New member here.

Hi Frank,
do you have a letter with the details of your diagnosis? Did they say you had adenocarcinoma or a different type of prostate cancer? There are about 27 types in all and while men with the common type tend to have a raised PSA there are some types that do not so maybe you have one of those?

It is good news that they are planning to give you radiotherapy - they must think there is a chance of getting rid of it. It is also good news that the first number in your Gleason score is a 3 - much better to handle than a 5+3 would be.

It is against the rules to name doctors, nurses etc so perhaps edit your post before the moderators come along - just put Dr S or something like that.

hi frank

hello and glad you joined this site, dont know what other posts you will have read already but one thing is for sure the help and advice on here is great.

normal advice is click on others avatars to see who and how they are, get the toolkit its fantastic advice, talk with the specalist nurses, and keep us informed as you go along

you may still be trying to get your head around what is happening, the waiting for anything to happen ie tests and results, you may or maynot have told family or friends

what you will find out is that everyone deals with this PCa differently their is no set way only your way.

if you feel their is one person in paticular you want to ask a question of then just PM them they will not mind

kep logging have a read how others are doing feel free to ask or make comments no one will judge you

I to try to take pics especially wildlife, their is also nikonsteve but he is out of my league

lots on here who do regular excecise

nidge

I just wanted to say hi you have signed onto a really friendly forum so you are never alone in your journey. I am sure you will have lots of questions.

Being a type 2 diabetic should not cause any additional problems certainly not with your current HT or RT. However If you are advised at any stage to use a drug called Abiraterone or any treatments that require use of steroids to supplement them then seek advice from your diabetic nurse. Steroids cause blood sugar to rise significantly and sometimes T2diabetic patients need extra diabetes drugs or increased /different type of insulin during the use of steroids. It is usually only a temporary thing.

There are several other active members on here with T2 diabetes.

Best wishes

Xx

Mo

Welcome Frank. I am a type 2 diabetic and been on HT for over three and a half years with no problems related to the diabetes. As Mo has said above if you ever reach aberiterone as an option it can unsettle the blood sugars but enxalutimide is an alternative. However you are a long long way from there and so hopefully if your bone scan is clear they have a curative approach using radiotherapy.

It is always a little daunting at the start but hopefully as you get used to it and have treatment you will get to feel relaxed and return fully to your life and living. Good luck on your journey and ask away, someone here always has the answer!

Welcome to the site, the members so far have offered excellent advice, as always.

I would just like to add that my OH was treated in South Wales, so any advice in that respect, I may be able to help with.

We have a fantastic oncologist based at velindre in Cardiff who you may be referred to, I note you are seeing a Urologist first though, and do not want to rush you. The exact diagnosis can take a while, so once you know more, we can all offer more help and perhaps I can privately comment upon those professionals that we found to be useful.

Alison

Hello Frank and welcome.

Can't add anything to what the others have said so really just to say glad you've found us, we'll do the best we can with questions and advice.

All the best to you and your other half. There are a number of wives/partners on here tell her and we all understand what you and she are going through.

Best Wishes
Sandra

Hello again Frank.

It's wonderful that you are so cheerful and positive and it's good that your faith gives you strength and support.

I'm sure you'll also hear from other Christians going through the same ordeal as yourself and who have also found their faith invaluable.

What a good job that your brother is supportive enough to tell you to come and go as you please, what a star!

Although the news you have received is not good, the mere fact that the attention has been "fast and furious" is brilliant.

Where would you be further down the line if there had been delays. You obviously do have a working guardian angel

Glad you are so upbeat Frank and hopefully that treatment plan will be sorted soon.

There has definitely been some research into the benefits of early chemo but will let others give you the detail.

One thing you may want to know about this forum is that it is accessible...so anything you post on hear can be seen by anyone who does a search on Google etc.

Take care

Bri

Hello Friends,

I apologise for the long delay, I simply mislaid my log-in details, which I found tonight within my Toolkit folder!

In the meantime, the specialist I saw for a 2nd opinion, simply did not make any further contact - very nice.  So during August, my wife and I took a trip to London to see another urologist specialist, so I could enquire if I could be treated with NanoKnife or Hifu. The short answer was no. Simply because of my heart disease and also because my prostate is almost full of cancer. Therefore, our trip home on the train was not pleasant, even if the sun was shining brightly. The only treatment available to me is radiotherapy.

After arriving home, my wife and I looked through the urology report we had from our local hospital. It wasn't presented in an orderly fashion at all. The piece of paper that ought to have been at the top of the pile, was discovered in the middle of the stack of papers.  This was the original letter that my GP had sent to the urology department of our local hospital. It was dated 21st January 2015.  The letter was titled in bold print  URGENT  SUSPECTED  CANCER.  Now some bright spark, I'm assuming in urology had put a rubber stamp right next to these words, and instead of ticking URGENT, had put a tick next to the word ROUTINE - very nice.  You can imagine our surprise on discovering that letter in August this year.  As I didn't see my urologist until 13th May 2015, 4 months has been wasted!

Ok, I'm on hormone therapy already, so some form of treatment has begun, and we go to visit the oncologist on Wednesday morning. So things are slowly moving along.  But in my head, if radiotherapy doesn't begin until January 2016, this means that the cancer within me has had 12 months of attempting to give me hell.  Unless of course the hormone therapy is doing it's thing.

Frank.

Hello Puffingbilly,

thank you for your reply. Good luck with your treatment!

I forgot to add, that in my case my PSA only showed 0.9 according to my urologist. Yet later on after the MRI scan result, I was told that my prostate was almost full of cancer, four fifths or something like that.

The specialist in London told us that my cancer appears to have 'leaked' to my seminal vessicles. This is the reason, why I worry if it has spread any further.  Also I had my second injection of prostrap, about 3 weeks ago.

I'll see what the oncologist has to say.

Frank.

Hello Lyn,

thank you so much for your post.

My appointment is 10.30am, and if we don't finish too late, my wife and I will visit our son in Cardiff for a few hours.

Frank.

Hi Old1

My PSA at diagnosis was 3.8 then 4.6 with extensive bone spread, my oncologist has me scanned every 12 weeks.

In his opinion PSA will give him no indication of progression only scans and pain.

Si

I'm beginning to wonder whats the point in having PSA tests.

Contrary to that surly the lower the PSA like undetectable, or close to it, is what we are all aiming for ?

Again I'm assuming when you get these numbers, the majority will be feeling well ?

I have only had one Onco. visit, which was based around PSA results. My next visit will again be based on PSA results, providing of course  I remain as I am.

Sorry if i sound like a dum dum but this is sounding like a lottery, as you have said zarissa "Other mens cases are of course different"

Hello Man with PC,

I apologise for missing for a few weeks. I believe I had all my tests done, after the urologist performed a DRE examination. I have an abnormality on the right side of my prostate. Plus my symptoms I would say are relatively severe. I worry about travelling, for example.

I can't remember much about my consultation, as I didn't make notes, and the chappy appeared to be in a hurry!

I have to wait really until I've had my third prostap injection, a few days after Christmas. I've been given a 2 page leaflet
discussing the low fibre diet, and was given a liquid laxative.

In 2 weeks time, I go for my CT scan and have tatoos placed on my belly. One thing that concerns me as I wait for radiotherapy, is being anxious about how much water I need to drink, and how long do I wait for the radiotherapy?

I had a meeting with a group of fellow cancer patients yesterday, with the Pembrokeshire Cancer Support group. Nice friendly people greeted me, and we had a lovely time. One gentleman who had radiotherapy on his prostate 18 months ago, really put me at ease. He said, he was told to sip 2 tumblers of water and had to wait 30 minutes before treatment. I hope I can manage that!

Frank.

Hello Arthur, 

thank you very much for your reply.

In just under 2 weeks time, my wife and I go to the hospital, for the CT scan and to get the tatoos.  I shall try not to worry too much about the water intake and waiting!

How did other members get on with the low fibre diet?  Was it ok to deal with?  I'm not too concerned about this, food is food.  Someone has told me that it's a bland diet - well, so am I!!

I suppose I'll soon be looking forward to the RT treatment, possibly by January or February.  I'll know more just before Christmas, I think.

Frank.