So the hormones that you have started taking are probably tablets that disguise the testosterone in your body so that the cancer can't find it. When you start on the injections, these stop your body from producing testosterone and the tablets will probably stop. Some oncos like their patients to take the HT for 6 months before they start RT, this is because starved cancer cells are weakened which improves the effectiveness of the RT. More often, the HT is only for 3 months before the RT starts. Did the specalist say how long you would be taking HT after the RT? Some say 6 months, others insist on 2 or 3 years. I would think that this kind of detail will help you to decide whether RT / HT is the right choice for you. Just because you have started taking the tablets doesn't mean it is too late to choose surgery.
If the specialists say that in your case, either treatment will be equally effective then it all comes down to personal preference and approach to risk. For surgery, we have men here who were dry as soon as the catheter was taken out, and others who have been left permanently incontinent. There are members who got an erection within days or weeks of the p and others who will never have an erection again. With RT, there are men who breeze through it and men who are left with bowel or bladder problems. Most but not all side effects of HT are temporary.
You can download the toolkit from this charity or order a hard copy over the phone - it includes a list of potential side effects for each treatment and a list so that you can work through which side effects are more or less tolerable to you. People make different decisions; some would be put off by the side effects of 3 years of hormones but would be happy if it is only for 9 months, for example. Some strongly want the prostate out and on a petrie dish so that a full pathology can be done, while others are more worried about the risk of ED and incontinence.
If you call the nurses on the number at the top of the page, they may be able to put you in touch with other men that have made these choices and can talk through with you. Or maybe ask to speak to the nurse specialist at your hospital (if one has been allocated to you) about your results and ask for a clearer explanation of why it changed from such a low risk cancer to a higher risk?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Hi Paul, sorry to hear you have this problem, anyway you have come to the right place for advice.
It’s unfortunate that you had a TRUS biopsy before your MRI scan, necessitating a second, target biopsy. The MRI should come first.
It will be helpful if you can give us your full Gleason score i.e. X+Y=Z, two numbers then a total. Also the full staging i.e. T3?N?M?
Incontinence can be a consequence of both surgery and radiotherapy. I had surgery and I am completely continent nine weeks later.
Best of luck.
Cheers, John
Edited by member 08 Aug 2018 at 12:40
| Reason: Not specified
User
Well the best advice should come from your medical team but this is a great place to get good questions to ask them!!
Hormone therapy and External beam RT sound a bit extreme for a g3+3 T2 BUT as Bolinge says you need to post your full staging.
Bracy or Prostatectomy would be preferable at your tender age IF your staging will allow it.
User
He has already said that he has been moved up to T3 and it seems that his diagnosis has been given in the new format of group 3 rather than a Gleason score.
Paul, it is very unusual to have only 5% of one core cancerous and for that core to have escaped the capsule but if that is where you are then that's where you are. The T3 will make you unsuitable for active surveillance or brachytherapy which leaves you with the most common options of surgery and radiotherapy.
When the surgeon discussed incontinence with you, did s/he suggest that it would be more likely in your case, or was it just the standard warning that short term or permanent incontinence is a possible side effect? It may be that the area where your cancer has broken the capsule is particularly near to the bladder and that will affect things? Or it could simply have been the warning that everyone gets just in case, in which case you need to know that the vast majority of men regain continence within weeks or months of the op.
It does no harm to go along and meet the oncologist to discuss RT. There are important questions you would need to ask like 'would I have hormones as well' and 'if so, how long for'? Also, would they be targeting the RT at anything other than the prostate, such as lymph nodes or the area where the T3 is?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Try adding a comma and read it again.
I think he was told it was a low grade G3+3 T2 but now the consultant has upgraded it to a new group 3 T3?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Just ring one of the nurses on the number above Paul 0800 074 8383 and they should be able to point you in the right direction
or go to "PROSTATE INFORMATION" in the top bar then "OUR PUBLICATIONS" and the Toolkit is in there
Edited by member 09 Aug 2018 at 19:27
| Reason: Not specified
We can't control the winds - but we can adjust our sails |
User
Hi Paul
I was the same age as you when I had the RP in June last year. I must admit for the first couple of weeks I too had aches and pains but these wear off as your body starts to heal. Now you are on the road to recovery and fingers crossed the dreaded C has been removed. Its always a worry waiting for your blood tests to confirm things have gone well, try not to worry and here's to a speedy recovery.
User
Hope you are soon feeling better Paul
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
I hope things settle down quickly Paul.
Ian
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User
Hi Paul, sorry to hear you have this problem, anyway you have come to the right place for advice.
It’s unfortunate that you had a TRUS biopsy before your MRI scan, necessitating a second, target biopsy. The MRI should come first.
It will be helpful if you can give us your full Gleason score i.e. X+Y=Z, two numbers then a total. Also the full staging i.e. T3?N?M?
Incontinence can be a consequence of both surgery and radiotherapy. I had surgery and I am completely continent nine weeks later.
Best of luck.
Cheers, John
Edited by member 08 Aug 2018 at 12:40
| Reason: Not specified
User
Well the best advice should come from your medical team but this is a great place to get good questions to ask them!!
Hormone therapy and External beam RT sound a bit extreme for a g3+3 T2 BUT as Bolinge says you need to post your full staging.
Bracy or Prostatectomy would be preferable at your tender age IF your staging will allow it.
User
He has already said that he has been moved up to T3 and it seems that his diagnosis has been given in the new format of group 3 rather than a Gleason score.
Paul, it is very unusual to have only 5% of one core cancerous and for that core to have escaped the capsule but if that is where you are then that's where you are. The T3 will make you unsuitable for active surveillance or brachytherapy which leaves you with the most common options of surgery and radiotherapy.
When the surgeon discussed incontinence with you, did s/he suggest that it would be more likely in your case, or was it just the standard warning that short term or permanent incontinence is a possible side effect? It may be that the area where your cancer has broken the capsule is particularly near to the bladder and that will affect things? Or it could simply have been the warning that everyone gets just in case, in which case you need to know that the vast majority of men regain continence within weeks or months of the op.
It does no harm to go along and meet the oncologist to discuss RT. There are important questions you would need to ask like 'would I have hormones as well' and 'if so, how long for'? Also, would they be targeting the RT at anything other than the prostate, such as lymph nodes or the area where the T3 is?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
The statement low grade gleason 3 new grade 3 are mutually exclusive. Also seems to be some confusion in the statement about staging ie everything CAN'T be a three so something is wrong.
Maybe that should be your first question to the oncology team!!
User
Try adding a comma and read it again.
I think he was told it was a low grade G3+3 T2 but now the consultant has upgraded it to a new group 3 T3?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Thanks for all your comments , that is the information i was given new group 3 T3 ,the surgeon told me i could have incontinence for three months and Possibility of longer so just the standard warning then,thanks for clearing that up LynEyre .the surgeon told me it was not in the lymph nodes .As i said i have started taking hormones,then injections then RT,but not so sure now
Edited by member 08 Aug 2018 at 19:17
| Reason: Not specified
User
So the hormones that you have started taking are probably tablets that disguise the testosterone in your body so that the cancer can't find it. When you start on the injections, these stop your body from producing testosterone and the tablets will probably stop. Some oncos like their patients to take the HT for 6 months before they start RT, this is because starved cancer cells are weakened which improves the effectiveness of the RT. More often, the HT is only for 3 months before the RT starts. Did the specalist say how long you would be taking HT after the RT? Some say 6 months, others insist on 2 or 3 years. I would think that this kind of detail will help you to decide whether RT / HT is the right choice for you. Just because you have started taking the tablets doesn't mean it is too late to choose surgery.
If the specialists say that in your case, either treatment will be equally effective then it all comes down to personal preference and approach to risk. For surgery, we have men here who were dry as soon as the catheter was taken out, and others who have been left permanently incontinent. There are members who got an erection within days or weeks of the p and others who will never have an erection again. With RT, there are men who breeze through it and men who are left with bowel or bladder problems. Most but not all side effects of HT are temporary.
You can download the toolkit from this charity or order a hard copy over the phone - it includes a list of potential side effects for each treatment and a list so that you can work through which side effects are more or less tolerable to you. People make different decisions; some would be put off by the side effects of 3 years of hormones but would be happy if it is only for 9 months, for example. Some strongly want the prostate out and on a petrie dish so that a full pathology can be done, while others are more worried about the risk of ED and incontinence.
If you call the nurses on the number at the top of the page, they may be able to put you in touch with other men that have made these choices and can talk through with you. Or maybe ask to speak to the nurse specialist at your hospital (if one has been allocated to you) about your results and ask for a clearer explanation of why it changed from such a low risk cancer to a higher risk?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Thanks again for all your input and advice ,after talking to people in a similar situation and nurses i have decided to go for the operation and they will book me in asap . I now know that is the right choice for me and it feels like a weight has been lifted off my shoulders ,whatever happens after i will move forward with it ,Can not thank the people on here enough as you all have given me all the information that i needed to make a informed decision
User
sorry how do i get the tool kit
User
Just ring one of the nurses on the number above Paul 0800 074 8383 and they should be able to point you in the right direction
or go to "PROSTATE INFORMATION" in the top bar then "OUR PUBLICATIONS" and the Toolkit is in there
Edited by member 09 Aug 2018 at 19:27
| Reason: Not specified
We can't control the winds - but we can adjust our sails |
User
So had my pre op today and all booked in for the 29th of August ,so ive just got to keep pushing forwards ,Thanks again for all the information
User
So i had my operation on the 29/08/18 ,in for two days all went well so i am told , fitted with a catheter for three weeks injections and tablets daily,and of course loads of pain killers .just glad to be home .Now just the wait to see if they got it all and all the tests to come ,i just seem to ache all over don't know if its the same for everyone else.
User
Hi Paul
I was the same age as you when I had the RP in June last year. I must admit for the first couple of weeks I too had aches and pains but these wear off as your body starts to heal. Now you are on the road to recovery and fingers crossed the dreaded C has been removed. Its always a worry waiting for your blood tests to confirm things have gone well, try not to worry and here's to a speedy recovery.
User
Hope you are soon feeling better Paul
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
I hope things settle down quickly Paul.
Ian
|