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Slow falling Psa score, tertiary G5 and radiation proctitis

User
Posted 28 Jul 2016 at 23:45
It's been 18 months since I finished RT and my first reading in March 15 showed a level of 0.5. I was really pleased by this and in the following July it fell to 0.2, again another encouraging result.

But in January of this year my levels remained at 0.2 and I confess I was concerned that they hadn't dropped lower. Perhaps 0.2 would be my nadir ? There was a very useful comment made by Dave Kirkham on a post several months ago, who said that you have to hold your nerve in this game about levels, and he was right (thanks Dave, that was very helpful to me, useful advice). I stopped worrying then until the approach of today's meeting, which I was dreading.

Today I was informed that my levels are now showing as undetectable, well below 0.1 and I was really delighted. I am to continue for a further year on HT but do not mind at all ( can't believe I'm writing that, I hate HT but if it's keeping me going , then I'll endure it!) .

I asked about my Gleason score of 5 + 4 + 3 and was told that I had 32% grade 5 Gleason showing after the biopsy , just 1 % behind Gleason 3 , so could so easily have been Gleason 9. In view of the G5 ,I may face a strong possibility of recurrence. But for now I do not mind, today's results have been very welcome. Whatever I face in the future I know that I've received a good result today.

I started severe rectal bleeding earlier this year and had blood tests for anemia, which came back clear. But the bleeding has continued to worsen, now a daily or even twice daily occurrence. I am being referred to a sister hospital where I will be seen by someone who" delights in this sort of situation , radiation proctitis is her speciality". I will be glad if this situation can be looked at , if only to rule out anything nasty.

Then I popped around to the A and E department ( no, not due to an ED issue ..) but because I tripped over a wire today and have an impacted fractured wrist and am carrying a heavy plaster . So I'm typing this one handed and face 6 weeks of delegating my domestic gardening duties to my wife and one of my daughters . Also I have got out of redecorating our living room, which was due to start on Sunday. Another delay, was due in Jan 15 but RT got in the way then !

I'm also aware that for many on here that you are facing a completely different set of circumstances. I read what is written but do not feel I can contribute in any way. But I am with you with over what you are going through and can only wish you well.

I hope that this post may help others in a similar position to me about slow dropping Psa scores. It often seems that many achieve undetectable readings very quickly but it doesn't always happen to everyone. Have patience and keep your nerve ! (Thanks again ,Dave).

Thanks,

John

User
Posted 28 Jul 2016 at 23:45
It's been 18 months since I finished RT and my first reading in March 15 showed a level of 0.5. I was really pleased by this and in the following July it fell to 0.2, again another encouraging result.

But in January of this year my levels remained at 0.2 and I confess I was concerned that they hadn't dropped lower. Perhaps 0.2 would be my nadir ? There was a very useful comment made by Dave Kirkham on a post several months ago, who said that you have to hold your nerve in this game about levels, and he was right (thanks Dave, that was very helpful to me, useful advice). I stopped worrying then until the approach of today's meeting, which I was dreading.

Today I was informed that my levels are now showing as undetectable, well below 0.1 and I was really delighted. I am to continue for a further year on HT but do not mind at all ( can't believe I'm writing that, I hate HT but if it's keeping me going , then I'll endure it!) .

I asked about my Gleason score of 5 + 4 + 3 and was told that I had 32% grade 5 Gleason showing after the biopsy , just 1 % behind Gleason 3 , so could so easily have been Gleason 9. In view of the G5 ,I may face a strong possibility of recurrence. But for now I do not mind, today's results have been very welcome. Whatever I face in the future I know that I've received a good result today.

I started severe rectal bleeding earlier this year and had blood tests for anemia, which came back clear. But the bleeding has continued to worsen, now a daily or even twice daily occurrence. I am being referred to a sister hospital where I will be seen by someone who" delights in this sort of situation , radiation proctitis is her speciality". I will be glad if this situation can be looked at , if only to rule out anything nasty.

Then I popped around to the A and E department ( no, not due to an ED issue ..) but because I tripped over a wire today and have an impacted fractured wrist and am carrying a heavy plaster . So I'm typing this one handed and face 6 weeks of delegating my domestic gardening duties to my wife and one of my daughters . Also I have got out of redecorating our living room, which was due to start on Sunday. Another delay, was due in Jan 15 but RT got in the way then !

I'm also aware that for many on here that you are facing a completely different set of circumstances. I read what is written but do not feel I can contribute in any way. But I am with you with over what you are going through and can only wish you well.

I hope that this post may help others in a similar position to me about slow dropping Psa scores. It often seems that many achieve undetectable readings very quickly but it doesn't always happen to everyone. Have patience and keep your nerve ! (Thanks again ,Dave).

Thanks,

John

User
Posted 29 Jul 2016 at 08:44

Glad the news this time was so positive John.

Living with the thought that this disease will likely re-occur at some stage must be very difficult so to be able to do a Dave and "hold your nerve" puts you right up there with the brave among us!

Some men will do just about anything to get out of decorating but I feel that using a trip wire was a trifle extreme. Your' wife might have fallen over it instead and then as well as the decorating you would have been cooking and cleaning.

Perhaps be more careful next time where you leave such lethal playthings eh.

I'm sure you'll manage one handed. Shattered my wrist 8 years ago and have it plated. Put paid to a lot of gardening and veg growing for a while.

Hope you heal quickly

**********

We can't control the winds - but we can adjust our sails
User
Posted 29 Jul 2016 at 09:17
Sandra,

Already my domestic chores of cooking and cleaning have been discussed and re-allocated. I'm now on lighter duties but was assured that I would still be able to dust and use the vacuum cleaner! But I have been excused cleaning the bathrooms.

John

User
Posted 29 Jul 2016 at 17:48
Sadly Chris and Ray, my injury is not allowing me a permanent sick note at home. I've just been road tested out on emptying the dishwasher and taking the recycling out. Sadly I passed with flying colours. Must do worse on the next task.

But I really do not care at all, I'm still getting over the delight of yesterday's news .....

User
Posted 29 Jul 2016 at 07:59

John, I am so pleased for you with the lower PSA score and yes we have had a bit of a competition about our scores but that's the fun side and I know there is a serious condition here that you are trying to keep the lid on. I am "lucky" that I do not have the same risk as you of recurrence and spread but I am with you all the way. I know you worry about the future as I know I do and my risk is minimal to yours.

One handed operations for you over the next six weeks then and you will be an expert before long.

I was asked once if I knew what an expert was and I said yes: an ex is a has been and a spurt is a drip under pressure! Boom boom.

I hope the investigations find out the reasons for blood in the poo.

Keep the scores down now they are there my friend.

Regards Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 29 Jul 2016 at 15:59

Very good news John long may it continue.

I keep going on Dr Google to see if any studies show chores increases PSA as an excuse to keep well from them but as yet no joy.

Ray

User
Posted 30 Jul 2016 at 11:14

Isn't there a saying about being able to sweep the floor with no hands at all??? But perhaps not a great idea in view of your other current problems! 

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User
Posted 29 Jul 2016 at 07:59

John, I am so pleased for you with the lower PSA score and yes we have had a bit of a competition about our scores but that's the fun side and I know there is a serious condition here that you are trying to keep the lid on. I am "lucky" that I do not have the same risk as you of recurrence and spread but I am with you all the way. I know you worry about the future as I know I do and my risk is minimal to yours.

One handed operations for you over the next six weeks then and you will be an expert before long.

I was asked once if I knew what an expert was and I said yes: an ex is a has been and a spurt is a drip under pressure! Boom boom.

I hope the investigations find out the reasons for blood in the poo.

Keep the scores down now they are there my friend.

Regards Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 29 Jul 2016 at 08:14
Chris,

Trust you to comment on one handedness for my "exercises". It will be an interesting time but I'm sure I'll find a way to cope !

John

User
Posted 29 Jul 2016 at 08:44

Glad the news this time was so positive John.

Living with the thought that this disease will likely re-occur at some stage must be very difficult so to be able to do a Dave and "hold your nerve" puts you right up there with the brave among us!

Some men will do just about anything to get out of decorating but I feel that using a trip wire was a trifle extreme. Your' wife might have fallen over it instead and then as well as the decorating you would have been cooking and cleaning.

Perhaps be more careful next time where you leave such lethal playthings eh.

I'm sure you'll manage one handed. Shattered my wrist 8 years ago and have it plated. Put paid to a lot of gardening and veg growing for a while.

Hope you heal quickly

**********

We can't control the winds - but we can adjust our sails
User
Posted 29 Jul 2016 at 09:17
Sandra,

Already my domestic chores of cooking and cleaning have been discussed and re-allocated. I'm now on lighter duties but was assured that I would still be able to dust and use the vacuum cleaner! But I have been excused cleaning the bathrooms.

John

User
Posted 29 Jul 2016 at 11:03

Your wife sounds like my kind of woman. !!

Doing her level best to keep you distracted from your discomfort. How thoughtful is that


******

We can't control the winds - but we can adjust our sails
User
Posted 29 Jul 2016 at 15:59

Very good news John long may it continue.

I keep going on Dr Google to see if any studies show chores increases PSA as an excuse to keep well from them but as yet no joy.

Ray

User
Posted 29 Jul 2016 at 17:32

Ray, I am sure that we could do an in house study on the reasons to avoid housework at all costs for those with PCa, if all those "unbiased" members give their reasons we can analyse the results and put forward our scientific research together with the outcome of opinion.

John seems to have got off with a flying start, perhaps we could also see what you can get away with not doing as well as avoiding for health reasons.

Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 29 Jul 2016 at 17:48
Sadly Chris and Ray, my injury is not allowing me a permanent sick note at home. I've just been road tested out on emptying the dishwasher and taking the recycling out. Sadly I passed with flying colours. Must do worse on the next task.

But I really do not care at all, I'm still getting over the delight of yesterday's news .....

User
Posted 29 Jul 2016 at 17:51

John your inbox is full again!! Who you been writing to?

User
Posted 30 Jul 2016 at 11:14

Isn't there a saying about being able to sweep the floor with no hands at all??? But perhaps not a great idea in view of your other current problems! 

 
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