Metastatic prostate cancer

Hello Myrtle

welcome! I’m sorry to hear of your husband’s diagnosis and can well understand the shock and anxiety you are both experiencing.

my husband has been treated ‘with the intention to cure’ and went down the radiotherapy and hormone therapy route. So, I don’t feel qualified to discuss the ‘treatable and manageable route’ as well as a lot of wives and partners who contribute here.

that said, we are fully aware that ‘intention to cure’ does not offer any guarantees. My husband has just come to the end of hormone therapy but it is not the end! He has to have regular PSA tests and any hint of anything other than a small rise in PSA will mean scans, drugs etc. so we live in fear and hope as much as everyone else - regardless of treatment pathway.

what I would pick up on is your husband’s unwillingness to talk! My husband reacted in exactly the same way!!! He would not even engage with doctors at appointments etc!!! I, on the other hand, needed to talk with the world!!!!! ( hence my appearance on this forum where I have received incredible support at the darkest of times!) (Un) fortunately a neighbour was diagnosed within weeks of us receiving the diagnosis. The comparing of notes was, I think, productive and constructive for both of them! I had never felt so lonely in our marriage as at that time. When I eventually told my husband this, he at last opened up…. a lot for him but not much for me!!! But, we are all different and I accept that!

one other thing I would add is that there are lots of different therapies out there for treating this disease and a lot of research is ongoing. Who knows what might me coming down the track? In the meantime, it sounds like your team are going to throw everything at it to control it! I hope that all goes well for you both and your husband will guide your son into becoming a fine, handsome gentleman!

xx

Hi Myrtille , sorry you have joined our club, but welcome.  The first few weeks/months are terrible.  Firstly, shock and then it becomes overwhelming.  I can appreciate your OH not opening up about it, but we all react differently.  When I was diagnosed I was convinced that I wouldn’t make the next Christmas.  Everything seemed to focus on PC and I just wanted treatment to start and didn’t realise that once Hormone Therapy (HT) starts, you can take your time as the drug is already killing cancer cells.  My diagnosis is also treatable but not curable but after 7 years I am still here and enjoying life.  Even since my treatment started things have changed massively and life expectancy is improving all the time, so no reason to think your OH won’t be around for a very long time.  Best wishes and feel free to ask any questions.  David

Hi Myrtille,

I am so sorry to find you here especially with having a little toddler. This is a wonderful community for support, knowledge, learning, sharing and be with people who are fighting this PC bast*rd together.

You had really good replies from the wonderful people here. I just want to add a couple of things;

My husband diagnosed 6 months ago and for the first few days he wanted to keep it secret like your husband. I told him that in order to keep my sanity I need to share it with family and friends otherwise I will go mental. I told him that you do not need to talk about it but I do. He agreed to this and after more few days he started to talk about the PC freely. The initial shock is so big that somehow sharing the burden really helps, especially with people that love you.

He never go on this community even though he arranged a log in etc. I report to him on any new things I learn.

I can see that your husband is very sporty. So is my husband and many other men on this community.  The Ht take away the testosterone to halt and depressed the cancer so sport it a bit more difficult. Saying that my husband and many people on this community carry on with demanding physical activities on a daily basis.

And lastly, for us life gone back to be almost normal. Last year this time we were ready to host our adult kids birthdays and we are doing exactly the same today. Husband is doing all the backing and cooking, I just do the tasting.

Lots of love

Dafna

Hi there, thank you so much for your reply and I am sorry you are going through this too.

It is all very new to us and I am doing lots of research and reading, but also trying not to put too much in my brain at once, it's so overwhelming. Currently my OH is only taking Bicalutamide, in preparation for his first HT injection. 

We have asked the question of supplements. I am not normally in favour of taking those as we can get most things from what we consume except perhaps vitamin D. For now we are adapting how we eat, although we already lead a fairly healthy lifestyle and making some changes to our lifestyle.

I am very much into mindfulness and wellbeing so we already have some weapons of our own to fight this. I know it isn't going to be a walk in the park but we are positive,  we have to be...

I can already tell that I am so glad I joined this community,  the answers I already got are heartwarming.

Thank you for sharing your story and tips, I hugely appreciate it x

Thank you so much for your reply. Sorry you are going through this...

I have updated my profile to show my partner's diagnosis, thanks for the tip

Hi Eddie, thanks for your reply, really appreciate it! I am sorry you have such an aggressive form of cancer. Have you also done chemotherapy? I am glad the treatment is working well for you and I am conscious that life isn't going to be a walk in the park going forward... But we are both very hopeful and willing to do everything it takes to keep him with us for as long as possible. 

Congratulations on getting married, what a wonderful thing to happen in such circumstances.

Good luck to you x

Hi Myrtille, I have sent you a friend request on here, so feel free to reach out if you want to. 

re the supplements. I am taking vit D and calcium supplements. It was advised by my consultant. He said you won’t get enough normally to combat the bone loss from the HT.

Your hubby’s stats are almost identical to mine.

Mine T3b N1 M1a His T3b N1 M1b 

I have no bone involvement though, however my PSA is 111.

maybe we can swap stories!

Best wishes,

Grant 

Hello, Thanks for your reply, I really appreciate it! Sorry that you have to go through this too. How is your hubby coping with the treatments?

Regarding communication,  things have actually progressed majorly since I first wrote on here. We had close friends over for dinner yesterday and at the end of dinner, he just told them he was unwell and slowly told them what was going on. I was speechless as he had made it clear that no one needed to know. This morning he was also on the phone to his very good friend who also had an aggressive PC and went through radical prostatectomy years ago. I am so relieved that he has decided to talk.

I asked him how it made him feel and he said it isn't so bad to share the news, he was worried that his emotions would take him over, he didn't want people to feel sorry for him but he feels a lot better for it.

Thanks again for your kind words and I wish you and your husband the very best x

Hi David, oh I loved reading your reply! Of course not the part where you had to go through this... He has actual’y started to open up and it was a big surprise. He said what he is most afraid of by telling people is to be taken over by his emotions, making people uncomfortable or feeling like they pity him. I think he can see that it's beneficial and that he has so much love and support around him! 

I am glad you are doing ok after so many years. 

Did you also have chemotherapy ? I suppose that's the part that scared us both the most... (aside from the obvious).

Hi Dafna,

Thanks for taking the time to reply, I greatly apprexiate it.

I had a look at your profile, your husband has the same diagnosis as my partner. Mine has only just started to take Bicalutamide. He will also have chemotherapy on top of HT, I see no mention of chemo on your profile, do you mind sharing why you didn't opt for that option?

It looks like we had a similar start as regards to the communication but it has already improved and I à so glad he is opening up. 

Wonderful to see that you are able to live a normal life and I must have a word with my partner for him to do more cooking and me being the taster.

Best of luck x