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What now that this nightmare appears to be over, or is it??

User
Posted 10 Oct 2017 at 23:12
Hi all. I wonder if any of you lovely people can help me with what we should do now. OH was diagnosed in Jan this year and we have had a hell of a year!! Please read my bio for full details but to recap Gleason 9, T3b N1, M0.

In the last 10 months OH has had HT (Prostap) which is ongoing, chemotherapy (Docetaxel), 24 sessions of EBRT and brachytherapy 2 weeks ago. Last PSA at brachy was 0.1.

So, now that treatment has finished (other than HT for another 12 months) what should we expect now. OH is veering towards forgetting it ever happened and putting it all behind us but what do you all think?

We have an appointment with the Onco on 14 November and don't really know what to expect now or what questions I should be asking.

Also OH will have PSA tests every 3 months now so at what

Level will they start treatment again. How high does it have to get and what should I be looking out for going forward.

Sorry if I'm rambling but what do I do now that this is over.

Debbie xxx
User
Posted 11 Oct 2017 at 15:30

Debbie,
I don't think it can ever be "over" after OH's numbers were given. The PSA at 0.1 is very good, but if it had been under 0.1, you may have been able to forget PCa for a few years, subject to regular PSA Tests. My PSA nadir was 0.3 and so I'm on ADT for life. You may find OH is on ADT for rather longer than you'd hoped. If nevertheless his PSA rises, there is no fixed point at which further treatment begins. It could be as low as a PSA of 4. It could be higher and depend upon scan results. A return of original symptoms is something to keep an eye on, also inexplicable aches and pains.

I hope none of this pessimistic stuff applies and that further PSA falls are noted and you can both relax.

AC

User
Posted 11 Oct 2017 at 16:12
Hi AC. Thank you so much for your response. You've kind of confirmed what I feared and this thing is unlikely to be over. for good! Sorry if this is a stupid question but what is ADT, is it the Prostap HT?? Debbie x
Debbie xxx
User
Posted 11 Oct 2017 at 18:20

Hi Debbie, there isn't really anyone that can share their experience with you as your OH has had such a rare treatment plan. As you already know, chemo was in the past reserved for men in the final stages of PCa but has more recently been used 'early' for men who are incurable as it has been shown that it can make the hormone treatment more effective for a longer time. Apparently neither of those circumstances apply to you.

NICE has not approved the use of chemo in conjunction with curative treatments so there will be very few men in the same situation as you, and those that exist will probably be at a similar stage I.e there won't be much data at the minute on what is likely to happen next.

If we take the chemo out of the picture completely (and see it simply as a bonus prize) then your closest comparison would be anyone else that has had RT/brachytherapy/HT combo, of which there are quite a few members here. Usually, the PSA is monitored for the agreed amount of time (in your case 12 months) and as long as it has stayed low and steady, the hormones will be stopped and they carry on monitoring the PSA 3 monthly to see how quickly it rises. It will rise without hormones but that is okay to a certain level because he still has a prostate. Different oncologists have different thresholds for deciding that RT/HT has failed - some say 2 or 4 or 10 and one hospital that has been mentioned on here waits until the PSA reaches 20. Ideally, an onco will monitor rising PSA with scans and any indicators of increasing symptoms rather than just the bald number. What happens then? More HT.

Quite what difference the chemo makes, I am not sure but I suspect no difference as far as what to expect next.

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

User
Posted 11 Oct 2017 at 18:24

Originally Posted by: Online Community Member
Hi AC. Thank you so much for your response. You've kind of confirmed what I feared and this thing is unlikely to be over. for good! Sorry if this is a stupid question but what is ADT, is it the Prostap HT?? Debbie x

Not a stupid question - it is androgen deprivation therapy which is a type of hormone treatment. ADT stops the body from producing testosterone (the androgen) which starves the cancer. The other type of HT works by disguising testosterone so that the cancer thinks there isn't any, which starves the cancer. Some men have one or other and some men need both.

Prostap is a form of ADT

Edited by member 11 Oct 2017 at 22:36  | Reason: Not specified

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

User
Posted 11 Oct 2017 at 21:05
Hi Lyn. Thanks for your very informative response. Iv never heard the term ADT before so had no idea what it was but I'll ask the Onco about it when we see him on 14/11. I didn't quite take on board just how out of the ordinary OH's treatment has been until you laid it out and I suppose we have to be happy that we have an Onco with a bit of imagination!!

OH has convinced himself that his PCa has gone Lyn (at least for the moment) and until we know differently I don't want to burst his bubble but in my heart I know this this thing is not done with us yet. I suppose I just have to keep everything crossed that we get a while before it starts it's march again. Thanks again Lyn x

Debbie xxx
User
Posted 11 Oct 2017 at 22:37

Sorry, I must have missed something. What are you going to ask the onco about ADT?

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

User
Posted 11 Oct 2017 at 22:58
Hi Lyn, just if he has any intention of putting my OH on it at any point. As iv said he's only on Prostap at the moment so now I'm wondering if ADT is an option for him either now or later x
Debbie xxx
User
Posted 11 Oct 2017 at 23:08
Lyn iv just reread your message and I missed the bit at the bottom that said Prostap is a form of ADT!!! I thought Prostap was the disguising type of HT but I Think your saying that it's more the stopping testosterone type of HT. I didn't realise the OH was already on a form of ADT. Really need to read things more carefully before responding. I'm blaming the late hour!! Xx
Debbie xxx
 
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