Hello Jonny and welcome.
Firstly a big breath in !! Just because you have Prostate cancer does NOT mean that you are going to die at 69!!
If you give us your MRI and Gleason scores when you get them, it would be very helpful when members are trying to advise you.
There are many treatments for PC, radiotherapy being one of them. Until you have the MRI and bone scans nobody can say at what stage your cancer is. Have you already had a PSA? What was the result.
We have many members on here having been treated for cancer and who have been given an incurable result but they are living their lives to the full and have every intention of living for a long time.
When you get that first diagnosis it frightens you and it's all you can think about and dwell on. Please try not to worry at this stage. Cancer is a horrible word but it doesn't mean automatic death for you.
On this site we have a set of leaflets called The Toolkit. It's in the Publications section and you can download it. At this stage the information might not be too relevant because you don't know for definite yet what treatment you will need or what is best for you but they will be handy to have ready. Please try to avoid Dr Google as he isn't always reliable!
When you go for the appointment following the MRI and bone scans, take somebody with you if you can and try and write down relevant questions before you go. You'll be in such a panic waiting for the results you won't take in half of what it said to you.
You will cope I'm sure, once you get your head round this diagnosis. We all do because we don't have any choice.
Do you have a partner you can share your fears with?
There will be many on here to support you. You are no longer alone.
Keep that chin up. There is nothing you can do for now but we do all know that this waiting time is the worst. Once you have your results and treatment starts it becomes your new normal.
It's true that life will never be the same again, but some on here will tell you that they have become closer to their wives and partners because of the diagnosis.
The one advice I would give is that you do not let yourself be persuaded to undertake a treatment unless you have researched it first. RT may well be the best (and only) treatment available to you. It might not. There are others out there just as effective. ~The secret is to not panic and go with the first option given to you.
Best Wishes
Sandra
We can't control the winds - but we can adjust our sails |
User
Hi Jonny,
Sorry you join us due to having been diagnosed with Prostate Cancer (PCa).
Being shell shocked is what almost everybody diagnosed with PCa feels and worry that you have not got long to live. However, please do not jump to conclusions, you have not yet had your full diagnosis and your cancer may be contained and a good outcome achieved. Even looking at the worst scenario, where the cancer has spread, treatments, (which are continually being refined), are stopping or slowing cancer advancing. We have a number of members here who are still doing OK after 10 years from diagnosis - I am one of them and my cancer on diagnosis was locally advanced. Another thing to remember is that at 69, if that is your present age, about two thirds of men will have PCa, many of them without symptoms and not knowing it but most will die of something else.
I suggest you obtain the 'Tool Kit' which is available from the publications section of this charity. It provides some very useful information and details on the pros and cons of various treatments, though the latter can be influenced by age, how far the cancer has advanced and other factors. You have mentioned radiotherapy (RT) as being offered and should this be the treatment that you with your consultant agree is the best option, I can advise that it doesn't hurt - its similar to having a long x ray and most men sail through it OK, maybe with small irritations. As with any treatment there can be differing side effects, particularly if Hormone Therapy (HT) also accompanies it.
Use the search facility or ask any questions. You can click on anyone's avatar to see their Profile and Bio which most people, detail.
It helps to come to terms if you learn more about the disease . I wish you well on your cancer journey.
Barry |
User
Hi Jonny,
I've had all you said; MRI, bone scan, TURP and RT. Throughout all this I had HT as well. I was only offered RT as my 'main' treatment, I must admit I accepted this without knowing of other treatments. The specialists obviously thought that was the best one for me.
I know it's hard but follow the advice of Sandra and Man with PC and order the toolkit. When you have your results post both on here and on your profile and others will come along with good advice for you.
Have a look at my profile to see how I came through the treatment etc.
Best wishes,
Arthur
User
Hi Jonny
I just wanted to add my welcome to you. We all know how you feel, really we do. You will find some peace once you know what you are dealing with. Look at some profiles to give you an India of how this cancer can go. My own hubby was diagnosed nearly 6 years ago at 61 years old, with spread and a Gleason 10. We thought that our life together was over but it was not and we are still here fighting this damned disease. John has had a TURP this year and it confirmed his Gleason score but somehow the cancer is still only spreading slowly.
The advice from the others is spot on, read good information,,take advice from your specialists and hold on tight. Things may not be as bad as you think.
Kindest regards
Devonmaid
User
Hi Jonny
My PCa was diagnosed from TURP residue, at least saving me from needing a biopsy. I was offered, and accepted prostate removal, carried out about five months after the TURP, and now, six years on, I am still alive and don't have cancer. The only slight downside was that the surgeon had some trouble joining the urethra and bladder neck because of the damage done by the TURP, but that just excercised his skill more than usual.
Like you, I was just staring down a deep black hole after diagnosis - really, it does get better.
Tony
TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015. |
User
Jonny I had RT at QE in 2005 ( as you can see by the year and my profile RT and HT worked well for me). You will be advised whether you need to empty your bowels ) me no) and drink water (me
yes). Then get called in, strip to pants, lay on bed. They then line you up using tattoos given about a week earlier. Then they leave the room and within a few minutes all done - painless. When I went you could have a car park pass so ask if you want one.
Ray
Edited by member 20 Sep 2016 at 19:14
| Reason: Not specified
User
Forgot the tips. Carry a container to pee in if travelling far. I went across town to Great Barr area with no issues. Allow time for machine breakdowns. If you have concerns ask the RT team as they will help.
User
Jonny
The principle was bowels empty, bladder full. We were told to drink a bootle of water about 45 minutes before the radiotherapy. Originally I got the water from the machine at the hospital but found that to be too cold so I brought a bottle from home.
As Ray says the treatment is painless. Fairly straightforward, they line you up on the table then the machine does the rest, probably takes no more than 10 minutes altogether.
Arthur
User
The format and procedure may well be the same but Ray would have had his RT in the old Birmingham QE building in 2005. Old? It seemed antediluvian when I visited it in 2007 for a second opinion but Ray did OK nevertheless. The replacement building and equipment is pretty cutting edge so should provide a better experience.
Barry |
User
Hi Jonny
I am being treated at the QE in Birmingham and cannot fault them, they have the latest cutting edge equipment and are not afraid to use it, and the consultants I have dealt with are very approachable.
Roy
User
Hi jonny my husband consultant is based at sandwell but he had his surgery at QE last December, the care he received was excellent as is the care of his Consultant who I cannot praise enough. Jayne
User
The age related PSA for your age is sub 5 but this could be increased somewhat after sex, cycling, other exertions or infection for a the affected time. Your PSA is nevertheless high but some cancers throw out high figures even for moderate amounts of cancer. When cancer has advanced this can run into thousands. What becomes important therefore is whether your cancer is still contained within the capsule, is locally advanced or advanced (spread elsewhere) and to what extent. I wouldn't get too hung up on just your PSA which is only one indicator of the disease and not a very reliable one at that.
Barry |
User
Hope you are doing OK Jonny? I have been told by a consultant friend of mine (not oncologist or radiologist) that Birmingham is a brilliant place. She had to find a good consultant for a family member with PCa and would choose QE Birmingham every time. Unfortunately I live in West Wales so a bit too far and difficult for me to get there due to devolved NHS in Wales but jsut want you to know it is a really good place for PCa.
Take care and keep in touch.
User
You should be fine driving Jonny - my husband had his radiotherapy each morning on his way to work. Some hospitals provide parking passes for patients having daily RT.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
As regards how men cope during RT, the vast majority of men seem to get through this with fairly minimal side effects, maybe affecting toilet routine and making you tired more quickly. Also, some men need to have to ask for an ointment to alleviate soreness in their nether regions at some point during RT. However, most men have HT at the same time so the combined effects have to be considered. There is only one person that I can recall on the forum that had to give up on RT due to the affect it had. Unfortunately, it is not possible to know how badly you will be affected in advance but take into account the degree of side effects currently experienced because of HT if you are on it. Personally, I had a 45 minute bus ride plus at least a 2 mile walk each way during my RT, (sometimes I chose to walk further using a different route). I could easily have driven 10 miles each way if a car had been available and I think most men on EBRT could manage this OK.
Barry |
Show Most Thanked Posts
User
Hello Jonny and welcome.
Firstly a big breath in !! Just because you have Prostate cancer does NOT mean that you are going to die at 69!!
If you give us your MRI and Gleason scores when you get them, it would be very helpful when members are trying to advise you.
There are many treatments for PC, radiotherapy being one of them. Until you have the MRI and bone scans nobody can say at what stage your cancer is. Have you already had a PSA? What was the result.
We have many members on here having been treated for cancer and who have been given an incurable result but they are living their lives to the full and have every intention of living for a long time.
When you get that first diagnosis it frightens you and it's all you can think about and dwell on. Please try not to worry at this stage. Cancer is a horrible word but it doesn't mean automatic death for you.
On this site we have a set of leaflets called The Toolkit. It's in the Publications section and you can download it. At this stage the information might not be too relevant because you don't know for definite yet what treatment you will need or what is best for you but they will be handy to have ready. Please try to avoid Dr Google as he isn't always reliable!
When you go for the appointment following the MRI and bone scans, take somebody with you if you can and try and write down relevant questions before you go. You'll be in such a panic waiting for the results you won't take in half of what it said to you.
You will cope I'm sure, once you get your head round this diagnosis. We all do because we don't have any choice.
Do you have a partner you can share your fears with?
There will be many on here to support you. You are no longer alone.
Keep that chin up. There is nothing you can do for now but we do all know that this waiting time is the worst. Once you have your results and treatment starts it becomes your new normal.
It's true that life will never be the same again, but some on here will tell you that they have become closer to their wives and partners because of the diagnosis.
The one advice I would give is that you do not let yourself be persuaded to undertake a treatment unless you have researched it first. RT may well be the best (and only) treatment available to you. It might not. There are others out there just as effective. ~The secret is to not panic and go with the first option given to you.
Best Wishes
Sandra
We can't control the winds - but we can adjust our sails |
User
Hi Jonny,
Sorry you join us due to having been diagnosed with Prostate Cancer (PCa).
Being shell shocked is what almost everybody diagnosed with PCa feels and worry that you have not got long to live. However, please do not jump to conclusions, you have not yet had your full diagnosis and your cancer may be contained and a good outcome achieved. Even looking at the worst scenario, where the cancer has spread, treatments, (which are continually being refined), are stopping or slowing cancer advancing. We have a number of members here who are still doing OK after 10 years from diagnosis - I am one of them and my cancer on diagnosis was locally advanced. Another thing to remember is that at 69, if that is your present age, about two thirds of men will have PCa, many of them without symptoms and not knowing it but most will die of something else.
I suggest you obtain the 'Tool Kit' which is available from the publications section of this charity. It provides some very useful information and details on the pros and cons of various treatments, though the latter can be influenced by age, how far the cancer has advanced and other factors. You have mentioned radiotherapy (RT) as being offered and should this be the treatment that you with your consultant agree is the best option, I can advise that it doesn't hurt - its similar to having a long x ray and most men sail through it OK, maybe with small irritations. As with any treatment there can be differing side effects, particularly if Hormone Therapy (HT) also accompanies it.
Use the search facility or ask any questions. You can click on anyone's avatar to see their Profile and Bio which most people, detail.
It helps to come to terms if you learn more about the disease . I wish you well on your cancer journey.
Barry |
User
Hi Jonny,
I've had all you said; MRI, bone scan, TURP and RT. Throughout all this I had HT as well. I was only offered RT as my 'main' treatment, I must admit I accepted this without knowing of other treatments. The specialists obviously thought that was the best one for me.
I know it's hard but follow the advice of Sandra and Man with PC and order the toolkit. When you have your results post both on here and on your profile and others will come along with good advice for you.
Have a look at my profile to see how I came through the treatment etc.
Best wishes,
Arthur
User
Hi Jonny
I just wanted to add my welcome to you. We all know how you feel, really we do. You will find some peace once you know what you are dealing with. Look at some profiles to give you an India of how this cancer can go. My own hubby was diagnosed nearly 6 years ago at 61 years old, with spread and a Gleason 10. We thought that our life together was over but it was not and we are still here fighting this damned disease. John has had a TURP this year and it confirmed his Gleason score but somehow the cancer is still only spreading slowly.
The advice from the others is spot on, read good information,,take advice from your specialists and hold on tight. Things may not be as bad as you think.
Kindest regards
Devonmaid
User
Hi Jonny
My PCa was diagnosed from TURP residue, at least saving me from needing a biopsy. I was offered, and accepted prostate removal, carried out about five months after the TURP, and now, six years on, I am still alive and don't have cancer. The only slight downside was that the surgeon had some trouble joining the urethra and bladder neck because of the damage done by the TURP, but that just excercised his skill more than usual.
Like you, I was just staring down a deep black hole after diagnosis - really, it does get better.
Tony
TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015. |
User
Thank you all so much. Slept on it trying to come to terms with all this. Got MRI in a weeks time jonny
User
Hello sorry not been good to day bone scan appoinment in. Can any tell me what happens when you have radiotherpy? i have got to go to Queen Elizabeth Birmingham any info please Jonny Hope you all well
User
Jonny I had RT at QE in 2005 ( as you can see by the year and my profile RT and HT worked well for me). You will be advised whether you need to empty your bowels ) me no) and drink water (me
yes). Then get called in, strip to pants, lay on bed. They then line you up using tattoos given about a week earlier. Then they leave the room and within a few minutes all done - painless. When I went you could have a car park pass so ask if you want one.
Ray
Edited by member 20 Sep 2016 at 19:14
| Reason: Not specified
User
Forgot the tips. Carry a container to pee in if travelling far. I went across town to Great Barr area with no issues. Allow time for machine breakdowns. If you have concerns ask the RT team as they will help.
User
Jonny
The principle was bowels empty, bladder full. We were told to drink a bootle of water about 45 minutes before the radiotherapy. Originally I got the water from the machine at the hospital but found that to be too cold so I brought a bottle from home.
As Ray says the treatment is painless. Fairly straightforward, they line you up on the table then the machine does the rest, probably takes no more than 10 minutes altogether.
Arthur
User
The format and procedure may well be the same but Ray would have had his RT in the old Birmingham QE building in 2005. Old? It seemed antediluvian when I visited it in 2007 for a second opinion but Ray did OK nevertheless. The replacement building and equipment is pretty cutting edge so should provide a better experience.
Barry |
User
Thank you. I think someone said Queen Elizabeth Birmingham is a good hospital. Thank you all for your comments. Sorry I am not very talkative but I just can't stop thinking about the words 'prostate cancer' they keep going over them in my head. So not a good friend to you all nice people. I must be very selfish only thing of my self a.so sorry. Jonny
User
Hi Jonny
I am being treated at the QE in Birmingham and cannot fault them, they have the latest cutting edge equipment and are not afraid to use it, and the consultants I have dealt with are very approachable.
Roy
User
Hi jonny my husband consultant is based at sandwell but he had his surgery at QE last December, the care he received was excellent as is the care of his Consultant who I cannot praise enough. Jayne
User
Hi everybody just managed to get my psa number from surgery. It means nothing to me it is 97 Is that bad? Jonny
User
The age related PSA for your age is sub 5 but this could be increased somewhat after sex, cycling, other exertions or infection for a the affected time. Your PSA is nevertheless high but some cancers throw out high figures even for moderate amounts of cancer. When cancer has advanced this can run into thousands. What becomes important therefore is whether your cancer is still contained within the capsule, is locally advanced or advanced (spread elsewhere) and to what extent. I wouldn't get too hung up on just your PSA which is only one indicator of the disease and not a very reliable one at that.
Barry |
User
Hope you are doing OK Jonny? I have been told by a consultant friend of mine (not oncologist or radiologist) that Birmingham is a brilliant place. She had to find a good consultant for a family member with PCa and would choose QE Birmingham every time. Unfortunately I live in West Wales so a bit too far and difficult for me to get there due to devolved NHS in Wales but jsut want you to know it is a really good place for PCa.
Take care and keep in touch.
User
Thanks Des and Barry had bone scan and MRI should get results this week!!! Going slowly mad waiting. Thanks for info on QE Birmingham . Just wondering if I would be able to drive myself the 10 miles there and 10 miles back after treatment. My wife doesn't drive and my children not local.
User
Thanks Des and Barry had bone scan and MRI should get results this week!!! Going slowly mad waiting. Thanks for info on QE Birmingham . Just wondering if I would be able to drive myself the 10 miles there and 10 miles back after treatment. My wife doesn't drive and my children not local.
User
You should be fine driving Jonny - my husband had his radiotherapy each morning on his way to work. Some hospitals provide parking passes for patients having daily RT.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
As regards how men cope during RT, the vast majority of men seem to get through this with fairly minimal side effects, maybe affecting toilet routine and making you tired more quickly. Also, some men need to have to ask for an ointment to alleviate soreness in their nether regions at some point during RT. However, most men have HT at the same time so the combined effects have to be considered. There is only one person that I can recall on the forum that had to give up on RT due to the affect it had. Unfortunately, it is not possible to know how badly you will be affected in advance but take into account the degree of side effects currently experienced because of HT if you are on it. Personally, I had a 45 minute bus ride plus at least a 2 mile walk each way during my RT, (sometimes I chose to walk further using a different route). I could easily have driven 10 miles each way if a car had been available and I think most men on EBRT could manage this OK.
Barry |
User
Hi everybody hope you all doing well and staying carm. Had bone scan and MRI 2 weeks ago ?.results and to see consultant 22 October but just had phone call from hospital to say need a prostate biopsy before then. Now I am really worried
User
MRI scan may have showed certain suspicious area(s) so biopsy to check check this. Will it be a Trus or transperineal template biopsy?
Barry |