Scared and shocked

Hello Dennychick and welcome to the site.

I'm so sorry to read about your husband but please remember, he may have been diagnosed as "incurable" but that's not to say that the estimated 4-5 years is accurate.

HT, for instance, is likely to bring his PSA right down, which will give you both a lift because you'll be able to see that HT is working towards allowing him to take part in other teatments.

We have had members on here with much much higher PSA than your husband or even Valleyboy and even though not undertaking curative treatment it has allowed them many more years with their loved ones.

There is also the possibility with the way research makes such huge leaps, that at some stage another break through will happen and different treatments will be trialled.

Don't despair, don't give up hope.

Live each day as a new day if you can. I know that like most of us wives, you will do your utmost to be there to support him and give him the occasional nudge when he gets down.
Having said that, it can be very draining on the partners and wives so take care of yourself too.

I hope that your daughter's treatment is also successful. Her dad's cancer right on top of hers is not what any of you want is it.

Best Wishes

Sandra

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Edited by member 20 Jul 2018 at 17:13  | Reason: Not specified

Hi Again, Haven't updated since my first post so I thought I would get it done today.

Looking back on getting the news at first to where we are today seems like an eternity ago even though its only been 6 months. 

We seemed to wait an age for test results after the initial diagnosis , Oh was put onto HT straight away, we had been told it had probably spread but had to wait to find out where. 

Eventually we had an appointment with the onco who informed us it had spread to his bones, and lymph nodes in the pelvis. However from the initial psa of 1098 his had dropped to 37 just with HT.

And where we thought prognosis was 4/5 years they have now said 10years or more. He is currently going through a course of chemo 6 sessions and number 5 is on Thursday.

His PSA has fluctuated through Chemo but his latest result this week was 13.

I suppose the reason for my update is for anyone who is in the place we were last year at first diagnosis I want you to know that it isn't always as bad as you think it will be. We know it can't be cured and there are side effects with the therapy, but no where as bad as I was expecting. When you read all the brochures and see all the possible side effects we were prepared for the worst, but other than being more tired than usual and the loss of libido he is fit and well.

The same can be said for his chemo treatment, we had a couple of admissions to hospital with possible infections when his cell count was low but since i've locked him in the house for the few bad days no problems at all. 

He hasn't lost his hair even though I shaved it really short to prepare ourselves !! He hasn't had to shave for about two months though which he finds a benefit.

While we waited for results we stopped talking about our future as it didn't feel like we had one, it was so difficult as we always had plans in the pipeline for holidays or retirement. But now we are planning a holiday to America later this year and looking at beyond again.

We know things may change but have made a conscious decision not to give in to it and let it define us, we will do whatever we need to treatment wise to give him the best chance of being here for a longer time.

His doctors are pleased with him and said his overall fitness has made it easier for him to take the treatment. So for now we are feeling positive and will enjoy what we have together.

Hope this helps if you have just been dealt this devastating blow. Happy to talk to anyone directly.

Tracy and Keith x 

Steriods give him weird vivid dreams and the day before chemo he takes ten tablets so they can keep him awake.

Hi everyone, thought I'd post a further update. Has his 6 week check up today post chemo ended, PSA result was 1.7. All other bloods tests normal, so at the moment they are really happy with him. Nurse has said that basically they have stopped the cancer cells from growing. So he is just on prostap now with three monthly check ups. Feels like we can look forward now and is such a relief. I know he will never get the all clear but it feels good to know its under control for now.

Tracey

what a fantastic result and a wonderful attitude. Our journey has been nearly 9 years now, we started on the old protocol where chemo was only given late, which my hubby finished ten sessions in January, it didn’t do the trick for him but he was put on Enzalutimide and that has been amazing. I always say that we have been unlucky/lucky. No one wants disease but given the spread we had, we have been lucky, I’ve know people with much lower Gleason scores (hubby’s is 10) come and go in the time I’ve been on here. I can’t say it’s all been fun, but could be worse!

enjoy every lovely moment together, it’s what we do. Regret nothing. It’s a great way to live.

love Devonmaid xx