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User

Posted 16 Apr 2024 at 19:34

Hi , not really sure how we feel about the outcome of today's meeting, they want to do 6weeks of radiotherapy to the area where the prostate was and 24 months of hormone therapy. They have said that it is unusual as all margins left were negative..... They won't do any scans until his PSA is 0.2 . We are having another PSA test in two weeks, giving us a bit of time to decide, but I don't think we have any other choices.

User

Posted 16 Apr 2024 at 19:42

Thank you for the update. I was wondering how you'd got on. Is that 30 radition treatments from Mon - Fri for 6 weeks?

User

Posted 16 Apr 2024 at 20:03

Hi Adrian, yes that's right..... I just can't get my head around the fact that they are guessing about location of the cancer....

User

Posted 16 Apr 2024 at 20:55

That's a long sentence of HT for salvage treatment

User

Posted 16 Apr 2024 at 21:46

Hi Chris, what would you consider a reasonable length of time?

User

Posted 17 Apr 2024 at 00:19

Originally Posted by: Online Community Member

Hi Adrian, yes that's right..... I just can't get my head around the fact that they are guessing about location of the cancer....

But if the alternative is to just accept that he is incurable and will have hormone treatment until he dies in 5-10 years, the 'best guess' starts to look much more appealing - an opportunity to still achieve full remission. And in your case, they have a lot of data from the diagnosis to help them make a professional judgment (rather than just wild guesswork) - the fact that the initial staging was T3 and, as you said in a previous post, you had chosen surgery knowing that further treatment might be needed.

My husband had a recurrence post-op and had salvage RT to the prostate bed and bladder - no scans, just a 'best guess' based on the pathology, the oncologist's many years of experience and how the PSA was behaving. That was 12 years ago so, in our case, was worth the gamble!

Edited by member 17 Apr 2024 at 00:25 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 17 Apr 2024 at 06:39

Hi LynEyre

Thank you for your reply ,yes we were told that further treatment might be needed, we just didn't expect it so quickly after being told the surgery was a success and had negative margins. Your reply has really helped me to put things into perspective. The consultant has acted very quickly which is brilliant , may I ask is your husband in full remission?

Thank you

User

Posted 17 Apr 2024 at 07:30

Originally Posted by: Online Community Member

Morning Lyn.

Willow mentioned that her husband was going to be prescribed a 2 year course of HT

Do I recall that John was also initially prescribed a long course of HT and decided that he'd had enough after 6 months and opted out?

Willow,

This is a recent conversation that seems to raise similar 'best guess' issues.

https://community.prostatecanceruk.org/posts/t30450-PSA-doubling-time-and-what-next

Edited by member 17 Apr 2024 at 10:01 | Reason: Additional text

User

Posted 17 Apr 2024 at 13:51

Originally Posted by: Online Community Member

Willow mentioned that her husband was going to be prescribed a 2 year course of HT Do I recall that John was also initially prescribed a long course of HT and decided that he'd had enough after 6 months and opted out?

Oncos have such wildly different approaches and presumably each feels that their way works. John was different to Willow's OH in a couple of ways - first, his PSA didn't rise so soon after the op (it took 2 years), second - he had hormone tablets rather than injections and third - the original plan was for 3 months before RT and one year after. But yes, you are correct - he stopped the bicalutimide 3 months after the RT rather than do the full 12

Lots of research these days to suggest that 18 months HT is just as effective as 2 or 3 years but there may be a very good reason why Willow's onco is saying 2 years ... for example, the 18 / 24 months is usually referring to how long after the RT. An onco might say 2 years meaning "3 months before, and a bit more than 18 months after"

Edited by member 17 Apr 2024 at 13:56 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 15 May 2024 at 14:36

Hi ,

Just a quick update, hubby's PSA has risen again so he has started treatment , 2 years of HT and 6 weeks of radiotherapy.

User

Posted 15 May 2024 at 14:58

Hi again,

I'm sorry to hear that there is a PSA rise. Let's hope the treatment brings it back down.

Wishing you both well.

User

Posted 15 May 2024 at 15:31

Hi Adrian,

Thank you, fingers crossed this will work ....

Thank you again for the link you sent me , it was incredibly helpful.

User

Posted 15 May 2024 at 22:19

Hi Willow,

Sorry that this has happened but at least a treatment plan is in place and I assume when you say treatment has started you mean HT and he will start RT soon?

I think he will be fine with RT although maybe find 6 weeks a bit tiring. As for the HT hopefully he’ll be lucky and not have too bad side effects. If there’s one bit of advice I would give him it’s to keep exercising, go the gym if you have one,or if you don’t like that sort of thing buy some resistance bands….it’s amazing what exercise you can do with these, and it’s important to try and stop your muscle loss. If you know a good physio go and see them and they will advise on what exercises would be good for you. Try and keep these going even during RT, that’s when my troubles started after I eased off during just 4 weeks of RT.

Wish him good luck from me, and indeed to you as well.

Derek

User

Posted 16 May 2024 at 07:08

Hi Derek,

Thank you for your advice..... Yes he started HT , it will be about 6 weeks before RT starts. He isn't working at the moment so hopefully he won't find it too bad.

User

Posted 05 Sep 2024 at 23:04

Hi all, just an update OH has just finished his RT course, He has managed really well, no major problems.. just very tired at times....just waiting on consultant appointment to see how it all went.

User

Posted 05 Sep 2024 at 23:16

Many thanks for your update. I hope the results are good and that the additional treatment has been a complete success.

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