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Just diagnosed and need to decide treatment

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User
Posted 11 Feb 2022 at 17:36

Husband just been told high grade T2 Gleason 9 (5+4) . Now need to have hormone therapy for 6 weeks but decide to go for  radiotherapy or prostatectomy. He is 69 and fit and healthy and PSA was 4.8. Bone scan was clear.Anyone out there in our has been in a similar situation?

User
Posted 11 Feb 2022 at 23:25

If it is G9 and they are not planning on saving the nerves, there must be a suspicion that the cancer is close to or already breaking out of the gland. Have the surgeon and oncologist both provided you with the data on how likely each treatment is to be successful? Hard for you to make a decision without all the data. For example, if the surgeon says that there is a good chance that the op won't get it all and your man will need salvage radiotherapy anyway, you might wonder what the benefit is of having the op at all. Or you might be happy going into surgery knowing that there is a chance it won't work but hoping that removing the bulk of the cancer and mopping up with RT will be effective. Also, non nerve sparing increases the risk of long term incontinence.


Based on my husband's stats, the surgeon gave a 55% chance of the surgery being successful but we didn't understand the significance of that at the time and went ahead with it. It was very upsetting when the cancer came back and he needed radiotherapy anyway - double side effects :-(


I suppose I am just saying ask enough questions to really understand the choice you are making; for example, have they explained the potential side effects of having a number of lymph nodes removed? With a G9 and concern about the lymph nodes has the oncologist talked to you about the possibility of whole pelvis RT with brachytherapy boost?

Edited by member 11 Feb 2022 at 23:26  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 12 Feb 2022 at 13:57

Originally Posted by: Online Community Member
Given that the need for salvage RT seems highly likely in your situation, I do wonder why you're opting for RP? If you have an RP followed by RT you'll get both sets of side-effects. Why not just go for RT in the first place?

Best wishes,

Chris


I suppose one argument for having RP first could be all subsequent RT could be entirely directed at other areas thought affected, although this might still include the Prostate Bed.  Also, a patient may reason that he wants the mothership out of the frame. As it happened, the RT I had did a good job of eradicating my cancer within and outside the Prostate.  However, still having a Prostate enabled a tumour to regrow in it.  Had I had the RP first, and then RT, I would have avoided subsequent HIFU (twice) to eradicate it in the Prostate and ongoing concern that it could regrow in the Prostate again which is presently my situation.   

Edited by member 12 Feb 2022 at 17:25  | Reason: clarification

Barry
User
Posted 12 Feb 2022 at 20:49

Plus we don't know that the surgeon has said adjuvant or salvage RT is likely to be needed. I was just suggesting that it would be a good idea to ask.

Edited by member 12 Feb 2022 at 23:01  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 14 Feb 2022 at 17:31
Not much consolation but men aren't usually given HT while waiting to decide which treatment to go for so a few days' delay in getting the tablets won't make a difference. Although being told you have cancer can be terrifying, the idea that it is going to spread around your body in a few days or weeks is not the reality.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Posted 11 Feb 2022 at 18:39
Did they say whether the surgery would be nerve sparing or non nerve sparing?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 11 Feb 2022 at 19:48
Thanks for response....They didn't say....what is the difference?
User
Posted 11 Feb 2022 at 20:17

Originally Posted by: Online Community Member
Thanks for response....They didn't say....what is the difference?


There are what may be taken as nerve bundles on either side of the Prostate.  Sometimes a surgeon can remove the Prostate and all cancer with it whilst keeping one or both nerve bundles.  This improves the chances over time of restoring full sexual function.  However, if both bundles have to be removed, it is most likely that a man will suffer ED.  In this latter situation, one of the advantages of Prostatectomy over RT is lost.

Barry
User
Posted 11 Feb 2022 at 20:32
From his conversation, would be non nerve sparing. We are both veering towards prostatectomy and lymph node removal to,hopefully reduce risk of recurrence
User
Posted 11 Feb 2022 at 23:25

If it is G9 and they are not planning on saving the nerves, there must be a suspicion that the cancer is close to or already breaking out of the gland. Have the surgeon and oncologist both provided you with the data on how likely each treatment is to be successful? Hard for you to make a decision without all the data. For example, if the surgeon says that there is a good chance that the op won't get it all and your man will need salvage radiotherapy anyway, you might wonder what the benefit is of having the op at all. Or you might be happy going into surgery knowing that there is a chance it won't work but hoping that removing the bulk of the cancer and mopping up with RT will be effective. Also, non nerve sparing increases the risk of long term incontinence.


Based on my husband's stats, the surgeon gave a 55% chance of the surgery being successful but we didn't understand the significance of that at the time and went ahead with it. It was very upsetting when the cancer came back and he needed radiotherapy anyway - double side effects :-(


I suppose I am just saying ask enough questions to really understand the choice you are making; for example, have they explained the potential side effects of having a number of lymph nodes removed? With a G9 and concern about the lymph nodes has the oncologist talked to you about the possibility of whole pelvis RT with brachytherapy boost?

Edited by member 11 Feb 2022 at 23:26  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 12 Feb 2022 at 09:08
Given that the need for salvage RT seems highly likely in your situation, I do wonder why you're opting for RP? If you have an RP followed by RT you'll get both sets of side-effects. Why not just go for RT in the first place?

Best wishes,

Chris
User
Posted 12 Feb 2022 at 13:57

Originally Posted by: Online Community Member
Given that the need for salvage RT seems highly likely in your situation, I do wonder why you're opting for RP? If you have an RP followed by RT you'll get both sets of side-effects. Why not just go for RT in the first place?

Best wishes,

Chris


I suppose one argument for having RP first could be all subsequent RT could be entirely directed at other areas thought affected, although this might still include the Prostate Bed.  Also, a patient may reason that he wants the mothership out of the frame. As it happened, the RT I had did a good job of eradicating my cancer within and outside the Prostate.  However, still having a Prostate enabled a tumour to regrow in it.  Had I had the RP first, and then RT, I would have avoided subsequent HIFU (twice) to eradicate it in the Prostate and ongoing concern that it could regrow in the Prostate again which is presently my situation.   

Edited by member 12 Feb 2022 at 17:25  | Reason: clarification

Barry
User
Posted 12 Feb 2022 at 20:49

Plus we don't know that the surgeon has said adjuvant or salvage RT is likely to be needed. I was just suggesting that it would be a good idea to ask.

Edited by member 12 Feb 2022 at 23:01  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 12 Feb 2022 at 22:05

I have to say I find the scores confusing. I've also just been diagnosed. My PSA was 39 which I was initially told was High then told scores can be over a thousand. My G score is 3+4 =7 which I've been told is group 2 yet my biopsy showed that there were cancerous cells in all 32 samples = 100% The bone scan and MIR appears to show it hasn't spread now I've just had a PET scan awaiting results. I'm not sure if this makes high grade given my PDA is over 20 but I'm in group 2!

Edited by member 12 Feb 2022 at 22:06  | Reason: Not specified

User
Posted 13 Feb 2022 at 01:52
Hi Les,

I suggest you copy and paste your post into a new thread of your own and delete it here for two reasons. (There will be a delay in it appearing as any new thread goes to the Moderators for approval). Firstly, it is unfair to the OP of a thread to introduce your own situation unless what you post is material to the subject of the thread in some way, as it can side track it. Secondly, you and members will find if helpful to have your details in your your own thread and put the diagnosis and salient points under your Profile/Bio as an easy point of reference for you and members. You will then find members here will respond and help you with some of the complexities of PCa and help you with any questions and provide support.
Barry
User
Posted 14 Feb 2022 at 16:38

Unfortunately,haven't seen the oncologist yet....does anyone else feel like the fates are against them? Saw the urologist on Friday to get the high grade,Gleason 9 score....he gave a script for HT to start ...handed that in to GP who have only just written the script and sent it to chemist who won't have it in stock into tomorrow. Meanwhile given the weekend to decide which treatment to go for and rang specialist nurse co ordinator this morning to get her to arrange meeting with oncologist and surgeon....message left for her to call us but here we are with no call back. Very upset at the moment and need some support. 

User
Posted 14 Feb 2022 at 17:31
Not much consolation but men aren't usually given HT while waiting to decide which treatment to go for so a few days' delay in getting the tablets won't make a difference. Although being told you have cancer can be terrifying, the idea that it is going to spread around your body in a few days or weeks is not the reality.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
 
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