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User
Posted 26 Mar 2018 at 16:11

If I take the worst by now I have possible a locally advanced prostate cancer T3a N0 M0 Gleason 8 (4/4) psa 12.7 diagnosed in 15/02/2018.


After seeing 3 doctors and a radiotherapy specialist, as well as discussion with a cousin who is doctor, I decided for surgery, which is scheduled for 05/04/2018 with likely RT treatment after it.


I moved ahead doing with what I needed to do, I gues. I do not look forward to starting treatment, but had in mind I couldn't waste any time. However I am so afraid of the consequences of surgery and the follow up of PSA after initial treatment. Fear for so many uncertain times ahead.


Happy to receive any feedback or question and particularly your view of how one can cope better with the uncertainty ahead.

User
Posted 27 Mar 2018 at 12:56

No -still doesn't work - try this


https://radiationtherapynews.com/2015/03/27/when-should-prostate-cancer-patients-receive-adjuvant-radiation-therapy/


 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 26 Mar 2018 at 17:09
Hi Paulo, you are right that with a Gleason 8 a decision had to be made and you’ve done that so that’s a good first step.
I found that once I had decided on my treatment I became focused on the operation and getting rid of my cancer.
At first you will be concentrating on recovery but then will come the pathology report post surgery and follow up PSA tests.
The stress of waiting on these results is difficult and I find I worry before and after the PSA test. Once the results are in and they are ok I.e. undetectable I settle for a time until the next tes is coming due.
Unfortunately for me the surgery did not cure me. See my profile for more information.
I found being told the cancer had returned really difficult to accept and deal with but again you start to focus on treatment again and dealing with the issue.
None of this is easy but in your case you seem to think you are a T3a, N0, M0 so you may have to have further treatment.
The big question for you will be adjuvant versus salvage radiotherapy. You will be guided by the pathology of your Prostate, surgical margins and the views/advice of your medical team.
You may find after surgery that all s good, all the above is for the future.
The key thing is that you have made your decision, Stck with it and deal with what follows as best you can.
I wish you every success for your surgery in April.
Ian

Ido4

User
Posted 26 Mar 2018 at 17:17
Paula

I was in a similar position just over a year ago. I had surgery in December 2016. I'm starting my salvage radiotherapy in three weeks and I'm also on a six month course of hormone therapy. Agreed, it hasn't been easy at times but this forum has taught me so much and helped me to make good, well-informed choices. Best of luck.

Ulsterman
User
Posted 26 Mar 2018 at 18:57

Hi Paulo - just a bit of confusion - it seems from your post that you have already agreed to have surgery with adjuvant RT so the salvage RT thing is not relevant to you.

How to prepare? Go shopping! The following might be useful:-

- a bucket to stand your night bag in
- a waterproof sheet or waterproof pads for when the catheter comes out
- pants (not boxers) one size larger than usual - your penis and testicles may be very swollen and will need support
- tracksuit bottoms / joggers in a dark colour with a drawstring or elastic waist - M&S do some in sweatshirt material which are easy to wash and tumble-dryable (a bonus)

Ask whether your hospital provides incontinence pads when the catheter is removed; if not, Tena for Men seem to be the most comfortable brand and are often on 'buy one, get one free' at the big supermarkets.

You could also ask whether they will provide you with a local anaesthetic gel for the eye of your penis while the catheter is in. If not, you can purchase a gel from your local chemist.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 26 Mar 2018 at 19:42

Hello Paulo
I had a similar diagnosis, t3a, but with gleeson 7. I had robotic radical prostatectomy 14 months ago. Before the op I was told follow up (adjuvant) RT may be necessary. The Path Lab report showed extracapsular extension and microscopic negative margins. Follow up PSA has remained undetectable (next one on April 5th) so no RT so far. So I think it just depends on what they find whether or not you have adjuvant RT or not, that and your first post op PSA at about 7 weeks. After that a raised PSA would be a recurrence and RT would then be referred to as salvage.
Sorry if this post is a repeat. I already posted about an hour ago but nothing has appeared.
Good luck
Cheers
Bill

User
Posted 26 Mar 2018 at 20:20

Salvage RT is given when a man has had surgery and yet the cancer comes back at some point in the future

Adjuvant RT is either planned to be given straight after surgery (as in your case) or it becomes clear immediately after the op that RT is going to be needed.

So they are the same treatment given the same way - the difference is whether it is soon after surgery or months / years later.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 26 Mar 2018 at 22:58
Hi Paulo, if you have a plan for radiotherapy soon after surgery that would be adjuvant treatment.
If you waited to see if PSA rises at some point later then that would be salvage radiotherapy. As Lyn has said there is no difference in the actual treatment just in the timing of when it happens.
If a man has high risk disease where there is a chance that microscopic cancer cells can be left behind after surgery adjuvant radiotherapy has been shown to improve outcomes.
Best wishes, Ian

Ido4

User
Posted 26 Mar 2018 at 23:21

You are quite right Ian, and it is an important set of data. A small number of the main uro-oncology centres have been trialling an offer of adjuvant RT for all men taking the surgical route and the early outcomes indicate far lower recurrence rates. Our Mr B, who has been part of the trial, reckons that in the future it could be seen as the best way to treat PCa.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 27 Mar 2018 at 06:49
Back to your original questions:

Coping after surgery - The intial period is a bit pants there is no denying it BUT whatever happens post surgery don't try and "tough it out" if you have any concerns or issues make a noise about them and get them sorted! It's very easy to suffer in silence only to find out later your issues could have been dealt with if only you had said something!

So if ED, leakage etc concerns you make sure you get the relevant post op support as early as possible - This is even more important if you are having early adjuvant RT.

Coping with the stress of follow up - This one is really tricky just getting a call from the ONC or URO'S secretary will set my heart racing! This site and others like it are great but you can literally find every bad news story you want as well as good news so you need to be careful. Most important whatever happens you must focus on what works for you.

BTW If it helps I think surgery + adjuvant RT is your best option for a long term remission.

All the best
User
Posted 27 Mar 2018 at 12:18
I wish someone had explained this to my urologist. He described my situation as high risk but advised against adjuvant radiotherapy because it would stop my functional recovery in its tracks. Because of that advice by the time I reached salvage radiotherapy the oncologist thinks I already have micrometastasis.
So Paulo if you are deemed as high risk adjuvant radiotherapy seems eminently sensible.
See article below
Adjuvant radiotherapy for Prostate cancer

Ido4

User
Posted 27 Mar 2018 at 13:37
Thanks Lyn.

Ido4

User
Posted 27 Mar 2018 at 15:27

As I said above I was told Adjuvant RT may be advised post Op. After my first PSA tests were undetectable I suggested RT just to be sure, but was told by my Uro. that they won't offer it unless they are sure it is necassery due to the chance of adverse side effects. At the time I was worried that I should be having it and even wanted it. I already had IBS and Piles etc... pre Op and now I am only just recovering from ED 14 months down the road. So with undetectable PSA so far and now like Paulo I have learned more about Pca treatments and their side effects, I am glad I didn't have the RT and dread a recurrence which will mean I need it.

Thanks again to all on this site who share their experiences and knowledge.

Cheers

Bill

Show Most Thanked Posts
User
Posted 26 Mar 2018 at 17:09
Hi Paulo, you are right that with a Gleason 8 a decision had to be made and you’ve done that so that’s a good first step.
I found that once I had decided on my treatment I became focused on the operation and getting rid of my cancer.
At first you will be concentrating on recovery but then will come the pathology report post surgery and follow up PSA tests.
The stress of waiting on these results is difficult and I find I worry before and after the PSA test. Once the results are in and they are ok I.e. undetectable I settle for a time until the next tes is coming due.
Unfortunately for me the surgery did not cure me. See my profile for more information.
I found being told the cancer had returned really difficult to accept and deal with but again you start to focus on treatment again and dealing with the issue.
None of this is easy but in your case you seem to think you are a T3a, N0, M0 so you may have to have further treatment.
The big question for you will be adjuvant versus salvage radiotherapy. You will be guided by the pathology of your Prostate, surgical margins and the views/advice of your medical team.
You may find after surgery that all s good, all the above is for the future.
The key thing is that you have made your decision, Stck with it and deal with what follows as best you can.
I wish you every success for your surgery in April.
Ian

Ido4

User
Posted 26 Mar 2018 at 17:17
Paula

I was in a similar position just over a year ago. I had surgery in December 2016. I'm starting my salvage radiotherapy in three weeks and I'm also on a six month course of hormone therapy. Agreed, it hasn't been easy at times but this forum has taught me so much and helped me to make good, well-informed choices. Best of luck.

Ulsterman
User
Posted 26 Mar 2018 at 18:47

Thanks Ian for feedback and wishes.
What do you mean on the point you made about adjuvant versus salvage radiotherapy?
If there is anything left after surgery isn't adjuvant treatment of radiotherapy supposed to kill what is the rest of it?
I read you profile and hope all the best to you too.

User
Posted 26 Mar 2018 at 18:57

Hi Paulo - just a bit of confusion - it seems from your post that you have already agreed to have surgery with adjuvant RT so the salvage RT thing is not relevant to you.

How to prepare? Go shopping! The following might be useful:-

- a bucket to stand your night bag in
- a waterproof sheet or waterproof pads for when the catheter comes out
- pants (not boxers) one size larger than usual - your penis and testicles may be very swollen and will need support
- tracksuit bottoms / joggers in a dark colour with a drawstring or elastic waist - M&S do some in sweatshirt material which are easy to wash and tumble-dryable (a bonus)

Ask whether your hospital provides incontinence pads when the catheter is removed; if not, Tena for Men seem to be the most comfortable brand and are often on 'buy one, get one free' at the big supermarkets.

You could also ask whether they will provide you with a local anaesthetic gel for the eye of your penis while the catheter is in. If not, you can purchase a gel from your local chemist.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 26 Mar 2018 at 19:05

Thanks Lyn for the shopping tips :-)

Sorry to insist with same question I placed to Ian. I mean, I said after surgery there can be radiotherapy, because this is what the doctor is saying I might need. What is salvage RT then? Is this the alterantive to surgery if I hadn't decided for surgery?

User
Posted 26 Mar 2018 at 19:12

Read your profile too Ulstermann. You had this thing even younger than me and still in an early stage of treatment. Best of luck to you too.

User
Posted 26 Mar 2018 at 19:42

Hello Paulo
I had a similar diagnosis, t3a, but with gleeson 7. I had robotic radical prostatectomy 14 months ago. Before the op I was told follow up (adjuvant) RT may be necessary. The Path Lab report showed extracapsular extension and microscopic negative margins. Follow up PSA has remained undetectable (next one on April 5th) so no RT so far. So I think it just depends on what they find whether or not you have adjuvant RT or not, that and your first post op PSA at about 7 weeks. After that a raised PSA would be a recurrence and RT would then be referred to as salvage.
Sorry if this post is a repeat. I already posted about an hour ago but nothing has appeared.
Good luck
Cheers
Bill

User
Posted 26 Mar 2018 at 20:20

Salvage RT is given when a man has had surgery and yet the cancer comes back at some point in the future

Adjuvant RT is either planned to be given straight after surgery (as in your case) or it becomes clear immediately after the op that RT is going to be needed.

So they are the same treatment given the same way - the difference is whether it is soon after surgery or months / years later.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 26 Mar 2018 at 20:45

Thanks Bill and good luck to you too.

User
Posted 26 Mar 2018 at 22:58
Hi Paulo, if you have a plan for radiotherapy soon after surgery that would be adjuvant treatment.
If you waited to see if PSA rises at some point later then that would be salvage radiotherapy. As Lyn has said there is no difference in the actual treatment just in the timing of when it happens.
If a man has high risk disease where there is a chance that microscopic cancer cells can be left behind after surgery adjuvant radiotherapy has been shown to improve outcomes.
Best wishes, Ian

Ido4

User
Posted 26 Mar 2018 at 23:21

You are quite right Ian, and it is an important set of data. A small number of the main uro-oncology centres have been trialling an offer of adjuvant RT for all men taking the surgical route and the early outcomes indicate far lower recurrence rates. Our Mr B, who has been part of the trial, reckons that in the future it could be seen as the best way to treat PCa.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 27 Mar 2018 at 06:49
Back to your original questions:

Coping after surgery - The intial period is a bit pants there is no denying it BUT whatever happens post surgery don't try and "tough it out" if you have any concerns or issues make a noise about them and get them sorted! It's very easy to suffer in silence only to find out later your issues could have been dealt with if only you had said something!

So if ED, leakage etc concerns you make sure you get the relevant post op support as early as possible - This is even more important if you are having early adjuvant RT.

Coping with the stress of follow up - This one is really tricky just getting a call from the ONC or URO'S secretary will set my heart racing! This site and others like it are great but you can literally find every bad news story you want as well as good news so you need to be careful. Most important whatever happens you must focus on what works for you.

BTW If it helps I think surgery + adjuvant RT is your best option for a long term remission.

All the best
User
Posted 27 Mar 2018 at 12:18
I wish someone had explained this to my urologist. He described my situation as high risk but advised against adjuvant radiotherapy because it would stop my functional recovery in its tracks. Because of that advice by the time I reached salvage radiotherapy the oncologist thinks I already have micrometastasis.
So Paulo if you are deemed as high risk adjuvant radiotherapy seems eminently sensible.
See article below
Adjuvant radiotherapy for Prostate cancer

Ido4

User
Posted 27 Mar 2018 at 12:19
Not sure that link was working.
Second attempt!
Adjuvant radiotherapy

Ido4

User
Posted 27 Mar 2018 at 12:56

No -still doesn't work - try this


https://radiationtherapynews.com/2015/03/27/when-should-prostate-cancer-patients-receive-adjuvant-radiation-therapy/


 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 27 Mar 2018 at 13:37
Thanks Lyn.

Ido4

User
Posted 27 Mar 2018 at 14:46

Thanks Ian and Lyn.
You can't imagine how this site is helping me. I am putting aside many doubts and I am learning to speak out and even write about this "thing".

I read through the article and digged into others of similar topics. In many articles it is said that a multidisciplinary treatment approach to high risk patients is better despite the side effects (which is though controversial). Do you happen to know any studies about it? Particully of course about radiotherapy just after Surgery?

User
Posted 27 Mar 2018 at 15:27

As I said above I was told Adjuvant RT may be advised post Op. After my first PSA tests were undetectable I suggested RT just to be sure, but was told by my Uro. that they won't offer it unless they are sure it is necassery due to the chance of adverse side effects. At the time I was worried that I should be having it and even wanted it. I already had IBS and Piles etc... pre Op and now I am only just recovering from ED 14 months down the road. So with undetectable PSA so far and now like Paulo I have learned more about Pca treatments and their side effects, I am glad I didn't have the RT and dread a recurrence which will mean I need it.

Thanks again to all on this site who share their experiences and knowledge.

Cheers

Bill

User
Posted 27 Mar 2018 at 15:42

Bill, maybe a gleason 7 (3+4) in your case is different from a 8 (4+4) in my case. In my case I won't be having most likely nerve sparing...At the time of diagnosis I was told that one of the alternatives for me could be surgery and adjuvant radiotherapy depending of how the whole "thing" result would turn out to be after analysis. I started learning more about the purpose of the treatments and side effects later till now. I believe I will follow the doctor's advise when the time comes, but I am getting mentally prepared for the adjuvant radiotheray treatment as well as I am learning more of it, the desease and other people's experiences.
Thanks to all, Paulo

 
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