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Latest PSA result ....decision time?

User
Posted 10 Feb 2018 at 22:13
Hi everyone, just got latest PSA result Friday, third result over nine months and upward trend. Has gone from 2.92, 3.5 and now 4.12. Already on active surveillance for localised PCa Gleason 6 , almost 2 years now. Wondering is it time to rethink current strategy or just continue on AS? MRI due in March so maybe this will make decision easier? Have read some people at my stage looking at Brachytherapy as an option, just worried upward trend in PSA is indicating a change in the current status.

Keithyboy

User
Posted 12 Feb 2018 at 21:46

Hi John, thanks for your reply, have appointment on 19th Feb so will investigate options. You hit the nail on the head when you never know if you have made the right decision. I am 54 years old and would like to think I have some quality years left, and knowing what the best course of action is to enable this to happen is the dilemma everyone in a similar situation finds themselves. I will wait for the advice next week , but feel I should as you say press for more action ,because of the steady rise in PSA levels. I am also continually fatigued because of broken sleep and have got to the stage of having to grab a nap at lunchtime and early evening. I was completing about 20 miles running each week , but tiredness has stopped me doing this , and I would be lucky if I could muster up the strength to complete about 4 miles maximum. Not sure if you or anyone else on the forum has gone through this, it's frustrating as I was able to complete 2 full marathons back in 2016. I will wait for next weeks update and take it from there.
Many thanks again for your words
Best wishes
Keithyboy

User
Posted 13 Feb 2018 at 21:27

Hi John, thanks for your support. I am sure running your own business was a lot to contend with and having to cope with PCa on top of all of that must have been difficult. Retirement and having the time to enjoy travelling would have been a welcome relief. My wife and myself intend to do the same when my retirement comes around. I believe I will be a bit better prepared next week in relation to asking questions and seeking some clarification in terms of my best option going forward. Enjoy the travelling if you are heading off soon , nice to get a bit of vitamin D every now and again.
Cheers
Keithyboy

User
Posted 14 Feb 2018 at 17:17

Originally Posted by: Online Community Member
Hi everyone, just got latest PSA result Friday, third result over nine months and upward trend. Has gone from 2.92, 3.5 and now 4.12. Already on active surveillance for localised PCa Gleason 6 , almost 2 years now. Wondering is it time to rethink current strategy or just continue on AS? MRI due in March so maybe this will make decision easier? Have read some people at my stage looking at Brachytherapy as an option, just worried upward trend in PSA is indicating a change in the current status.
Keithyboy
Interesting perspective from a patient story here "Choosing and sticking with Active Surveillance" https://www.harvardprostateknowledge.org/choosing-and-sticking-with-active-surveillance-a-patients-story

Shut down the voices of doom and spend your time living.
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User
Posted 11 Feb 2018 at 02:52

Hi Keithyboy, Yes, it would seem to make sense to learn what if anything MRI reveals through subsequent discussion with your consultant. However, your PSA increases progressively and even if it is decided that it is too early to have radical treatment for the immediate future, it would be good to decide, if possible, the treatment that you would favour or to put it another way what you would dislike the least providing it is on offer, at an appropriate time. You mention brachytherapy. Had you in mind the high dose version where radioactive probes are inserted during an operation under anesthetic for a time and then withdrawn or the low dose version where seeds are implanted in an operation and left in place? No doubt you will have researched these options as both may be open to you. You may decide like most younger men that you will go with surgery. Depending where the cancer is and it's extent you might instead consider a form of focal therapy where there are several possibilities though these are usually still regarded as experimental because of lack of long term assessment.

I think it would be helpful to you and for others who respond, if you show details of your diagnosis and ongoing progress under your Bio and perhaps keep to one thread for essentially the same thing about your situation. This provides a useful point of reference for members to know where you are and to respond appropriately, rather than have to search through various postings under different threads which can be lost over time .

Edited by member 11 Feb 2018 at 02:55  | Reason: Not specified

Barry
User
Posted 11 Feb 2018 at 17:32

Hi Barry, thanks for the guidance on the site, still trying to find my way around it. Thanks for the advice , I had read about Brachytherapy from a previous post , but not heard of the radioactive probes so thanks for that. not sure what is available in Northern Ireland , but will go well prepared for my visit to my Urologist, which should happen in March. My diagnosis is 3+3=6 Gleason score Stage 1, last biopsy showed 5 positive cores out of 11. As I am 54 you have suggested the possibility of surgery and that is something I have considered. Focal therapy is totally new to me , but will investigate.
Thanks for the information
Many kind wishes
Keithyboy

User
Posted 12 Feb 2018 at 12:19

Hi Keithyboy,

Only you can decide what procedures to have in the end but your prognosis is at the lower end of the Gleason score but if it was me the raise in Psa would make me think of asking more questions to the oncologist to give you a better idea of your options going forward.

If you click my avatar it will show you my progress taking the Brachytherapy route but I could also have had the robotic removal only time will tell if i made the right choice but at 70 i felt it worth the risk and i would have less secondary problems.

I am 17 months on from my operation with PSA 0.44 and doing well.

 

Good luck John. 

Edited by member 12 Feb 2018 at 12:22  | Reason: Not specified

User
Posted 12 Feb 2018 at 21:46

Hi John, thanks for your reply, have appointment on 19th Feb so will investigate options. You hit the nail on the head when you never know if you have made the right decision. I am 54 years old and would like to think I have some quality years left, and knowing what the best course of action is to enable this to happen is the dilemma everyone in a similar situation finds themselves. I will wait for the advice next week , but feel I should as you say press for more action ,because of the steady rise in PSA levels. I am also continually fatigued because of broken sleep and have got to the stage of having to grab a nap at lunchtime and early evening. I was completing about 20 miles running each week , but tiredness has stopped me doing this , and I would be lucky if I could muster up the strength to complete about 4 miles maximum. Not sure if you or anyone else on the forum has gone through this, it's frustrating as I was able to complete 2 full marathons back in 2016. I will wait for next weeks update and take it from there.
Many thanks again for your words
Best wishes
Keithyboy

User
Posted 13 Feb 2018 at 10:39

Hi Keithyboy,

 

20 Miles is good,I have only ever done 20 miles on a bus.I have tiredness and i think fatigue  and wake up at night and think about it and of course feel rubbish in the morning but I was always one for worry even when i had my own Business and done much the same.

What has helped me since retiring in 2011 is being able to get away for long trips in my Motorhome into Europe and doing some long stretches of driving seeing different places and of course some sun.

I of course at 71 am bit older and the life expectancy comes into the plan and of course any of us could be run over by a bus and you stand more of a chance than me with all your road running,

But joking apart I think once you talk to your specialists about your options and a way forward it may feel a bit better i know once i decided which way to go i felt a bit happier,but after the operation the doubts come back as to have i made the right decision.

Good luck and if i can help in any way i will.

 

Regards John.

User
Posted 13 Feb 2018 at 21:27

Hi John, thanks for your support. I am sure running your own business was a lot to contend with and having to cope with PCa on top of all of that must have been difficult. Retirement and having the time to enjoy travelling would have been a welcome relief. My wife and myself intend to do the same when my retirement comes around. I believe I will be a bit better prepared next week in relation to asking questions and seeking some clarification in terms of my best option going forward. Enjoy the travelling if you are heading off soon , nice to get a bit of vitamin D every now and again.
Cheers
Keithyboy

User
Posted 13 Feb 2018 at 21:47
Hi Keithyboy, what treatment are you on that affects your running? I ran 2 marathons last April whilst training for the Comrades ultra on 4th June but was diagnosed 9th May 2017. I got back to running and have since done 2 half’s and am training (crock of shite but I’m still doing it) for London which I’m running for PCUK. Have you read Kevin Webber’s threads (handle is Iran) or seen his website www.makethemostof.it as he has done amazing things running. I understand that we all react differently to treatment but I’m determined to keep running!
User
Posted 13 Feb 2018 at 22:12

Hi tonyc, no treatment yet , but over last few weeks tiredness has overcome my desire to run and my motivation levels are zero. Diagnosed April 2016 and on AS for nearly two years . Gleason 6 ,not sure if it is just worrying about steady rise in PSA levels recently and just the whole situation is starting to affect my enthusiasm for road running. Completed the Great Limerick Run in May last year for PCUK , full 26.2 miles great day out , just over 4 hours , before that I had completed Dublin and Belfast Marathons in same year and numerous half marathons , and that's why this is now so frustrating as my desire has left me. Anyway hoping things will improve next week after visit to Doc. Also heading into spring will also help as weather should improve and need to invest in a new pair of running shoes! I have read Kevin Webber's story and admire his achievements , makes me feel very humble. Great that you are determined to keep running , always a good way to clear the head.
Thanks for your comments
Keithyboy

User
Posted 14 Feb 2018 at 17:17

Originally Posted by: Online Community Member
Hi everyone, just got latest PSA result Friday, third result over nine months and upward trend. Has gone from 2.92, 3.5 and now 4.12. Already on active surveillance for localised PCa Gleason 6 , almost 2 years now. Wondering is it time to rethink current strategy or just continue on AS? MRI due in March so maybe this will make decision easier? Have read some people at my stage looking at Brachytherapy as an option, just worried upward trend in PSA is indicating a change in the current status.
Keithyboy
Interesting perspective from a patient story here "Choosing and sticking with Active Surveillance" https://www.harvardprostateknowledge.org/choosing-and-sticking-with-active-surveillance-a-patients-story

Shut down the voices of doom and spend your time living.
User
Posted 18 Feb 2018 at 21:23

Malcolm, interesting reading , many thanks for the link. A lot to contemplate.
Keithyboy

User
Posted 18 Feb 2018 at 22:44

An excellent read Malcolm. Thank you for sharing

User
Posted 13 Mar 2018 at 23:54
Hi everyone, had further consultation with Urologist this evening , PSA result from last Monday was 3.0 which was down from 4.12 exactly one month ago. After discussions this evening a further MRI scan is planned for May and an assessment made after this. 2 years on AS ,but go through the uncertainty every time it comes to PSA results every three months and as time moves on it concerns that the situation may escalate. According to what I am told a lot of men around my age decide to go for surgery , but this again worries me that it might be a bit of overkill, but it's not knowing how the PCa will develope over the coming years. My father has just had his 6 monthly check up and is now going for CT scan and then a bone scan next week as his PSA has increased quite dramatically over the last few weeks. He is in his seventies ,but has had PCa since his early sixties. I am 54, so I was diagnosed at a much earlier age , and it is this that concerns me that making the right choice now will determine what quality of life I will have for the rest of my years. I have a couple of months to mull over what I should do , and the results of the MRI , which will be my third in two years and any subsequent biopsies after this may make the decision for me. Anyone who is on AS with localised PCa and has any advice on this would be much appreciated. I am told any surgery, if I opted for this, would be carried out in England. I mention this as I live in Northern Ireland.

Keithyboy

User
Posted 14 Mar 2018 at 04:05

I hope you will have a hi-res multi-parametric MRI at 3 Tesla resolution, as this will provide the most accurate images of your condition. Ask about it.

I am very surprised that prostatectomy surgery is not available in Northern Ireland - I thought you were still part of the UK!

User
Posted 14 Mar 2018 at 21:44

Yep we are!!!! ..... but going through the system of a private company scheme that I am part of, they tend to send men through to somewhere close to Cambridge? Anyway MRI brought forward to end of March which is good so not so long to wait and then take it from there. In the meantime I intend to read as much into the subject as possible ....AS versus other treatments and try and make the right decision based on the findings of the MRI. Thanks for the info on the MRI , I will ask the question .... I thought they were all the same.
Keithyboy.

User
Posted 21 Mar 2018 at 22:54
Hi all , think I posted in the wrong thread !!!!! IT was never a strength of mine. MRI this Friday so will wait and see outcome. This will be third in two years , PSA up and down over the last 6 months , so not sure what's happening.

Best wishes to all.

Keithyboy

 
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