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Diet and Exercise

User
Posted 06 Mar 2019 at 21:53

Thanks Lynn, Although reading your profile I had missed any comment on Jon’s age. We all get so swept up in our own case and the situation that we sometimes forget other peoples problems.

When I spoke to my assigned cancer nurse  at my recent review when she told me about my 0.2 reading  I asked her about where I go from here in relation to my opening reading of 38 to my current 0.2 PSA reading.

 She told me she had been a nurse for 30 years and even though I stop HT this October she said with my progress and post RT  prognosis it was extremely unlikely that my cancer would come back.

 But I am under no illusion as to where I am going from here especially looking at Pete W’s post.

I am not refuting an oncologists prognosis on my situation, but with the reality of what could happen, I might be 0.2 now but I’m still on hormone therapy until October and nobody knows what will happen once I stop the therapy.

I am totally realistic about where I am going from now until after I stop formal HT and where I go on from there I will keep everybody on here updated to aid them in looking at their own situation

 

Edited by member 06 Mar 2019 at 21:57  | Reason: spelling

User
Posted 06 Mar 2019 at 22:29

My membership and posting on this site have changed so much in the last year.

I got my diagnosis of Gleason 4:5 T2c exactly 1 year ago.

 I joined this site in an extremely distressed state from knowing nothing at all about my situation and I have progressed to where I am today mainly due to the support and advice I have received  here.

 I have received a lot of information to assist me on my journey and much of it has been Given in a balanced and informative manner for that I am extremely grateful.

Of course there are too many to mention But I would like to mention Lynn, advice always given in a straightforward manner, for always giving a balanced and informative reply to all my questions.

I find myself moving on from when I really needed mainstream help on this site to come to terms with my cancer, to the situation where I can now offer help to people newly diagnosed.

  I suppose it is typical that now I have completed a year of hormone therapy and five weeks of radiotherapy and move towards remission I find myself perhaps needing less help from this site.

 But I would always keep up-to-date with the site to see if there is anything at all that I have experienced in my journey that may help others who are newly diagnosed 

 

 

Edited by member 06 Mar 2019 at 22:34  | Reason: Not specified

User
Posted 06 Mar 2019 at 22:38

Originally Posted by: Online Community Member

 I think I am well aware I’m correct in saying that most oncologists say that if we have five years cancer free you are well into remission.  

That seems to be a bit of a misunderstanding - NHS position is that remission is 10 years progression free, not 5 years. Anyone getting to 5 years should celebrate but never take their eye off the ball - my dad was undetectable for 13 years but it still came back. 

Your PSA is holding low and steady on HT and your team will be looking for your nadir around 18 months post-RT - if you are no longer on HT at that point then it will be your true nadir which will be fine as long as it is under 2.0

I have good vibes for you, my friend 

 

 

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

User
Posted 06 Mar 2019 at 22:39
Only a year! It seems like we have been together so much longer 😉
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Mar 2019 at 22:42

Originally Posted by: Online Community Member
Thanks Lynn, Although reading your profile I had missed any comment on Jon’s age. We all get so swept up in our own case and the situation that we sometimes forget other peoples problems.

 

Ah no, I meant it the other way - that he is younger AND 7 years post-treatment so the Ride London 100 is not as challenging as you doing the 57 miler 🚴‍♂️👍

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

User
Posted 07 Mar 2019 at 08:12

Just caught up on all your posts Lynn and Alan. My PSA count is still very low (from zero steadily rising to 0.3 in 12 months). I was surprised how enthusiastic the oncologist was to get treatment started straight away. I had anticipated him to say to watch it steadily rising and start RT and HT later. Or worse start long term HT: I've always had a dread of HT due to the side effects I have read about. 

I had hoped to remain fit and "healthy" until my planned retirement autumn next year when my daughter finishes her midwife training.

But I guess it's best to get this thing dealt with and get back to a good state of fitness next year. I've still not done an Ironman or ultra run. And I was keen to get back to time trialling! 

I'm going through a difficult time but it's been really helpful chatting in this forum. Hope to meet you soon Alan. 🚴‍♂️🚴‍♂️

 
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