another newby

Hi Thuddly,

Welcome to our club, I’m sure you’d rather not find yourself here but you’ve done the right thing by joining giving the circumstances. My PSA was 36 at diagnosis but I DID have Seminal Vesicle involvement (I didn’t even know what they were before getting PCa) but no sign of spread to bones etc.

You’ll probably still be in shock mode following your diagnosis but once all your tests have concluded, the MDT has met and you’ve made your choice of treatment, you will hopefully start to feel better. I’m not sure whether surgery will be an option for you, it wasn’t for me although I’m in Scotland and they have a different criteria for deciding whether it is.

When you speak to most people on here, they seem to tolerate the RT fine. yes there are a few short time side effects but for me they passed very quickly. HT on the other hand😩…it’s been bad for me bad others seem to sail through it.

In the meantime, whilst waiting(the worst part!) keep yourself busy and active, be kind to yourself and do lots of nice things with your family…it really does keep your mind from wondering and thinking the worst.

Good luck with your journey!

Derek

I thought mine was high too, especially after the phone call from my GP who told me in no uncertain terms that I had PCa! Then I learned that quite a few men(and there’s some on here) have PSAs in the 100s or even 1000s!
So yes, it’s high,  but it sounds as though you will like me, be on a curative path. There’s not much you can do until you have the results of the tests. I had a Nuclear Bone Scan(sounds scary!) but it was a relief for me when that came back clear.

Everyone worries about mets, I still do worry about undetected micro mets and recurrence, but just put it to the back of my mind and get on with having fun. There’s lots of support out there…as well as this brilliant forum, PCUK have specialist nurses who you can phone and they will spend time with you. Also your CNS. If you feel like you could do with more support, Maggies has been my saviour. I go along to the men’s cancer support group meetings and get so much from them. if you’re struggling with anxiety go and see your GP!

Give yourself a few treats to help keep you in the right frame of mind!

Hi Thuddy. My diagnosis was very similar to Decho's - T3b, PSA 36. I went down the surgical route but had to follow that with salvage radiotherapy. You medical team will no doubt be discussing you treatment options with you (if they haven't already). It's always a bit of a difficult decision choosing your treatment option. All radical treatments come with side effects which you may get to a greater or lesser degree. As Decho pointed out the HT was bad for him but reasonably tolerable for others. Feel free to ask as many questions as you like. There are plenty of people on this forum who can give you the answers. Chris

Someone correct me if I’m wrong but as I understand it ,if you ARE T3a the cancer has broken through the capsule. This means that if you opt for surgery there is a higher chance of requiring SRT(Salvage Radio Therapy) I think there are quite a few on here who have required SRT after surgery and who’s staging was T3a or even T3b. However if this is the case then at least you have a Plan B to be cured. If you go down the HT/RT route like me then the only option appears to be HT for life if they don’t get it all.

I wouldn’t mull it over too much before the MDT have met, unless they already have done? If you’re waiting on MRI probably they haven’t. They will decide what options are open to you and they may say No to surgery.

The reason I’m saying this I was told initially that surgery would be an option, and I was getting myself geared up for it as that was my preferred route. However when the MDT met they decided not to offer me surgery and I was gutted. Too much risk of leaving something behind they said. I liked the idea of having a Plan B on the surgery route rather than being on HT for life waiting on the inevitable if the Primary RT/HT treatment hasn’t got it all.

Derek

Hello mate.

I had a similar diagnosis to you T3a, with EPE, Gleason 9 (4+5), PSA about 7 and had surgery. Please see my profile. Do I assume you're intent on RT and HT?

I'd have taken the five zap only option had it been available to me. They only offered me 35 zaps over 7 weeks. I couldn't have managed that many hospital visits. It was the main reason I chose surgery.

I know how anxious you must be mate, we've all been there, but I'm sure you'll be OK.

I wish you well.

Keep us updated, you'll get tons of support here.

ah ok...I thought the psa level much more important than my 4+3 gleason.....so much to learn about a subject I'd sooner be ignorant of..ha!

ah! my high level has had me worried to death about spread even if clear ct reassured me a little, if I can get past result of full mri I think I can breathe a little easier and spend some time here with a clearer mind . from the little I've looked around here the level and amount  of knowledge is immense and gives me some hope.