I'm glad that helped. Next thing to be discussed will be TxNxMx the x's are numbers.
After the T it will be either 1,2,3,4 sometimes with a letter as well. 1 and 2 mean contained in the prostate. T3a means possibly just outside the prostate, but still very much attached to the original tumour, T3b a little further outside the prostate but still very much attached to the original tumour. Often the a and b are not quoted. These T3’s are referred to as locally advanced, it is still curable. T4 means the tumour is invading other organs like the bladder this would be referred to as advanced and is unlikely to be curable. As most of his cores had cancer, T3 is quite likely.
N is for lymph nodes. N0 means all clear, N1 means at least one lymph node cancerous.
M1 means new tumours distant from the original tumours, this would also be called advanced. M0 means all clear. With a clear bone scan he is probably M0, but CT scan needed to confirm.
The CT scan will check lymph nodes and other organs. With a PSA under 30 he will probably come back T3N0M0, If his PSA were over 100 he would probably come back T4N1M1, but PSA is too unreliable to make anything but the roughest prediction. We have had PSAs as high as 80 with no cancer, and PSA below 4 but extensive cancer.
Please note I am not a medic. The distinction between T3a, T3b and T4 may be slightly different in different hospitals. This site has many well informed amateurs, but only his medics can give you the most accurate information.
Good luck with the meeting, let's hope all those xs are low.
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Can you say what his Gleason score is? It's simpler to explain one score than it is to try and explain all possible scores because we don't know which one applies. Gleason score roughly maps on the the aggressiveness of the cancer.
If you can give his full diagnosis, that would help too.
User
Wellcome aboard. It is no surprise you are confused by the Gleason grade/score system. The old way of presenting it was two numbers each called a Gleason Pattern added together this was called the Gleason score. The new way of presenting it is one number which is now called the Gleason Grade group.
Patterns have the numbers 1 to 5 featuring prominently. Patterns 1 and 2 are not considered cancer.
Scores have the numbers 6 to 10 featuring prominently. Anything below 5 would not be considered cancerous (as it could only be made up of pattern 2 or below) (for historic reasons Score 5 is reported as being score 6).
Grades have the numbers 1 to 5 featuring prominently.
The following link gives some way of converting between them.
https://www.cancerresearchuk.org/about-cancer/prostate-cancer/stages/grades
Your husband has a Grade group 4 Which would equate to a Gleason Score of 8, which is likely due to them finding an equal amount of Gleason Pattern 4 in all the cancerous samples (strictly speaking it could be some pattern 5 and pattern 3 which adds to 8 but that never happens in practice).
A Gleason score of 4 would be two Pattern 2s added together and would never be considered cancerous. So would not even warrant surveillance.
A Gleason Grade 4 is considered High Risk. It is not considered Advanced unless it has spread beyond the prostate.
High risk cancer can be treated and cured, advanced cancer is unlikely to be cured but can be managed for many many years.
Nothing in the diagnosis suggests his cancer is advanced.
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Hello Dave, thank you so much for explaining it , I felt I couldn't get a grasp of what they meant,and any research I did just confused me and I'm afraid I panicked. We have a meeting with his consultant next week and I wanted to have some knowledge of what they will be discussing.
User
Hi Willow,
Dave has given you and excellent description of grading. It is indeed all quite confusing but your CNS should be able to help, so please get in touch with them with any questions. The Specialist nurses that you can phone on here are also amazing, don’t hesitate to call them.
I know I am always banging on about Maggies😊, but if you’re struggling to cope, and yes I can understand why you’re terrified, we all are when diagnosed and waiting DEFINITELY is the worst part…as time goes on you kind of learn how to deal with it. If your husband is willing, both of you go along and speak to them at your local Maggies Centre, it really will help and there will like be a support Group that your husband could join. I thought Maggies wasn’t for me and I would deal with it in my own way, but joining the support group was the best thing I have done on this journey. Don’t think it’s all doom and gloom, far from it, there are many men that have great success stories and will support and offer help and advice from personal experience.
Good luck to both of you and try and stay positive…..and both of you be good to yourselves.
Derek
User
Hi Decho, yes we have a CNS I have called her today, thanks for the advice.
User
Hi Steve,
Ht/RP..... It all is dependent on the situation with his lungs, but he doesn't want the side effects of the surgery, he's 55 .
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Can you say what his Gleason score is? It's simpler to explain one score than it is to try and explain all possible scores because we don't know which one applies. Gleason score roughly maps on the the aggressiveness of the cancer.
If you can give his full diagnosis, that would help too.
User
Hi Andy, thank you for your reply .. the consultant said it was a gleeson 4 , biopsy results were 9 cores taken on right side ,5 were positive, 9 cores taken on left side 3 were positive. (These were given over a telephone consultation) PSA is 18
Needs radical treatment/surgery , it can't be left..... Waiting on results from CT scan , bone scan is clear.
My question isa gleeson score of 4 is usually put under surveillance where a grade 4 is classed as advanced .. Is this correct ?
Edited by member 07 Aug 2023 at 00:25
| Reason: Not specified
User
Wellcome aboard. It is no surprise you are confused by the Gleason grade/score system. The old way of presenting it was two numbers each called a Gleason Pattern added together this was called the Gleason score. The new way of presenting it is one number which is now called the Gleason Grade group.
Patterns have the numbers 1 to 5 featuring prominently. Patterns 1 and 2 are not considered cancer.
Scores have the numbers 6 to 10 featuring prominently. Anything below 5 would not be considered cancerous (as it could only be made up of pattern 2 or below) (for historic reasons Score 5 is reported as being score 6).
Grades have the numbers 1 to 5 featuring prominently.
The following link gives some way of converting between them.
https://www.cancerresearchuk.org/about-cancer/prostate-cancer/stages/grades
Your husband has a Grade group 4 Which would equate to a Gleason Score of 8, which is likely due to them finding an equal amount of Gleason Pattern 4 in all the cancerous samples (strictly speaking it could be some pattern 5 and pattern 3 which adds to 8 but that never happens in practice).
A Gleason score of 4 would be two Pattern 2s added together and would never be considered cancerous. So would not even warrant surveillance.
A Gleason Grade 4 is considered High Risk. It is not considered Advanced unless it has spread beyond the prostate.
High risk cancer can be treated and cured, advanced cancer is unlikely to be cured but can be managed for many many years.
Nothing in the diagnosis suggests his cancer is advanced.
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User
Hello Dave, thank you so much for explaining it , I felt I couldn't get a grasp of what they meant,and any research I did just confused me and I'm afraid I panicked. We have a meeting with his consultant next week and I wanted to have some knowledge of what they will be discussing.
User
I'm glad that helped. Next thing to be discussed will be TxNxMx the x's are numbers.
After the T it will be either 1,2,3,4 sometimes with a letter as well. 1 and 2 mean contained in the prostate. T3a means possibly just outside the prostate, but still very much attached to the original tumour, T3b a little further outside the prostate but still very much attached to the original tumour. Often the a and b are not quoted. These T3’s are referred to as locally advanced, it is still curable. T4 means the tumour is invading other organs like the bladder this would be referred to as advanced and is unlikely to be curable. As most of his cores had cancer, T3 is quite likely.
N is for lymph nodes. N0 means all clear, N1 means at least one lymph node cancerous.
M1 means new tumours distant from the original tumours, this would also be called advanced. M0 means all clear. With a clear bone scan he is probably M0, but CT scan needed to confirm.
The CT scan will check lymph nodes and other organs. With a PSA under 30 he will probably come back T3N0M0, If his PSA were over 100 he would probably come back T4N1M1, but PSA is too unreliable to make anything but the roughest prediction. We have had PSAs as high as 80 with no cancer, and PSA below 4 but extensive cancer.
Please note I am not a medic. The distinction between T3a, T3b and T4 may be slightly different in different hospitals. This site has many well informed amateurs, but only his medics can give you the most accurate information.
Good luck with the meeting, let's hope all those xs are low.
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User
Hi Dave,
Thank you again, I understand what you say about not being a medic..but having someone explain things clearly who has gone through the process helps enormously. Having an understanding about the terminology that will be used and next steps takes away a little bit of fear. To be honest I'm terrified for him, for us and for our future . This forum has been really helpful to me over the past 6 months as we have ploughed our way through the process of tests.....the waiting for results is the worst part.
Thank you again for your help
User
Hi Willow,
Dave has given you and excellent description of grading. It is indeed all quite confusing but your CNS should be able to help, so please get in touch with them with any questions. The Specialist nurses that you can phone on here are also amazing, don’t hesitate to call them.
I know I am always banging on about Maggies😊, but if you’re struggling to cope, and yes I can understand why you’re terrified, we all are when diagnosed and waiting DEFINITELY is the worst part…as time goes on you kind of learn how to deal with it. If your husband is willing, both of you go along and speak to them at your local Maggies Centre, it really will help and there will like be a support Group that your husband could join. I thought Maggies wasn’t for me and I would deal with it in my own way, but joining the support group was the best thing I have done on this journey. Don’t think it’s all doom and gloom, far from it, there are many men that have great success stories and will support and offer help and advice from personal experience.
Good luck to both of you and try and stay positive…..and both of you be good to yourselves.
Derek
User
I think you have all the information from Dave and Derek which is spot on!
Next he will likely be offered a RARP procedure - Robot Assisted Radical Prostatectomy.
This is a straightforward procedure that many of us have had and is usually a 2 night stay in hospital. They use a robot guided by the surgeon to remove the prostate and usually 2 or 3 lymph nodes. He will have 4 tiny scars and 1 2" scar above his navel. He will be fitted with a catheter which will remain in place for 7-10 days and when removed he will have some incontinence which should improve over time. If they are able to save the nerves then he will suffer from Erectile Disfunction for up to a year but this will respond to various treatments. If, like me, they cannot save the nerves then the ED will be permanent but there are plenty of options in the bedroom to ensure this does not become an issue.
Once the prostate is removed then the PSA should be almost zero and he will be on 6 month checkups to ensure that any cancer cells have not been left behind. If they are, then Hormone Therapy and/or Radiation Therapy will be available to fix those in the future.
The hardest part is the mental side - worrying about the unknown. The physical side is very straightforward, relatively painless and he will be up and about the next day, albeit slowly.
Wishing him and you the best of luck
Steve
User
Gleason score of 4 does not require any treatment which contradicts what you have been told about your husband needing radical treatment - something not right and you need clarification. It is natural that you are very worried. If he has prostate cancer, depending on the severity of the disease, he can expect to be cured or expect to lead an active life for many years. Since I was diagnosed and treated successfully 12 years ago, there are many more well proven treatments and you and your husband can be very optimistic about the outcome.
'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.' Richard Feynman (1918-1988) Nobel Prize laureate |
User
Hello , thank you for your reply, they just said it was gleeson 4 which could have been grade or score , that was why I questioned it and asked for advice. They said that it was a form of cancer that could not be left and needed radical treatment , which didn't add up to what I had read about a score of 4. Obviously we will be asking the question when and if we get a face to face appointment, the advice I have been given so far has been amazing and I can't thank everyone enough, i now feel I will be able to understand and be confident in supporting my husband .
Thank you all .
User
Hello Steve, thank you for replying, they have mentioned a RARP already , I'm hoping this next consultation will be to discuss a treatment plan.
User
Thanks Willow
Yes, I think there is probably some confusion as a Gleason score is usually given in the form of 4+3=7 so I believe that the 4 refers to the grade which I think someone else has already mentioned equates to a Gleason score of 4+4=8 or maybe 4+3=7.
It seems to be a typical diagnosis for men who are seeking treatment for a rising PSA < 20 but that's just my opinion.
I was offered either brachytherapy or RARP and went the RARP route as I wanted the bugger out of me - it was fortunate that I did as when they examined the prostate in the laboratory, they updated the Gleason to 4+5=9 and the cancer was starting to grow outside of the prostate. My post-op PSA was <0.01 so now we just test every 6 months to see if any further treatment is needed.
User
You haven't got information for anyone to give you useful help. If the Gleason score is 4 then he needs no treatment which contradicts what you have said about your husband needing radical treatment. If the consultant has said he needs treatment his Gleason score must be at least 6 or more and needs other information like is the cancer confined to the prostate, are the margins clear etc. You need clarification so that you can begin to think about any treatment. Nowadays depending on the severity of the disease there are treatments available which can provide a 'cure' or extend his active life by many years. I had surgery 12 years ago and my PSA results show that I am 'cured', for now. Good luck.
'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.' Richard Feynman (1918-1988) Nobel Prize laureate |
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Hi Pratap, thank you for your input, but as I stated there is a score 4 and a grade 4 which the consultant didn't explain clearly , hense my confusion fortunately others have been able to explain it for me . I'm keeping my fingers crossed but I fear it will be a grade 4 .Thank you again
Regards
Willow
Edited by member 07 Aug 2023 at 17:25
| Reason: Spelling
User
Have you not been allocated a Clinical Nurse Specialist(CNS)? If so, give them a call and they will be able to help you.
User
Hi Decho, yes we have a CNS I have called her today, thanks for the advice.
User
Hi thank you all for your kindness, he's started hormone therapy, he's been told t3a , no evidence of anything in any organs except nodules in lungs
User
Is he expecting the RARP or are they going the HT/RP route? I would have thought that with a T3a that a RARP would still be on the cards but I'm no expert.
User
Hi Steve,
Ht/RP..... It all is dependent on the situation with his lungs, but he doesn't want the side effects of the surgery, he's 55 .