Good morning Neville and welcome
Chris/Woody has said it really but I would emphasise the idea of obtaining The Toolkit from this site's publications section.
They are a set of booklets which describe symptoms, treatments and emotional feelings and also helpful addresses.
8.2 is a little high but not the highest by a long long way for some men on here.
Once you've had the biopsy (~and by the way my husband's experience was the same as Chris', uncomfortable rather than painful - the aftermath can be a bit drastic though with blood in the urine and semen as well as some bad bruising so be prepared for that) things will be made a little clearer to you by the consultant.
Shock and disbelief are the first normal reactions. These will fade and you will get to grips with it all, with the help and support from the members on this site.
Ask any questions that you like, whatever pops into your head and worries you. Nothing is regarded as stupid or obvious. If you don't know and want to know, then ask away.
Best Wishes
Sandra
We can't control the winds - but we can adjust our sails |
User
I am new to the site as well.
Cannot add anything to what others have said.
Another abbreviation for you - AS - active surveillance, (which the toolkit will explain) but basicly means regular blood tests and scans, to keep an eye on things.
Best of luck with your tests and biopsies, lots of support here.
all the best
User
Hi there,
Yes it is scary & its the waiting & not knowing which is the hardest. Mine was found quite by chance after a urine infection occurred twice in a month. My PSA was 4.1.
I toddled of for a biopsy & the results came back positive for cancer. I then went for a MRI scan & they identified it was very near the centre of the prostate. After chatting with my consultant I opted for Active Surveillance. Now everyone is different but this really did not sit well with me once i started it. It played on my mind & so 6 months on i decided to have the surgery. I found a very good surgeon who could offer the robotic procedure & after a couple of visits I was booked in for the op.
That was almost 4 months ago & i have not looked back. I am in a far better place now, no cancer, mentally happier & looking forward to the future for the first time in probably 2 years.
Good luck with the results & what ever the outcome you will at least know where you stand & will be able to make a decision that suits you.
To reiterate probably the hardest part is the waiting...
User
Well good luck with the biopsy Neville.
Hope it all goes well for you.
If you feel overloaded and confused then please ask about whatever it is that needs clarifying and someone will do that for you. Sometimes, in our search for knowledge we get a bit ahead of ourselves. Until you have your biopsy results you won't really know what aspects need researching so take a step back and relax.
As for the scared bit - well, it goes with the territory doesn't it.
You are not alone in feeling that I can assure you.
Please let us know how we can help with questions
Edited by member 05 Dec 2015 at 09:47
| Reason: Not specified
We can't control the winds - but we can adjust our sails |
User
hi neville
it seems you have taken a lot on board and looking at to many of the what if's, as already said just sit tight and wait for the results, its not easy to do but we have no choice, you will then be able to understand a bit more as to where you can start dealing with all what is happening, keep us all posted on the biopsy their will be someone on here who will be able to help
regards
nidge
run long and prosper
'pooh how do you spell love' 'piglet you dont spell love -you just feel it' |
User
Hello again Neville
Well Christmas Eve wouldn't be a good day to receive bad news (let's hope it's good eh?) but you would only fret about it over the Christmas period anyway.
If the results come back as PCa at least you will know where you stand. You will likely be given a Gleason score which will help with decisions regarding treatment, but please don't start panicking.
We are here as usual if you want to discuss things, even on Christmas Eve there will be people around I'm sure.
Please keep us posted. I take it you did obtain the Toolkit so will have a bit of an idea of possible treatments. Make sure when they call that you get a number to ring them back on because you are bound to have questions that won't occur to you at that time.
Good luck X
We can't control the winds - but we can adjust our sails |
User
Hi Neville.
You have similar numbers to my OH. His psa was 9.2, he was 58 at diagnosis.
His Pca was contained and therefore operable.
My father also has Pca. He was 61 at diagnosis, psa 38, local spread. (He's still very much alive and well 15 years on).
My point being that maybe these psa scores will give you some idea of what to expect in your phone call. It doesn't always follow, but prepare for bad news and if it's not, you can rejoice and move on.
The pad and paper is essential. Write down your questions before hand. If there is a diagnosis of Pca, I would suggest you want to know the following
Gleason score
What percentage of cores were positive
What next
I shall keep everything crossed for you
Louise
User
Hi Neville,
Not good news to receive at any time of the year.
Once the MRI and bone scan results are back you will have a clearer idea of what treatment plans you need to focus on.
Meantime, try to enjoy your Christmas.
Best Wishes
Luther
User
Sorry the news wasn't better Neville, but at least you know what you are dealing with now.
I don't suggest you do it over the Christmas period but if you haven't done so yet, then download the Toolkit.
Not easy I know, but it isn't going anywhere so try and put it to the back of your mind and get Christmas out of the way.
If you are pondering things and want answers or advice then post. I'm sure there will be somebody around to reassure you.
I hope that you and your family can have some semblance of a reasonably happy Christmas.
Best Wishes to you all.
Sandra
We can't control the winds - but we can adjust our sails |
User
Hi Neville
So sorry to hear your results.
The scans will be to see if there is any spread before they decide on the optimum treatment for you.
Not easy but try to enjoy Xmas. This whole disease is a waiting game.
Best wishes
Chris
User
Hi Neville, just seen your update sorry it's not good news. It's very hard especially this time of the year my husband going into hospital on Monday for surgery feels very surreal at present but support here is great. Take care Jayne.
User
Hi Neville,
Just as well you initiated the process by seeing your GP when you did. Your symptoms served as a good prompt. Not all men that have PCa have worrying symptoms and their cancer sometimes advances without their knowledge. Wish you well on your cancer journey.
Barry |
User
Hello Neville
I'm sorry it was the news you feared it would be.
The figures are very similar to my husband. He had a Gleason 7, upgraded to a 9 on pathology. He had surgery 12 months ago. Latest psa test four weeks ago was undetectable.
The good news is that if they are offering you surgery as an option, they consider it curable. Try and hold on to that.
Sending you best wishes
Louise x
User
Neville
Lordy lord...not what you needed to hear
But...
Maybe not the best news but a T2 is better than a T3 or 4.
I would say the gleason 9 is why AS is not an option.
Still time to sit back and consider options that might be open to you.
Sometimes that takes a lot of patience and resolve .
Unfortunately timing could not be worse in terms of holidays so I just hope you can try to enjoy Christmas and them deal with all this in the New Year.
I wish you all the best
Xx
Mo
User
Sorry to hear your news mate. We are all rooting for you, please try to ignore at this special time and enjoy the now.
Kev
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
User
Neville, not good news for you and family. Very sorry to hear results have gone the wrong way, try to stay positive through Christmas and new year and enjoy as best you can.
My thoughts are with you.
Regards Chris/Woody
Life seems different upside down, take another viewpoint.
User
Hi neville
Stay focused and try to be positive - I had my surgery on 11 December and I am feeling pretty good - everyone on the forum is thinking about you
User
Hi Neville just catching up as been very busy since Paul's operation last Tuesday. It is horrible waiting for results but once your consultant has all the facts you will be surprised at how quickly your treatment plan will be sorted and you can start to get your head round what is happening to you. Keep us updated, there is always support here for you and your family. Jayne
User
Good luck with your results Neville. The waiting is always nerve wracking
We can't control the winds - but we can adjust our sails |
User
Good luck with the treatment Neville. It's not nice that it has spread outside the prostate but it is excellent news that it has not got to the bones. Hopefully the RT and Hormone Therapy will be the belt and braces job to keep it contained.
User
Hello Neville
You seem to have similar diagnosis to me. I was on HT and have had 37 sessions of RT
Have a look at my profile to see where I was at diagnosis and where I am now
Be encouraged
Best wishes
Arthur
Show Most Thanked Posts
User
Hi Neville, welcome to this site and you are at the right place to get information as there are a whole host of folk here that have far more knowledge than myself but for the record I also suffered frequent peeing at night which led to a visit to my GP. He put me on Tamsulosin straight away to try and resolve the problem, after three months I went back to him and he kept me on Tamsulosin gave some other pills as well and suggested a blood test at the hospital to "rule things out".
I had no idea at that time what he wanted to rule out.. To cut a long story short I had PSA of 63, had MRI scan, bone scan and later on 12 targeted bi-opsies (by the way this did not hurt, just slightly uncomfortable) and in Feb this year was diagnosed with PCa that was aggressive but confined to the prostate.
I was told that the best treatment plan was Hormone therapy for 2 years and Radio therapy after three months of HT.
Blood test before RT was down to 0.5
Have finally (had a few problems not linked to PCa) completed RT and waiting for results of first blood test to check PSA level.
It is normal to feel nervous and bemused by the diagnosis but try to stay focused on what you have and what you are told at each stage of your treatment. Take someone with you to be a second pair of ears and write a list of questions to ask the specialists at each visit.
My personal way of coping is to stay positive and deal with things as they present themselves rather than worry about things that may or may not affect you and another thing is do not bury your head in the sand but talk with someone to help take the pressure off and prevent the build up of stress.
You can download the toolkit from this site or get one sent to you, it will give you most of the information that you need.
Do not be afraid to ask any question whatsoever as there is a wealth of knowledge here from those that have PCa, their Other halves (OH) and those that have studied PCa deeper.
I am sure you will get answers from others.
Regards Chris/Woody
Life seems different upside down, take another viewpoint
User
Good morning Neville and welcome
Chris/Woody has said it really but I would emphasise the idea of obtaining The Toolkit from this site's publications section.
They are a set of booklets which describe symptoms, treatments and emotional feelings and also helpful addresses.
8.2 is a little high but not the highest by a long long way for some men on here.
Once you've had the biopsy (~and by the way my husband's experience was the same as Chris', uncomfortable rather than painful - the aftermath can be a bit drastic though with blood in the urine and semen as well as some bad bruising so be prepared for that) things will be made a little clearer to you by the consultant.
Shock and disbelief are the first normal reactions. These will fade and you will get to grips with it all, with the help and support from the members on this site.
Ask any questions that you like, whatever pops into your head and worries you. Nothing is regarded as stupid or obvious. If you don't know and want to know, then ask away.
Best Wishes
Sandra
We can't control the winds - but we can adjust our sails |
User
Thanks for your reply Chris . I will take your advice , I am getting the tool kit and I will try and be positive as I can.
Neville
User
Thanks Sandra I have applied for the tool kit.
Neville
User
Hi Neville
Agree totally with Chris. One thing to rely on with this site is that anyone who says "Try not to panic" is saying that with the benefit of experience, so it is not just a throw-away statement. Also, taking someone else along to see consultants is a very good idea, together with a list of points to raise about the diagnosis and treatment. It is very easy for your mind to go blank at a time like that.
In addition to the toolkit, have a browse around this site using the search facility. You will find a wealth of personal experience, but please note that most of us are not medically qualified and so, ethically, cannot recommend any particular course of action or treatment. Generally, click on usernames on the left of the screen to go to the personal history of the relevant users.
Watch out for abbreviations (I hope my spelling is good...):
RT = Radio Therapy
HT = Hormone Therapy
RP = Radical Prostatectomy (generally, used for open surgery but really just means that the prostate has been removed)
LRP = Laparoscopic Prostatectomy
RRP = Robot-assisted Prostatectomy
BPH = Benign Prostatic Hypoplasia (swollen prostate but no cancer)
TURP = Trans-Urethral Resection of the Prostate - a small operation sometimes used to relieve BPH.
and IF you are found to have it, Prostate Cancer often appears as PCa.
IF the diagnosis does show that you have it, remember it is NOT the end of the road. Many, many, many men survive and continue to enjoy a full life.
Hope this helps!
Tony
TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015. |
User
Hi Neville,
Just wanted to welcome you to the site.
Whatever is revealed by the tests, this is the best place to find support.
A diagnosis of Prostate Cancer doesn't have to be the end of the world. This cancer is very slow growing in many cases and often very treatable.
It's natural to worry if you hear the word cancer (I did) but try not to.
Wishing you all the best.
Steve
User
Thanks I was confused by all the abbreviations and thanks for good wishes and advice Steve and Tony.
User
I am new to the site as well.
Cannot add anything to what others have said.
Another abbreviation for you - AS - active surveillance, (which the toolkit will explain) but basicly means regular blood tests and scans, to keep an eye on things.
Best of luck with your tests and biopsies, lots of support here.
all the best
User
Thanks Tez.. good luck to you aswell.
User
Hi there,
Yes it is scary & its the waiting & not knowing which is the hardest. Mine was found quite by chance after a urine infection occurred twice in a month. My PSA was 4.1.
I toddled of for a biopsy & the results came back positive for cancer. I then went for a MRI scan & they identified it was very near the centre of the prostate. After chatting with my consultant I opted for Active Surveillance. Now everyone is different but this really did not sit well with me once i started it. It played on my mind & so 6 months on i decided to have the surgery. I found a very good surgeon who could offer the robotic procedure & after a couple of visits I was booked in for the op.
That was almost 4 months ago & i have not looked back. I am in a far better place now, no cancer, mentally happier & looking forward to the future for the first time in probably 2 years.
Good luck with the results & what ever the outcome you will at least know where you stand & will be able to make a decision that suits you.
To reiterate probably the hardest part is the waiting...
User
Thanks tonypw for the abbreviations, its a great help
User
I have had a date for my biopsy which is December the 17th.
I have been reading Tool Kit and have overloaded myself with all the info and am now a bit confused and to be honest a bit scary.
Neville
User
Well good luck with the biopsy Neville.
Hope it all goes well for you.
If you feel overloaded and confused then please ask about whatever it is that needs clarifying and someone will do that for you. Sometimes, in our search for knowledge we get a bit ahead of ourselves. Until you have your biopsy results you won't really know what aspects need researching so take a step back and relax.
As for the scared bit - well, it goes with the territory doesn't it.
You are not alone in feeling that I can assure you.
Please let us know how we can help with questions
Edited by member 05 Dec 2015 at 09:47
| Reason: Not specified
We can't control the winds - but we can adjust our sails |
User
Thanks Johan, I think I need to take a step back and wait for biopsy results. I am sure I will ask a couple of questions before my biopsy.
Neville
User
hi neville
it seems you have taken a lot on board and looking at to many of the what if's, as already said just sit tight and wait for the results, its not easy to do but we have no choice, you will then be able to understand a bit more as to where you can start dealing with all what is happening, keep us all posted on the biopsy their will be someone on here who will be able to help
regards
nidge
run long and prosper
'pooh how do you spell love' 'piglet you dont spell love -you just feel it' |
User
I had my biopsy today. It was uncomfortable but not as painful as I expected.
I had a choice of having results at hospital with appointment which would have been about 3 weeks or I could have a phone consultation on Christmas eve between 9am and 11am. So I choose a phone consultation .
Consultant said next stage of action will be doscussed after results. And I should stay home t take call as I would be given Important information and possibly be told I have cancer.
sorry to ramble on... I know just have to wait a week to find out.
thanks for taking time to read .
Neville
User
Hi neville
When you get the phone call make sure you have a pen and paper at hand to write down what is said
If you need to ask them to repeat it do so
Make sure you have someone else with you when you take the call its always good to have the extra support
You will have alot going through your head in the next week
We will all be here to help you
Regards
Nidge
run long and prosper
'pooh how do you spell love' 'piglet you dont spell love -you just feel it' |
User
Hi Neville glad the bi-posed went ok, it's a bummer waiting for results but fingers crossed and a bit of good luck you may get a good Xmas pressie but if not you will have time to think of the impact and decide what to do, ie treatment options, keep posting here and you will get good advice for whatever is put to you from all on this forum.
Best wishes, Chris/Woody
Life seems different upside down, take another viewpoint
User
Hello again Neville
Well Christmas Eve wouldn't be a good day to receive bad news (let's hope it's good eh?) but you would only fret about it over the Christmas period anyway.
If the results come back as PCa at least you will know where you stand. You will likely be given a Gleason score which will help with decisions regarding treatment, but please don't start panicking.
We are here as usual if you want to discuss things, even on Christmas Eve there will be people around I'm sure.
Please keep us posted. I take it you did obtain the Toolkit so will have a bit of an idea of possible treatments. Make sure when they call that you get a number to ring them back on because you are bound to have questions that won't occur to you at that time.
Good luck X
We can't control the winds - but we can adjust our sails |
User
Hi Neville.
You have similar numbers to my OH. His psa was 9.2, he was 58 at diagnosis.
His Pca was contained and therefore operable.
My father also has Pca. He was 61 at diagnosis, psa 38, local spread. (He's still very much alive and well 15 years on).
My point being that maybe these psa scores will give you some idea of what to expect in your phone call. It doesn't always follow, but prepare for bad news and if it's not, you can rejoice and move on.
The pad and paper is essential. Write down your questions before hand. If there is a diagnosis of Pca, I would suggest you want to know the following
Gleason score
What percentage of cores were positive
What next
I shall keep everything crossed for you
Louise
User
Just had phone call with results of my Biopsy.
consultant conformed I do have cancer, he is arranging for me to have a bone scan and an MRI scan within the the next ten days.
My Gleeson score was 9 (4+5) and at stage T2', but needs the MRI and bone scan to confirm this.
He discussed various treatments including surgery and radiotherapy and said that active surveillance was not an option.
Merry Christmas All
Neville
User
Hi Neville,
Not good news to receive at any time of the year.
Once the MRI and bone scan results are back you will have a clearer idea of what treatment plans you need to focus on.
Meantime, try to enjoy your Christmas.
Best Wishes
Luther
User
Sorry the news wasn't better Neville, but at least you know what you are dealing with now.
I don't suggest you do it over the Christmas period but if you haven't done so yet, then download the Toolkit.
Not easy I know, but it isn't going anywhere so try and put it to the back of your mind and get Christmas out of the way.
If you are pondering things and want answers or advice then post. I'm sure there will be somebody around to reassure you.
I hope that you and your family can have some semblance of a reasonably happy Christmas.
Best Wishes to you all.
Sandra
We can't control the winds - but we can adjust our sails |
User
Hi Neville
So sorry to hear your results.
The scans will be to see if there is any spread before they decide on the optimum treatment for you.
Not easy but try to enjoy Xmas. This whole disease is a waiting game.
Best wishes
Chris
User
Hi Neville, just seen your update sorry it's not good news. It's very hard especially this time of the year my husband going into hospital on Monday for surgery feels very surreal at present but support here is great. Take care Jayne.
User
Hi Neville,
Just as well you initiated the process by seeing your GP when you did. Your symptoms served as a good prompt. Not all men that have PCa have worrying symptoms and their cancer sometimes advances without their knowledge. Wish you well on your cancer journey.
Barry |
User
Hello Neville
I'm sorry it was the news you feared it would be.
The figures are very similar to my husband. He had a Gleason 7, upgraded to a 9 on pathology. He had surgery 12 months ago. Latest psa test four weeks ago was undetectable.
The good news is that if they are offering you surgery as an option, they consider it curable. Try and hold on to that.
Sending you best wishes
Louise x
User
Neville
Lordy lord...not what you needed to hear
But...
Maybe not the best news but a T2 is better than a T3 or 4.
I would say the gleason 9 is why AS is not an option.
Still time to sit back and consider options that might be open to you.
Sometimes that takes a lot of patience and resolve .
Unfortunately timing could not be worse in terms of holidays so I just hope you can try to enjoy Christmas and them deal with all this in the New Year.
I wish you all the best
Xx
Mo
User
Sorry to hear your news mate. We are all rooting for you, please try to ignore at this special time and enjoy the now.
Kev
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
User
Neville, not good news for you and family. Very sorry to hear results have gone the wrong way, try to stay positive through Christmas and new year and enjoy as best you can.
My thoughts are with you.
Regards Chris/Woody
Life seems different upside down, take another viewpoint.
User
Hi neville
Stay focused and try to be positive - I had my surgery on 11 December and I am feeling pretty good - everyone on the forum is thinking about you
User
Happy New Year everyone.
Yesterday I had an intravenous urography, I also have dates for a bone scan and also MRI scan on 18th and 22nd January.
Just have to wait for these results to see what treatment I need to focus on.
Neville
User
Happy New Year to you too Neville.
2016 will be the start of your new life and a different you in some respects but you'll be around to enjoy many more I'm sure.
Good luck with the scans and the result of the urography.
Please keep us posted and as usual we will all be rooting for you.
All the best
Sandra
We can't control the winds - but we can adjust our sails |
User
Hi Neville,
just wanted to say good luck on the scans. Its a worrying time but sounds like you're getting everything done that needs doing and then once results are in, it can focus your mind. I was dx six months ago and found the site really useful and people so helpful when needing to get the information regarding the scans and what maybe ahead. Six months later I am going through the chemo and HT but at least I know what to expect and what some others have gone through and can relate it to myself.
All the best.
steven
User
Hi Neville just catching up as been very busy since Paul's operation last Tuesday. It is horrible waiting for results but once your consultant has all the facts you will be surprised at how quickly your treatment plan will be sorted and you can start to get your head round what is happening to you. Keep us updated, there is always support here for you and your family. Jayne
User
Neville
Definitely moving along steadily.
Remaining tests all seem to be booked up and then there will be a rather anxious time waiting for results and treatment options.
Let us know how it all goes
xx
Mo
User
I have appointment next week to get results of Intrevenous Urology , Bone scan and MRI Scan.
Just hoping cancer has not spread and then to get treatment options.
I just want to find out now the wait seems so long.
Neville
User
Good luck with your results Neville. The waiting is always nerve wracking
We can't control the winds - but we can adjust our sails |
User
Seen consultant today. Bone scan not showing any signs of cancer in bones.
MRI scan shows cancer has spread outside of prostrate ,
Operation is not .an option so he has given me Bicalutamide 50mg tablets and I hav e to go to my GP in 2 weeks for injections which will be every 3 months and I will be starting Radiotherapy in approx 8 weeks time .
Neville
User
Good luck with the treatment Neville. It's not nice that it has spread outside the prostate but it is excellent news that it has not got to the bones. Hopefully the RT and Hormone Therapy will be the belt and braces job to keep it contained.
User
Hello Neville
You seem to have similar diagnosis to me. I was on HT and have had 37 sessions of RT
Have a look at my profile to see where I was at diagnosis and where I am now
Be encouraged
Best wishes
Arthur
User
I had my first 3 monthly injection today for hormone therapy, it was zoladex implant, and i have appointment with oncologist on 15th of April,
Just waiting .....
Neville
User
Had my appointment with oncologist on Friday, she said she wanted me the on Hormone therapy for about 6 months then Will start radiotherapy in August.
arranged for a CT scan to check from neck down ( not sure why but in sure it was explained at time ).
I also had a further PSA blood.test and nurse phoned today and told me that PSA had dropped to 1.1 ( was previously 8.2). so I am delighted with that.
MY red cells were a bit low , now I just have to wait for my CT scan then radiotherapy.
also I asked staging and it was T3A N1 and M0
Neville
Edited by member 18 Apr 2016 at 13:30
| Reason: Not specified