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Post operative PSA result

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User
Posted 23 Jan 2017 at 10:23

Good morning everyone

Pleasantly surprised this morning - my first PSA result after prostatectomy is 0.014.

I'm 46, pT3b, Gleason 9,  but not in the lymph nodes. ISUP 5. Capsule + and Margin +. Perineural, lymphovascular and extracapsular perineural spread. Tumour occupied 35% of the gland.

PCUK and my nurse said that adjuvant radiotherapy still likely as a precaution.  I see the oncologist on Wednesday. 

Any advice on what I should be asking?  I'm feeling positive but want to be fully prepared for my meeting as I can be.

Ulsterman

User
Posted 23 Jan 2017 at 19:31

John was in denial and desperately did not want to believe he needed salvage RT - it took 2 years for the PSA to go high enough to convince him. RT was a breeze - he never missed a day of work and carried on playing rugby, going to the gym daily etc - but he did hate the HT and stopped it early.

It seems that 5 years on, the cancer is still lurking so in hindsight, did he make an error waiting 2 years and giving it a chance to get stronger, or was it cutting the HT short? Probably both but we will never know for sure.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 27 Jan 2017 at 16:11

Good afternoon everyone.

I had my meeting with the oncologist on Wednesday.  She said that with my T3b and Gleason 9, there was definitely an argument to proceed with immediate radiotherapy.  However, given that my first post-operative PSA was so low, 0.014, she said she would prefer to get at least one more PSA reading in 3 months.  

Being a cautious soul, delaying radiotherapy concerns me so I bargained her down to 2 months for the PSA test.  She told me that I will need to have radiotherapy at some stage.

So, if I start radiotherapy say in May, it will be radiotherapy alone.  She said she wants to leave hormone therapy until a later date.  Does anyone have any thoughts on that?  I just assumed I'd have both together.

In any case, I'm glad to be treatment free for a few months at least.  My trip to Cuba looks like it is going to happen at Easter.

Ulsterman

User
Posted 27 Jan 2017 at 22:01
Chris

I'm N0. She feels I would benefit from adjuvant radiotherapy but does want the second PSA result.

I think you're right - I am a 'for living' person. But if side effects of further treatments become unbearable, I think I'd elect to let nature take its course.

I think they still think there is an outside chance of a cure. Realistically speaking, I'm not convinced. In my mind, I have a life-limiting disease. And that's not me being negative, it just seems right to think that based on my scores and grades.

Walter

User
Posted 28 Jan 2017 at 00:24

I don't think that is a negative outlook at all, just realistic (in my opinion) but the 'limited' life could be 10, 20 or more years of near-normality by playing the cards well. Dad had the (at that point still experimental) nerve sparing RP when he was 62 and although he has recurrence and is currently refusing salvage RT or HT we are about to celebrate his 80th birthday.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 29 Jan 2017 at 09:33

Even I , who has literally tried everything and driven my own recovery , would be very loathe to go down the implant route Walter.
As Lyn commented the injections you will be supplied with can be very hit or miss. I never really had true success but enough to allow penetrative sex. However I suffered awful after pain with them , and it didn't take long before I stopped using them like many men. But try all the forms of Alprostadil -- injection , pellets , cream etc. And ask ask ask if you can try Invicorp25 which has just been the bees knees for date nights. I think you'll get enough success one way or another that you'll think again about an implant. And buy a durex soft ring from the supermarket. Seems to make all the difference to many men. Good luck

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User
Posted 23 Jan 2017 at 11:23

Good result Walter. Best wishes for next stage of journey.

Chris

User
Posted 23 Jan 2017 at 13:49

Brilliant result Walter.

Good luck with the oncologist

We can't control the winds - but we can adjust our sails
User
Posted 23 Jan 2017 at 13:58

Chuffed mate totally. Exactly where we all wanted to be post op. You have plenty of time to think about RT , but as discussed on threads recently , now is probably the best time to have it even if you don't need it!! You have to weigh up life and quality of life and come to your own decision. RP and RT both come with side effects as you well know. Remember as a young man your chances of a different cancer arising in 20 years time as a result of RT are increased , but probably still small ?? I'm certainly no expert , but I desperately wanted sexual function back , and tbh if you don't need RT , then I wouldn't have it. Purely my humble view !!
Happy for you.

User
Posted 23 Jan 2017 at 14:13

Hi Walter

Great news.  Not really much to ask at this stage ? Let it all 'sink in' and keep recovering eh ?..  both physically , mentally and emotionally.  ED might rear it's head (or not ! http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif)  at the meeting, should you want to discuss. 

Quite a journey at a young age and quick.  What made you visit that Lions 'PSA check '  eh ?

At 3 decimal places  0.014 sounds very good also.  Mine was 0.04 at that stage. (ie 6 wks)

Chris input, agree r.e RT .  I decided against (I did discuss a trial, RADICALS ?I think it was called;  however we (wife and I) decided against.  I would give my body a chance and see what the 'scores on the doors' would say going forward. We just didn't dismiss RT post RP, our logic was , as and when / if.

I asked my consultate is it targeted and adjusted to the lesions found on prostate image / position.  He said no.  'just' focused at the prostate bed ?   Seemed a little 'scatter gun' to me (probably literally).    

I was so fortunate to be dry after 2 days and no bowel problems at all, so let things 'be as there were' and take my chances.

 

  

All the very best

Gordon

PS My 21 mth PSA was < 0.01 last week, so now just awaiting my '2yr' review / call up.    http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

     

 

 

 

 

 

Edited by member 23 Jan 2017 at 14:21  | Reason: Not specified

User
Posted 23 Jan 2017 at 15:12

Ulsterman

I had a good post op PSA of .03 but a disappointing histology, positive margins and extraprostatic extension. I was told there was a 30 per cent chance of recurrence, also meaning there was a 70 per cent chance of no recurrence. Three years on I am now heading for salvage RT or not if I decline it. My PSA of 0.03 stayed like that for over a year then started to slowly climb.

In your stats does "margin +" mean positive margins.

As already mentioned at a young age do you risk triggering an additional cancer ? If you have adjuvant treatment now are you being over treated if you do not are you being under treated ?

Thanks Chris

User
Posted 23 Jan 2017 at 18:28

Thanks everyone.  I'm glad I've got you all as you have helped me to clarify what I need to take into consideration when meeting the oncologist this week - and if anyone has anything to add or suggest, please feel free to write.

Colwick Chris - margin+ does indeed mean positive margins.

I'll let you know what the oncologist suggests.

Walter

User
Posted 23 Jan 2017 at 19:06

well done,i am t3b with seminal vessicle invasion gleason 7 and was not offered surgery,i have read elsewhere that people with locally advanced have had surgery,how come some are offered surgery and some arent ,strange.

User
Posted 23 Jan 2017 at 19:19
Hi Walter,

Great news about the PSA result. Seems to going really well. You must be so pleased. Enjoy.

Steve.

User
Posted 23 Jan 2017 at 19:19

Read my profile mate.

I'm of a different opinion as I think if it's broken out of the capsule why give it chance to spread. You may decide to see what the PSA does as it is very low. This is what we did but decided to act before it hit 0.1 I totally agreed with this as I didn't want to give it chance to start moving, just hope we caught it in time.

Oh and 3 years on and so far no side effects from RT and worked throughout

Good luck with the consult.

Bri

User
Posted 23 Jan 2017 at 19:31

John was in denial and desperately did not want to believe he needed salvage RT - it took 2 years for the PSA to go high enough to convince him. RT was a breeze - he never missed a day of work and carried on playing rugby, going to the gym daily etc - but he did hate the HT and stopped it early.

It seems that 5 years on, the cancer is still lurking so in hindsight, did he make an error waiting 2 years and giving it a chance to get stronger, or was it cutting the HT short? Probably both but we will never know for sure.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 23 Jan 2017 at 21:10
Folks

I'm inclined to go for RT if the oncologist says it is the best way forward. In truth, I'd prefer it if I didn't have a choice, because I see the pros and cons and I think it's difficult to decide. I'll keep you posted as to what she recommends.

Radar - when they operated, I was T3a and Gleason 7. I was upgraded in the lab. I think that the younger you are, the more radical the treatment.

Walter

User
Posted 24 Jan 2017 at 10:10

ulsterman yeah agree about age,but i have read a lot about people with a worse dx than me offered surgery t3bno mo,i think it must be due to side effects,they say once the horse has left the barn then ht/rt.cheers.

User
Posted 27 Jan 2017 at 16:11

Good afternoon everyone.

I had my meeting with the oncologist on Wednesday.  She said that with my T3b and Gleason 9, there was definitely an argument to proceed with immediate radiotherapy.  However, given that my first post-operative PSA was so low, 0.014, she said she would prefer to get at least one more PSA reading in 3 months.  

Being a cautious soul, delaying radiotherapy concerns me so I bargained her down to 2 months for the PSA test.  She told me that I will need to have radiotherapy at some stage.

So, if I start radiotherapy say in May, it will be radiotherapy alone.  She said she wants to leave hormone therapy until a later date.  Does anyone have any thoughts on that?  I just assumed I'd have both together.

In any case, I'm glad to be treatment free for a few months at least.  My trip to Cuba looks like it is going to happen at Easter.

Ulsterman

User
Posted 27 Jan 2017 at 16:57

Research says that salvage RT is more successful when coupled with HT but I am not sure whether that also applies to adjuvant RT. It is surprising to have RT without HT but not unheard of. Or maybe with your stats she is thinking that full remission is not a certainty and doesn't want you to become castrate resistant too early?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 27 Jan 2017 at 19:29

I thought it was a common practice to have RT without HT when it is adjuvant
Bri

User
Posted 27 Jan 2017 at 19:51

I cant tell from your profile whether you have N1 or not ?? I was offered RT straight after op but I was N1 and told it wouldn't be curative. So I didn't have it. My psa was very high post op at 1.5 quickly rising to 2.4.
But if you are N0 and have an amazing low psa , but she suspects likely spread , then she is throwing adjuvant RT at you essentially rather than letting it rise and then offering salvage RT. I get the impression from your posts thus far that you are all for living and sod the side-effects. If that is the case I guess going for RT immediately is a good call.

User
Posted 27 Jan 2017 at 22:01
Chris

I'm N0. She feels I would benefit from adjuvant radiotherapy but does want the second PSA result.

I think you're right - I am a 'for living' person. But if side effects of further treatments become unbearable, I think I'd elect to let nature take its course.

I think they still think there is an outside chance of a cure. Realistically speaking, I'm not convinced. In my mind, I have a life-limiting disease. And that's not me being negative, it just seems right to think that based on my scores and grades.

Walter

User
Posted 28 Jan 2017 at 00:24

I don't think that is a negative outlook at all, just realistic (in my opinion) but the 'limited' life could be 10, 20 or more years of near-normality by playing the cards well. Dad had the (at that point still experimental) nerve sparing RP when he was 62 and although he has recurrence and is currently refusing salvage RT or HT we are about to celebrate his 80th birthday.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Jan 2017 at 00:59
Lyn - I agree with you. I am aiming for the upper limits of 'life limited'. I'm going nowhere yet! Your dad's situation is an encouragement. Thank you.

Walter

User
Posted 28 Jan 2017 at 07:37

I don't know if you have read my profile. It's quite up to date I didn't want treatment at all at the start of my journey but ended up being press ganged into it. My results are pretty awful and something relentless is growing inside me. I was obsessed with maintaining a normal love life and after what I was left with post op there was NO way RT was coming anywhere near me especially when told it was non curative. I may still do it at some point. Pain is a great persuader.
Maybe I got you wrong. So technically you are in a great position post op and believe me it can be an enormous struggle and well over a year but you might get great ED recovery like I have. Why not in that case just watch the psa a while. Hopefully it will be years before you need RT if at all. But it will be salvage then and a huge percentage of people who have salvage RT fail again later on. I've got without doubt treatment starting again in one form or another , but I'm very QOL rather than quantity , but that's just me and my outlook. I don't " love life " very much and never have , and to be frank this disease and the treatment and the side-effects along with the endless mental pain have made it worse.
Go with your heart mate !

User
Posted 28 Jan 2017 at 22:51
Chris

I've read your profile and lots of your posts and have learnt a lot from you.

I had non nerve sparing. I'm being injected on Wednesday by my urologist. Do the injections always work? And do they work if you have radiotherapy?

The urologist is considering me for a penile implant. I'm not too sure as it's an irreversible procedure.

Apart from that, am I better to proceed now with adjuvant or to wait for salvage? Only a crystal ball could tell me that. Most times, I'm a cautious but proactive person who takes control of a situation. With this one, it's really, really hard to know what to do. Part of me wants to wait and see just in case it never comes back, but I think that a tad unrealistic.

Sorry you've had such a torrid time.

W

User
Posted 28 Jan 2017 at 23:39

The injections don't work for everyone. For some, they work but not consistently while others find them to be fantastic every time. Radiotherapy makes no difference to the efficacy of the injections or pellets.

John waited - it took 2 years to convince him that the op hadn't nailed it. It meant that he had a decent break to fully recover before starting again but since the PSA seems to be creeping again it may be that the 2 years was an opportunity for any rogue cells to embed.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Jan 2017 at 23:43

PS don't be rushed down the penile implant route too quickly - you could go through all that surgery and then if the doctor is right and you end up on hormones sooner or later, the implant will be redundant.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Jan 2017 at 23:55
Age is an issue with the implant - if I wait until three years of hormone therapy are over, they'll probably tell me I'm too old!!!
User
Posted 29 Jan 2017 at 09:33

Even I , who has literally tried everything and driven my own recovery , would be very loathe to go down the implant route Walter.
As Lyn commented the injections you will be supplied with can be very hit or miss. I never really had true success but enough to allow penetrative sex. However I suffered awful after pain with them , and it didn't take long before I stopped using them like many men. But try all the forms of Alprostadil -- injection , pellets , cream etc. And ask ask ask if you can try Invicorp25 which has just been the bees knees for date nights. I think you'll get enough success one way or another that you'll think again about an implant. And buy a durex soft ring from the supermarket. Seems to make all the difference to many men. Good luck

User
Posted 29 Jan 2017 at 09:50
Thanks Chris.
User
Posted 29 Jan 2017 at 12:18

Dad used caverject for years and never had any problems - however, he needed a very high dose and so has always been on the single chamber rather than double chamber version.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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