Devastated.....very little else to say right now

I was diagnosed nearly three years ago (at 58) with treatable but incurable stage 4 PC and know how devastating it is.

All you can do right now is keep you’re headspace for the challenges ahead but you should know by now that we are all here to help you and your OH to make sense of this change in life for you as much as him.

Ask away and you will get answers to most of your worries. But you’ll have to wait for more data to really understand what’s just happening to you both.

The waiting is the worst problem at the moment while your mind is in overdrive. It’s natural to panic a bit but as days turn into weeks you will gain the strength you need to support yourself and your OH.

Sorry to read this, diagnosis has, so far, been the worst aspect of this extremely difficult journey. My advice:

Stay away fro Google search, address one hurdle at a time and most importantly, speak to each other.

Sending the support of this forum.

Hello Polly (Polly1912) 

Thank you for your update, although I am so sorry to read your news. "Treatable but not curable" is not what anyone wants to hear. We do have Community members here with a similar diagnosis who received their diagnosis over 12 years ago and they are still with us.

So urology have been proactive and started your partner on Hormone Therapy. Degarelix works by depriving your partner of testosterone and thus "putting the cancer to sleep". I personally would want Urology to hit it hard and fast and when you next speak to them ask about "Triplet Therapy". Link here.

Triplet Therapy

You need to stay strong for your partner, but don't forget to look after yourself. remember there are plenty of research projects running and clinical trials are producing new medication all the time. if you need to vent do it here, not at home.

Despite the diagnosis - life goes on, if you do need any help let me know if I can help or use the Support Line on 0808 808 00 00 (8am to 8pm 7 days a week)..

Look after yourself, look after your partner and ask any questions - there's always someone about and we are all here for you.

Best wishes - Brian.

Hello Polly, so sorry you've received such devastating news. We're new to this journey too, and it's the waiting, for tests and then results that is so hard. I keep thinking that there has been a terrible mistake...a mix up of notes, someone else's results.

There are so many kind, knowledgeable people on this forum that I hope as you find out more, you will get the support you both need. Thinking of you x

My partner impressively asked about triplet therapy today, I didn't think he would take anything in and I was armed with a note book that I didny write in as I just was not prepared for the news! The Urologist called triplet therapy something else.....multi something.....but said to discuss with oncologist, said we wouldn't see the Urologist again. He was really amazing though.

Hi Polly1912. As others say - this is the very worst time for you both. We were here late 2022 and had chemo radiotherapy and lifelong hormone therapy. Unfortunately we were not offered triplet therapy which may be worth asking about if not offered.Since all this life has reached a new normal- Yes we feel cheated and devastated at the moment things are quiet. There are tools in the toolbox so they say. Incurable is devastating but once you have a plan and the support from this group and others life will settle for you all. This group is amazing and we are all in the club we don’t want to be in but we are here for you. Best Wishes x

Hello Polly (Polly1912) 

Thank you for your reply. Once he's had his MRI and Biopsy it SHOULD be a meeting with Oncology to set up a treatment plan. I haven't heard of triplet therapy being called anything else.

If you aren't already doing so, start collecting, names, telephone numbers and e-mail addresses for anyone who is dealing with your partner - you never know when you may need them again.

As you will have questions for your oncology meeting here's a link to a list that will help you prepare your own questions.

Questions for my Team.

It's great to see your partner is interested and with a positive attitude he will do well.

Best wishes - Brian.

Hello Polly, you are at the very worst part of this cancer journey. The diagnosis completely turns our world upside down. I was filled with all sorts of emotions - fear, anger, grief, anxiety etc. I also couldn’t stop crying! I every time anybody spoke to me I cried. Every hospital appointment, I cried! The problem was that we were still having to wear masks at the time and I never did work out how to mop up the tears and blow my nose without removing a mask!!!  

however, your partner has taken the first step in tackling the problem . As Brian has said, the degarelix will stop the testosterone upon which the cancer depends to grow and spread. I always remember the specialist nurse saying that the minute he swallowed the first hormone tablet the cancer ‘ would be stopped in its tracks now.’ I couldn’t get that first tablet into him quick enough!! I’m not sure whether or not her words were clinically correct but it was a relief once he had started the hormone therapy! The other thing we were told is that the prostate cancer journey is a marathon and not a sprint. That helped too!

however, what I now realise is that once you know the full extent of the problems and the treatment plan, you begin to settle into a new and different ‘way of being’. Your priorities and outlook on life do change but life does go on and , actually, it can be lived ! We are amazingly adaptable as human beings.

i did find our relationship changed - for the better! Our adult children suddenly realised that parents don’t last for ever. They really rallied round and gave us so much love and support. Amazingly, my husband and I drew much closer. He, too, had lots of emotions but talking about them rather than bottling them up was good for both of us. We fought through it together and drew closer.

however, you will feel times of being overwhelmed, swamped, deluged etc. that’s when you need to do something nice for yourself - with or without your partner. Set little milestone outings etc. 

my other tip is to get as much reliable information as you possibly can. Knowledge is power! It will give you a sense of control in what initially seems an uncontrollable situation.

Last but not least, don’t forget that all of us wives and partners have been through those first few weeks! We understand ! We, and our menfolk are here for you and your partner!

I do hope all goes well and send you a big hug x

Thank you, also thank you for sharing your story and blogs️

Thank you️