My husbands recent diagnosis of advanced prostate cancer

User

Posted 08 Jul 2023 at 10:35

Originally Posted by: Online Community Member

Definitely worth cutting your holiday for the scan. Good luck with that.

Great work with the 5k/day and £1500. Is it a gifting page? All the best, Peter

Thanks Peter, yes we feel we have done the right thing and that’s always been important to us…we could have had huge regrets not coming home.

Yes I set up a just giving page, it’s been quite overwhelming all the support I’ve had. Really pleased to be able to be giving a little something back 👍

User

Posted 08 Jul 2023 at 10:39

Originally Posted by: Online Community Member

Elaine, I had my scan done privately and the report was ready the next day, although I didn't see the onco and get the results until four days later

My first scan was f18 1007 and the next one was G68. I think there is a difference between the scans but I will leave that to the scholars to explain. Both my scans picked up tumors.

Hope you get sorted out.

Thanks Chris

Rob’s first PSMA was done privately and we heard back within a few days. I’m assuming we may wait longer this time and it will possibly go to MDT first to discuss? It still might not show anything with his psa being low.

I asked about the scan and the best they could give me was F18, same on all the paperwork so unfortunately have nothing more specific.

Will update when we find out. Thanks Chiris

User

Posted 08 Jul 2023 at 10:47

Originally Posted by: Online Community Member

I'm glad the scan worked out. It's pretty hard getting treatment on the NHS so when it is offered grab it with both hands.

I just googled Nordkapp, I think it's a bit like Scarborough, so you might have had a narrow escape.

🤣 made me laugh Dave. Never been to Scarborough though so still don’t know what I’m missing….maybe try there instead ha!

We had intended to book a scan on our return if we hadn’t heard anything anyway, so yes like you say we have grabbed this opportunity and just see what happens 🤞🏼

User

Posted 24 Jul 2023 at 22:57

Next update.

Rob’s latest PSA 0.221 so we seem to have a doubling time of 3 months and official BCR. I understand this puts him more at risk with a quicker doubling time. Just really glad we’ve already had PSMA pet scan (although I know it might not show us anything). We have appointment on Wednesday to get the results and see what next.

My head is spinning a bit with all the possibilities but trying not to worry too much and stay positive (easier said than done at times though).

Hope everyone is ok and doing well xx

User

Posted 25 Jul 2023 at 17:30

Hi Elaine,

Sorry it is now official BCR. I totally understand why your head is spinning. All sorts of possibilities go through our minds! Hopefully you will start to see a way forward after next week’s appointment.

Ido4

User

Posted 26 Jul 2023 at 08:39

Thanks Ido4

Appointment is today so will see what happens. I’m assuming regardless of what the situation is HT will be starting again at some point, I suppose just hoping RT will be offered because they’ll feel we’re still on a curative pathway 🤞🏼

Hope you’re doing well, great to see you still have an undetectable PSA and long may it continue 👍

User

Posted 27 Jul 2023 at 11:58

So we had appointment yesterday with oncologist. PSMA pet didn’t show anything as possibly expected with low numbers. It has given some peace of mind that there are no big tumours around, and it’s the second scan that it didn’t show in his pelvic bone too.

She recommended that Rob has SRT (to the prostate bed and pelvic lymph nodes) starting in about 3 months time and 2 years of HT. It’s such a difficult decision as we have no idea where the cancer might be (so could be unnecessary treatment) but we worry if we wait for it to show it may have spread further in that time.

Not looking forward to hormones again or the prospect of RT, but to be honest we were very grateful that we had options for treatment and still on a curative pathway.

We still have no regrets of the path we have taken to this point and still think the surgery was completely worth it. The help and support we have had from Robs surgeon is incalculable to us and we feel very lucky to have found him.

Rob had hormone treatment initially of course (prostap 3), he has been prescribed this time decapeptyl. I think I would feel happier sticking with what we already know as he was ok on it. Are the 2 exactly the same does anyone know or could side effects etc vary between them?

So here we go again. Yes I’m worried and wish he didn’t have to go through this again but he’s feeling ok and we’re both trying to think positively. We know we could have had much worse news yesterday xx

User

Posted 27 Jul 2023 at 12:35

Hi Elaine sorry you have to begin treatment again but some good news with the scans I had 2 years of decapeptyl along with radiotherapy and found it all tolerable and worked all the way through with minimal side effects I was told decapeptyl was the best treatment available good luck with your treatment plan gaz 👍

User

Posted 27 Jul 2023 at 15:25

Elaine, hope it works out well for you both.

Thanks Chris

User

Posted 27 Jul 2023 at 15:39

Hi Elaine,

Obviously not good that you guys have to go through this nonsense, but im picking up a positive as possible vibe from your post. Hang on to that as best you can Mrs.

Wishing you the warmest,

Jamie.

User

Posted 27 Jul 2023 at 15:55

Originally Posted by: Online Community Member

Thanks Gaz, really hoping Rob has a similar experience to you and all of this will be over and done with soon 🙏🏼

User

Posted 27 Jul 2023 at 16:10

I am sure he will good luck with his treatment 👍

User

Posted 27 Jul 2023 at 16:22

Originally Posted by: Online Community Member

Elaine, hope it works out well for you both.

Thanks Chris

Thank you Chris, appreciate your support as always x

User

Posted 27 Jul 2023 at 16:28

Originally Posted by: Online Community Member

Hi Elaine,

Obviously not good that you guys have to go through this nonsense, but im picking up a positive as possible vibe from your post. Hang on to that as best you can Mrs.

Wishing you the warmest,

Jamie.

Thank you Jamie, yes we know things could be much worse and are always grateful for that. Of course we would prefer not to be here just like everyone on this site. Getting Rob prepped now for treatment to keep him as fit and healthy as possible x

User

Posted 27 Jul 2023 at 16:36

I am sure he will be fine had no problems with my 37 sessions off radiotherapy I little tired towards the end had a mindset at the time to just get on with life had radiotherapy at 8.00 every morning and went straight to work after each session had the hormone therapy every 3 months and just plodded on nearly 2 years on and more or less back to normal do have the guilty thoughts like Andy and always fear it could change but try to carry on as normal as possible

User

Posted 27 Jul 2023 at 17:51

Sorry to hear the news Elaine and you do set such a positive tone but I imagine it takes a lot of energy to do that especially when you know what your OH has to go through. I’ve a feeling we might be following in your footsteps in a few weeks time so do keep us posted about how it’s all going.Good luck with it all both of you x

User

Posted 27 Jul 2023 at 18:07

Originally Posted by: Online Community Member

You're doing great Gaz and certainly no guilt should be felt. I honestly just love seeing if you guys put good news on here and I’m sure everyone feels the same. I’m not sure the fear will ever go away but I assume it gets easier the longer you stay in remission and as long as you keep on living and loving life then that’s all good 👍

User

Posted 27 Jul 2023 at 18:15

Originally Posted by: Online Community Member

I think it’s ups and downs Kate, I think I’ve been expecting this for quite some time and have prepared us a bit for it. I’ve also heard some really sad stories recently (not relating to prostate cancer) but it does make me realise we are still lucky and things could be worse. I never wanted Rob to have this treatment but the thought that this treatment wasn’t an option as it had gone too far gave me perspective and feel we’d be silly not to grab it. You never really know if you’re making the right decision though.

No reason at all why you will be following in our footsteps and really hope that you don’t. There’s definitely a chance the surgeon got it all and just have to keep believing that until you’re told otherwise. We’re 2 years on from diagnosis this week and 18 months since op so we’ve had some time to be able to get on with and enjoy life again.

Really wishing you both all the best, and will look out for your updates xx

User

Posted 01 Aug 2023 at 10:36

Does anyone know….is there a standard time between RT planning scan and starting RT itself? We’ve had a date for the planning so just trying to work out roughly when when RT will start and finish.
Thank you x

User

Posted 01 Aug 2023 at 11:31

Hi Elaine

I had gold seed markers followed by planing CT scan 10 days later and starting RT 4 weeks after that. RT was 20 fractions over 4 weeks.

Hope that's a help

Peternigel

Edited by member 01 Aug 2023 at 11:32 | Reason: Not specified

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