it's back (maybe)

I wasn't quite in your position S-hoop as I had RT first up to deal with a G9, with several lymph node mets.

I have to agree with Ulsterman though. If it hadn't been for a PSMA Pet scan my lymph node mets would not have been picked up and then targeted by RT.

So far, so good with the treatment. PSA at <0.01 at 2 years post treatment, though waiting to see what happens if/when my testosterone awakes.

I know PSMA PET scans are "rationed" according to priorities in the UK, due to a shortage of funding but if you can manage to get one it could be life saving.

Jules

Really interesting for me to keep an eye on your thread Superhoop. Glad you have been able to see someone and they’re going to give you treatment. Will they scan first or just going straight for RT.

My husband is in a similar position. His psa readings were undetectable <0.025 since operation Dec 2021. Then….

Feb 2023 - 0.029 

March 2023 - 0.044

Tests have been every 6 weeks since the rise so next one due 2nd May. I’ve pre booked an appointment for mid May with his surgeon and also have one just before with a local urologist, I guess similar decisions will have to be made then.

It’s a little different to your situation, although he had negative margins, it was in one of the lymph nodes (14 were removed). It was also suspected it had spread to pelvic bone when first diagnosed but second opinion and PSMA scan disagreed. So for my husband I think we would be silly to go ahead with RT without a scan first. HT is also a similar dilemma, he’s had 6 months of it before and I know he would prefer not to have again but we’re lucky to have it as an option if it is needed.

Best of luck with your decisions and treatment.

Elaine

Sounds like they're looking after you.   At your age you want the fix to last as long as possible so the extra is likely worth it. 

I've never wanted hormones as people write it changes who you are.  Calmer and no sex drive.  On the other hand I'd rather be that different person if I needed RT.  It's belt and braces but both playing a part and neither being as good by itself.

Another thing is it puts off urgency for RT if you have it before.  A negative being it uses up your hormone life if you ever get to that stage.

On balance I'd go for it. Regards Peter

Yes we may have the same problem with PSA being too low for a scan, I’m also a bit worried about waiting until his psa gets high enough for scanning though 🤦🏻‍♀️ I’m not sure where we will go for treatment, we live in Manchester but his surgeon works from the Marsden and another private hospital in London. It’s a bit of a commitment to spending many more weeks in London for RT if he needs it though. Maybe his next test will be back to undetectable and we won’t have to worry 🤷🏻‍♀️🤔 #unlikely

I hope the other posts have reassured you about the tattoos….I don’t know anything about them but have to say I’ve never seen anyone mention them being painful so I’m sure all will be fine. Best of luck and will keep checking your progress 👍

I'll add my voice to those favouring HT though now, about 5 months post finishing 21 months of Zoladex, I'm actually much calmer than I was during "the experience". Even if you don't want to go through 3 years of ADT anything from 12 months up is going to help. Biggest problem for me during ADT was lack of sleep, which is not good for the head if it seriously limits your shut eye nearly every day ... not good for the brain cells!

Don't worry about the tatts, they're painless :-)

Jules

Yes I know it can be done in Manchester and if needed probably will be. When we were under the oncologist previously we didn’t really gel if that makes sense….for me it’s so important to have a good relationship and trust in your doctor….I know some would say just as long as they do a good job but for us it’s much more than that….we want to feel like someone is really on our side. Will wait and see what happens anyway….we’ve got used to being in London.