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Husband has just been diagnosed

User
Posted 06 Oct 2014 at 21:39

Originally Posted by: Online Community Member

Countryboy (AKA qwerty), Miss has been told it is aggressive because it is a Gleason 8.

Any Gleason of 8, 9 or 10 seems to be described as aggressive in clinics :-( You could probably look back now and think that your rise at diagnosis was less about aggressiveness and more about whatever you did in the preceding 48 hours!

Miss, wait to see what the rest of the results show .... aggressive is such a scary word but doesn't necessarily mean what we all think when used in relation to prostate cancer.

 

All noted Lyn,

There exists the possibility that my Gleason increase was nothing to do with anything I had done, but was purely down to aggressiveness of my cancer.  How much would any "activity" increase a Gleason score?  I don't know.

I note that Miss's partner's Gleason is now apparently 19.4 up from 8.  Does that make sense?

Dave

User
Posted 06 Oct 2014 at 23:41

Dave,

I think you have misread the post from our recent member 'Miss'. She clearly said that 2 PSA tests were "high" and was told this was 19.4. As you are doubtless aware, the maximum Gleason is 5+5=10. There are a number of reasons including activities why PSA may be elevated. Gleason score increases according to mutation. This mutation may vary with the type of PCa and factors specific to individuals which may be unique and may be unpredictable. I have never seen any report suggesting that Gleason is upgraded by 'activities' in the way that PSA can be.

Barry
User
Posted 07 Oct 2014 at 00:35

DD, are you okay? Your posts seem a little 'odd' for you and I had to check back in case I had misunderstood and Qwerty wasn't you at all :-(

You said above that your PCa was aggressive because your PSA rose from 5.5 to 6.4 ... no-one mentioned your Gleason rising due to activities!!! Miss tells us that her partner's Gleason was 8 and the PSA was 19.4 ... no mention of the PSA rising from 8 to 19.4 at all.

Hope all is well with you

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

User
Posted 07 Oct 2014 at 05:57

Miss

What I would avoid doing is googling PSA scores etc.

You will in all liklihood read loads of rubbish. The PSA is an indicator. 19.4 is higher than normal but if you read some profiles on here you will see it pales into insignificance eg Trevor Booth was 12000 on dx.

I'm surprised that you are having to phone to arrange an MRI and bone scan the urologist should have referred your other half for these.

Anyway, it is easy for all of us to advise you not to worry but try to believe it does get easier and some sense of normality will return. In the meantime go on to the publications area of PCUK and read, read, read. Depending on the outcome of the next tests you may have decisions to make about treatment. Forewarned is forearmed

Take care
Bri

User
Posted 07 Oct 2014 at 07:49

Bri,

You have lost 1000 it was 13000, I knew we would be famous for something.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 07 Oct 2014 at 14:18

Originally Posted by: Online Community Member

DD, are you okay? Your posts seem a little 'odd' for you and I had to check back in case I had misunderstood and Qwerty wasn't you at all :-(

You said above that your PCa was aggressive because your PSA rose from 5.5 to 6.4 ... no-one mentioned your Gleason rising due to activities!!! Miss tells us that her partner's Gleason was 8 and the PSA was 19.4 ... no mention of the PSA rising from 8 to 19.4 at all.

Hope all is well with you

 

Blimey I did misread a lot of that, didn't I?

 

No idea why, and my apologies for any confusion.

 

Dave 

PS: I am well thanks for asking http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

User
Posted 07 Oct 2014 at 17:34

🍺🍺🍺🍺?

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

User
Posted 07 Oct 2014 at 20:47

Hi again,

Just to keep you updated, my husband will be having his MRI scan on Friday 17th Oct, and the date for his bone scan is coming through the post so they couldn't tell us that one! We are trying to be positive and at times life seems to carry on as normal, until you remember again and can't believe that all this is happening. We have told quite a few friends and colleagues now and everyone has been very supportive.
Thanks again for all your kind words and helpful advice,

Miss x

User
Posted 07 Oct 2014 at 20:53

Hi Rob,

 

Thanks for your message and wonderful advice. You are the only person who has mentioned diet so far. This was the first thing that I jumped on and instantly after diagnosis we have gone dairy free, ditched the alcohol, taking the Pomi-T tablets and are following the Plant Programme. Luckily my husband is a very good patient and has totally taken on board the new diet, even managing to drink 2 mugs of green tea this afternoon!

So any other thoughts about diet that you have I'd be really interested to hear them.

Many thanks,

Miss

User
Posted 07 Oct 2014 at 21:26

Good luck with the diet.....I thought about giving up the alcohol, but I'm no quitter

Bri

User
Posted 08 Oct 2014 at 08:02

Miss,

 

I can recommend two books, both of which helped me get myself back in the 'driving seat'....

The Guide to Surviving Prostate Cancer - Dr Patrick Walsh. 

Lifestyle after cancer - The facts - Professor Robert Thomas.  Covers diet, exercise etc. and although 'generalist' it draws a lot of examples from people coping with prostate cancer.

 

The one thing I wish I had done in the early days is to have badgered my local MDT team to get on with a referral. I thought I was special at the time but son learnt one is just a number.

 

flexi

 

User
Posted 08 Oct 2014 at 15:49

To the books that flexi recommended (both of which I have) I'd like to add The Prostate Care Cookbook by Margaret Rayman. This has a useful introduction discussing the properties of many foods and over 100 recipes. The Moroccan Lamb Stew is tasty.
Viv

User
Posted 09 Oct 2014 at 18:07

Hi Miss,

 

Have pm'd you my regime which may be useful.

I can't recommend the Prostate Care cookbook as I have active cancer. I'm sure it is fine for those who don't though & just want to " Care " for the prostate as the title suggests.

The Plant program is  better  so long as you follow the " active cancer " sections whilst on treatments.

 

User
Posted 10 Oct 2014 at 00:34

On the contrary Rob, the cookbook includes some very useful information on diet for men with advanced cancer as well as younger men who would like to avoid developing cancer later in life. The group that is not particularly addressed in the cookbook is those men who have had treatment and would like to help their bodies prevent it from returning.

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

User
Posted 10 Oct 2014 at 19:30

Thanks Lyn,

I did read it through a while back & made comments at that time.

 

http://community.prostatecanceruk.org/posts/t3517-New-cook-book-to-help-fight-male-cancer#post41575

 

There are certainly some ingredients such as soybean oil in the recipes to be well-avoided by all stages of P.Ca. cases. That & other ingredients put me off.

User
Posted 10 Oct 2014 at 20:47

Apparently, the Prostate Cancer Research Foundation does not agree with you Rob!

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

User
Posted 11 Oct 2014 at 18:13

I wonder if they have looked at all of the more recent studies & still agree with all those ingredients as being benign for us ?

Some books become outdated quicker than others.

 

Other than Canola oil & the on-going question over flaxseed, this  contains much useful info. and references.

 

http://cancer.ucsf.edu/_docs/crc/nutrition_prostate.pdf

 

 

 

 

Edited by member 13 Oct 2014 at 16:04  | Reason: Not specified

 
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