in those days!) with no treatment offered to him. 20 years ago, my husbands father died of prostate cancer. He was offered the only treatment available - first line hormone therapy. This bought him 4 extra years! Some 10 years ago, biopsy was carried out ‘blind’ and without MRI scans in advance. It was an unreliable biopsy through the back passage which introduced the risk of sepsis and could only reach one part of the prostate. Now, men have scans before template biopsies ( much more reliable and far less risky) and  multiple treatments to be brought out of the tool box when one treatment begins to fail in the 2 and 1/2 years since we started our journey, the triplet therapy your husband is having has been introduced and showing very encouraging results. Progress is still being made but not yet reaching long term survival statistics because of the short time they have been used!!!

At one point my husband said he was not going to continue with treatment. He had not discussed this with anyone - not even me! I asked him where my thoughts and feelings figured in this decision and he said, ‘nowhere’! That hurt! It sounds to me as if your husband is taking a similar approach. Looking back, I think my husband was just so very frightened.

so, where are we now? He is much more relaxed and talks about his diagnosis, treatment, side effects etc. his treatment is completed but his PSA has had a worrying bounce since finishing hormone therapy. We live for now rather than for tomorrow. We appreciate each other a lot more! 

on the downside, he seems a lot older, has just been told he has osteoporosis due to the treatment, struggling with ED BUT he is still here and enjoying teaching our grandson how to drive, doing wood work, walking, gardening, going out and on holidays. He is a bit slower but has a good quality of life . I did throw my toys out of the pram the other week when we had a heated discussion, though! I told him it was time for him to take responsibility for his medications, appointments etc etc ! It was said after a row and in complete frustration but he is now standing more on his own 2 feet so perhaps it needed saying and is not as harsh as it felt at the time? I was at the point of sheer exhaustion trying to sort everything! ( he has other health issues and so lots of  appointments etc)

I’m sorry this is such a long post and it probably shows us both as not being very nice people! But I just wanted to show you that a cancer diagnosis does cause so much turbulence, so many different reactions, has so many affects but life does go on and that life is precious and enjoyable. Also, we have to acknowledge that we are all terminal with or without a cancer diagnosis! None of us live for ever and cancer forces us to acknowledge that and we therefore should live for today and let tomorrow take care of itself.

Do let us know how things go? Do feel free to ask us all questions. Do feel free to express your highs and lows. And finally, do look after yourself in all of this! We women are far stronger than we ever realised before cancer hit our menfolk:)

good luck!