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My husbands recent diagnosis of advanced prostate cancer

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User

Posted 04 Jan 2024 at 00:06

All the aches and pains, are probably to do with being 75, HT and RT. In that order.

RT causing blood clots? I don't know, I have not heard of it. Andy and Lyn have been on this forum longer so maybe they will know.

Medication to clear blood cloths is common, I'm sure it will work. Far better they got stuck in the lungs than reaching the brain.

Considering where you were with the prospect of life long HT which probably would have been failing about now; you are now three years down the line, and still on a curative path. I don't think you've had the easiest three years, but it's been better than for some.

How much longer has he got of HT? It will be less important more than six months after RT, so by June start weighing up Quality of Life Vs risk of recurrence.

Dave

User

Posted 04 Jan 2024 at 00:39

Thanks Dave.

Yes possibly, it’s not something he’s so used to, we’ve always done lots of walking with our dog without problem and now he struggles sometimes and is often limping so we can’t walk for long.

Not sure if the clots are a result of the RT, the chest physician we saw seemed to thing that would be the case but I suppose we’ll never know for sure. Will see if this turns out to be more clots around his liver this week I guess.

Yes from his initial diagnosis we are in a much better place. I am thankful for that, and realise how much worse things could have been. I suppose it doesn’t stop you from having your own moments of worry etc though.

He’s got over 18months of HT left 🤦🏻‍♀️ really good advice though and exactly what I’ve been thinking….my worry is the G9 if it was lower I don’t think we would hesitate to stop the HT. If we don’t get to see oncology before feb (next injection date) then we have an appointment already in May so could discuss it then.

Hope all good with you Dave and everything still going well x

User

Posted 04 Jan 2024 at 08:54

Sorry Elaine to read about Robs latest situation. I can't offer any advice but my thoughts are with you both.

Ivan

User

Posted 05 Jan 2024 at 01:18

Thanks Ivan.

Hope you’re still doing really well. I feel we all pretty much started this journey together. Seems a long time ago now. Take care x

User

Posted 05 Jan 2024 at 08:13

Yes, I'm fine and due my next 6 month post-operation PSA check next week.

And yes, diagnosed during 2021 and operation late December 2021.

Ivan

User

Posted 05 Jan 2024 at 09:23

Best of luck for your next test Ivan 👍

Yes 21/12/21, remember it well.

take care x

User

Posted 05 Jan 2024 at 09:25

Best of luck Ivan for next result. You gave us a lot of support in the early days for which we are very grateful.

User

Posted 05 Jan 2024 at 09:28

Always here to provide as much support as I can. Thinking of you both xx

User

Posted 05 Jan 2024 at 16:04

Elaine, sorry to hear of the latest issues. I did get lots of blood clots coming out of my bladder but this presumably a totally different thing.

Hope things improve soon. Totally understand your comment about struggling.

Thanks Chris

User

Posted 06 Jan 2024 at 22:59

Thanks Chris, hope you are ok.

Hopefully we’ll get the results this week from the liver and it’s all ok.

I really don’t feel bad all the time just have moments which I’m sure is normal. Live is still generally good and I am mainly grateful that we continue to have options but I guess its ok to mourn life before PCa occasionally.

Will definitely have a better mindset when I feel we can start the new year 👍

Take care x

User

Posted 26 Nov 2024 at 13:03

Hi everyone,

Just a quick question if anyone can help?

Rob has just had latest PSA & Testosterone. He’s still on decapeptyl, last injection feb 2025. His psa is still less than 0.03 which is good. His testosterone is 0.6, the doctors have flagged it as abnormal (knowing he’s on treatment). Is 0.6 acceptable for testosterone on ADT? They don’t really allow me to have it tested that often so don’t have much to go on but I remember a few years ago when on Prostap it went to undetectable, less than 0.04. Not sure it’s anything to worry about but of course mind often goes in over drive!
Thanks

Elaine

User

Posted 26 Nov 2024 at 16:50

This thread discusses testosterone levels.

https://community.prostatecanceruk.org/posts/t27679-ADT-and-Testosterone-score

It would seem you OH is within the lowest definition of castrate limit (0.7). A high testosterone score would not mean the cancer has returned that would be indicated by a high PSA. A high testosterone would mean the ADT wasn't suppressing testosterone which is a long way from being a serious problem, especially with him being due to come off ADT in the near future.

Dave

User

Posted 26 Nov 2024 at 22:57

Thanks Dave.

Yes that is what I said to Rob. Not to worry if tst rises as long as PSA doesn’t go with it. The only worry if PSA did rise we may have exhausted 1st generation HT for future use. I think on decapeptyl the lowest it’s been is 0.6 although very rarely tested. I did look into it a bit further and realise it is castrate level so think all should be fine.

Hope all good with you Dave 👍

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