Hi my prostate cancer was T3b or regional localised prostate cancer . My Gleason score was 4=5 =9 . I am having 3 years of hormone treatment and have just completed 37 fractions of radiotherapy . I used to work for the NHS and recently started as a medical journalist so may be of help to you /others just ask and good luck . My psa has dropped from 32 to about 1 and should fall to almost zero . You really need to be treated asap !!!

Hi to @tonybear,@billygoat and @telemando ​​​​​​

thanks for the introduction, found some useful information on here from you guys.

i saw from another post that you has t3b, at what age were you diagnosed? And when did you have your  prostrate removed?

did you have any symptoms of bone pain or fatigue?

i was initially led to believe it was t2c which would have matched the 7.6 PSA but then got a 5 on MRI and have a lowing Gleason. They talked about possibly having radiotherapy after prostrate removed or hormone treatment.

what were your timescales?

Hi telemando 

Before they knew about the cancer i was having loads of other tests I was having shortness of breath as soon as I did anything they booked me in for a treadmill test, connect me to a machine and see what readings were, never done nurse couldn't find BP she tried three times both arms she checked her self said it was working OK, went to get specialist he couldn't get any thing either (i know i was still alive i think) in the end they connected me to m/c wires everywhere all i got was,, ooh,, they never told me anything next week letter from doctor for some heart tablets, that was a bit of a shock.. How are you doing with your problem.

Billy 

I've found a few tricks which help with my BP.  I'm normally on two tablets of Lisinopril a day, and I usually take one in the morning and the second in the evening, plus one tablet of Bendrofluazide which I also take in the morning.  I've been on this for around 10 years, and I think it's probably calmed down the worst excesses of my high BP. 

If I know I'm going to have an "important" BP test then I'll take all three tablets at once, 2-3 hours before the appointment time - and then resume the usual regime the next morning. That seems to work OK. 

I've got my own BP meter and when I use it and I'm relaxed, I can get acceptably low readings. However, it all just goes to pot when a doctor or nurse takes it.  It's called white coat hypertension and it's been a problem for me all my adult life. 

Hi tele it wasn't BP so much as heart had slowed down I'm on permanent fludrocortisone it's a steroid I'm only on mcg but I can do things normal know as long as im careful to much exercise I've had it (manely 5mins) thats trouble getting old. Hope your bladder sorted, good luck.

Billy 

Hi Billygoat.  My bladder cancer operation is in exactly 7 days times. I hope that this time (1pm) next week I'll be waking up in recovery.  I'll keep you posted, but meanwhile it's that strange waiting period one gets before surgery... 

Hi tele, of wish you all the best for next week. I have my Choline PET tomorrow but there saying by surgery won't be for another 5 weeks - this seems like a lifetime of waiting when you just want it taken out!

Hi zinzan 

Your lucky from finding my C to starting treatment was over FOUR months luckily it all worked fine in the end, try to consontrate on something you like to do, it does help.. 

Billy 

Hi Tele,

wishing you good luck for tomorrow 

Hi billy,

thanks for for the wise advice, tried to focus on a few things

Hi Zinzan.

Many thanks for your good wishes. I'm feeling a bit nervous now, but it'll be over before I really know it. 

Cheers

Telemando

Met the surgeon today, still another 4 weeks before d day. He answered lots of questions and was helpful but I find as before that I still have lots more to answer that I didn't think of at the time.

for those that had laparoscopic surgery, how long do the wounds take to heal? Strange question I know but we have a family holiday 4 weeks after surgery , unless by a miracle the surgery is earlier. Although I know that I will have to rest and won't be able to do much in the early weeks, I would like to be able to swim with my boys on holiday and thought this might be good exercise but I worry about the wounds and infection

Met the surgeon today, still another 4 weeks before d day. He answered lots of questions and was helpful but I find as before that I still have lots more to answer that I didn't think of at the time.

for those that had laparoscopic surgery, how long do the wounds take to heal? Strange question I know but we have a family holiday 4 weeks after surgery , unless by a miracle the surgery is earlier. Although I know that I will have to rest and won't be able to do much in the early weeks, I would like to be able to swim with my boys on holiday and thought this might be good exercise but I worry about the wounds and infection

After my RP, the wounds were dressed and I was visited by the district nurse a couple of times per week, when the dressings were changed.  They scabbed over pretty quickly and after a month they were just prominent scars.  After 10 years, the scars have faded away and you can hardly see them.

I'm not sure that you'll be able to swim so soon after surgery. You will still be incontinent and wearing pads. You'll still be getting dreadfully tired, too.  I really don't know whether this is a good idea or not. I know it wouldn't have worked for me, but I'm not you.  I wish I could give you better advice. Sorry.

Thanks for the advice. I seem to have completely forgotten about the pads! Maybe I will just resign myself to sitting down, reading a book  and watching them. Maybe I am thinking about moving forward to fast.

i have seen other posts talking about the tiredness and that makes me feel even more tired that now!

I have just completed 37 radiotherapy fractions to help cure my prostrate cancer and have been taking hormone s for 6 months (30 months to go . ) I felt really tired but have a really brisk walk , about 2/3 miles daily and slowly have started to feel much less tired . Doubtless being bombarded by radiotherapy killing cancer cells and healthy ones must have depleted my immune system because it takes a lot of energy for the body to repair them . Also being dehydrated can make you very tired and poos eating lots of Iron and Vitamin D is highly recommended also avoid fatty acids . A radical prostectomy will have a huge effect its like being shot and huge resources are needed to repair everything . Poor sllep and natural worry , will the cancer return will also drain your resources . Further treatment , usually a smaller amount of radiotherapy is common after the surgery usually to kill off the cancer that was not taken away and remains in the prostrate bed . After that you should be fine . The PSA level will be watched carefully for years now to see if they rise and usually if they creep up to about 20 you will be offered other interventions to keep you alive for many years .Don't sit around and feel sorry for yourself get new interests and get walking . best wishes Tonybear