Nothing seems to be working!

User

Posted 01 Aug 2023 at 10:32

Hi everyone, not even 5 months into this and my OH (aged 53) has gone from T3aN0M0 in April, RARP surgery in June and now to being told yesterday the PCa has spread to lymph and bones.
We were so shocked - and he didn't want to know where it had spread to.
Onco said multiple sites and bone so that's all I know.
He will now start SACT which is Docetaxel + Prednisolone, Zoladex and Darolutamide.
he's also been on Bicalutamide for last 3 weeks.
What the hell is happening.
Is this the right course of action?? So far nothing seems to have worked.
I am so upset, and I appreciate that he does not want to know but I am fumbling around in the dark here and terrified.

Take care,

Tulippy 🌹 x

User

Posted 01 Aug 2023 at 10:51

Hi Tulippy,

So sorry to hear this news. I can completely understand you wanting to know exactly what is going on as I am the same. I’m quite fortunate that my husband gave permission for all medical matters to be discussed with me also so I can email or ring and find out anything even if Rob is not with me. Could this be a possibility for you or do you think your husband wouldn’t want you to know either?

I think it’s important to know the number of sites, as if less than (I think) 5, maybe 3 NHS there is a possibility these can be treated. Even if this isn’t the case, with all the different treatments available these days it could mean that your husband could still live for a very long time with this, and feel well. I can understand this is a really scary time though and being positive is much easier said than done.

When Rob was initially diagnosed I really struggled and decided to go to a local cancer support centre and have one to one counselling. Maybe this could be worth a try for you, or if you have a local Maggie’s group etc. Make sure you get all the help and support you need also x

User

Posted 01 Aug 2023 at 11:17

Sorry to hear the news - I guess that this has come from the histology report/consult?

The original diagnosis would have been a 'guesstimate' based on the biopsy and we only know the full extent with the histology report from the removed prostate/lymph.

Presumably he had a bone scan prior to the RARP so I am a little confused as to how he can be informed now that it is in the bones as they would have seen it pre-RARP and may not have proceeded with it.

Certainly they can upgrade the diagnosis to include lymph node involvement which will then involve additional rounds of HT/RT etc treatment and there are other treatments that can target the bone mets if they are there.

Do you know how they discovered that it was in the bones?

User

Posted 03 Aug 2023 at 12:18

Hi there, completely understand your concerns and no two diseases are the same, but.......

I and other men on here were initially diagnosed with Bone and Lymph mets and are living quite successfully on a range of different treatments.

If your OH does get bad news on the bone and lymph spread, it need not be an immediate threat - he can very likely crack on for years hence.

User

Posted 03 Aug 2023 at 20:45

Ah Tulippy my heart goes out to you. It takes a lot of energy n strength doesn’t it to be strong for our men but you know that you’re not superhuman right? That sometimes you’re allowed to crack and have down times? My research area is in the experience of carers and I know how hard it is to see that you matter too in the midst of this but you do. So my question to you is ‘what’s the kindest thing you can do for yourself right now’? Is it eat chocolate, watch a soap, go for a walk, listen to music, ring a friend - anything that recognises that right now this is really hard and you are recognising that you need to give yourself TLC. Take care of you x

User

Posted 03 Aug 2023 at 13:54

Thank you for replying Paul, and I hope you are ok.

I just need some glimmer of hope, you have given me that.

It seems that they have looked at the spread in body and bone and have just skipped the RT and gone straight to triple chemo and it feels like a last resort.

I feel bad as I have been so strong for last 4 months and now it's all caught up with me.Bad news after bad news.

Now he is the one keep asking if I'm ok and I know I should be supporting him.

This is such a cruel disease :(

Take care,

Tulippy 🌹 x

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User

Posted 01 Aug 2023 at 10:51

Hi Tulippy,

User

Posted 01 Aug 2023 at 11:17

Sorry to hear the news - I guess that this has come from the histology report/consult?

The original diagnosis would have been a 'guesstimate' based on the biopsy and we only know the full extent with the histology report from the removed prostate/lymph.

Do you know how they discovered that it was in the bones?

User

Posted 01 Aug 2023 at 11:37

Hi Steve86, thanks for replying.

He did have a bone scan prior to RARP but it came back all clear. MDT confirmed T3aN0M0.

Results of RARP were 2 positive margins and he was going to go down RT route but his PSA was still 9, same as before op, so that is when alarm bells went off and Onco sent him for PSMA scan.

I did query April's scan results yesterday at the meeting...but onco jumped in very defensive to confirm there was definitely no sign of spread in April.

Take care,

Tulippy 🌹 x

User

Posted 01 Aug 2023 at 12:11

Ahh, so he had the PET scan - sorry I didn't realise that.

He really does need to know the extent of the mets - given that the bone scintigraphy scan showed nothing, they may not be too far progressed and thus very treatable with RT.

User

Posted 03 Aug 2023 at 12:18

Hi there, completely understand your concerns and no two diseases are the same, but.......

I and other men on here were initially diagnosed with Bone and Lymph mets and are living quite successfully on a range of different treatments.

If your OH does get bad news on the bone and lymph spread, it need not be an immediate threat - he can very likely crack on for years hence.

User

Posted 03 Aug 2023 at 13:54

Thank you for replying Paul, and I hope you are ok.

I just need some glimmer of hope, you have given me that.

It seems that they have looked at the spread in body and bone and have just skipped the RT and gone straight to triple chemo and it feels like a last resort.

I feel bad as I have been so strong for last 4 months and now it's all caught up with me.Bad news after bad news.

Now he is the one keep asking if I'm ok and I know I should be supporting him.

This is such a cruel disease :(

Take care,

Tulippy 🌹 x

User

Posted 03 Aug 2023 at 20:45

User

Posted 03 Aug 2023 at 21:37

Tulippy, when I wasn't satisfied with my lack of treatment for a particular aspect of my condition, I got a referral from my GP to a top professor, out of my area. He quickly identified the issue but it was too late to treat, it wasn't life threatening but was life changing.

Admittedly it was pre COVID and before the NHS was struggling, my own consultant was more than happy at my actions and actually welcomed another view of the issue from outside of his department.

Thanks Chris

User

Posted 03 Aug 2023 at 22:45

Tulippy, I am so sorry to hear your news but try and stay positive. You are doing the right thing by talking about it on here and seek help from as any sources as possible when it comes to the mental side of dealing with this disease. This so called ‘journey’(more like an ordeal!) needs you to support each other, there are times when one of you will need the support and times when the the other will. if you can, both of you get yourself along to your nearest Maggies Centre and have a chat, I am sure you will come out feeling better. And as KP123 says, be good to yourself, whatever normally makes you smile, go and do it…and keep doing it.

All the best to both of you.

Derek

User

Posted 03 Aug 2023 at 22:58

It’s been such a shock so far and a long slog so no wonder you feel like the rug has been pulled from under you. Sorry to read this. Such a stressful time for you both and your oh is still recovering from surgery which in itself is no mean feat! As others have said, try and find out the detail if you can and as colwickchris has suggested you can always ask for another opinion. I don’t know whether the treatment regime is standard or not, so can’t advise you.

It’s so important to take care of yourself too and be kind to yourself. Not sure which part of the Uk you live, but hopefully you have access to a Maggie’s centre or a counselling service if and when you may need it. Keep posting, there is so much support on here.
wishing you both the very best x

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