hello...wife of a newbie - Gleason

Not sure if it's down to genetics, environment or what but looking at the diversity of men on here PCa seems pretty indescriminate to me.

Having said that I've had the snip...worked in engineering in my former life.....drank copious amounts of beer in my rugby playing days and beyond and still enjoy a pint or three.....never was fussy about my diet....sat on cold concrete etc when a kid (interestingly was always told not do that)....had various sexual relationships before meeting the Mrs....had a bike as a kid....use the static bike in the gym...mother and father both died of heart related conditions in their 70's

Actually I might go and have a few celebratory drinks for managing to reach 55

Bri

Welcome to our forum, I wish somebody had opened a can of worms for me.

PSA 4.7 and spread everywhere.

I will have a beer for you tonight, well done http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

I entirely understand Alison's sentiments, but there is no, as far as I am aware, prevention?  Only early, as early as possible diagnosis, and this means not waiting for symptoms to become apparent, to give the best possible chance of living and surviving.

You have probably ensured that he will live.  Very well done you.  And very very lucky him.

ATB

Dave

Hi Sue,

Well what can I say about this can of worms, should you have opened it HELL YES. This is a conversation that I have had with Mandy many times us lady's are pretty good with a can opener and oh how I wish that I had done this years ago for Trevor. You have done the right thing, awareness is a powerful tool.

BFN

Julie X

You've probably saved his life....

You have done exactly the right thing, and significantly increased your OH's chance of an extended life. Best of luck in choosing your treatment path. Read all the literature you can, there's plenty on this site.

That your husband is unfazed is good. Negative thoughts are unhelpful. Be positive together and good luck.

Paul

Thank you....I'll sleep easier tonight. You seem a close and supportive community, and I'm finding the conversations very informative :)

Sue

Well done, Sue ! The earlier caught the better, as with all cancers. I know PSA is controversial but it's all we have got. My neighbour, who has a heart condition was tested by his cardiologist, just as a precaution. He was diagnosed with PCa. Another life saver !

Fiona.

It's a bit of a rocky road whichever route you decide to take, read the literature, get advice from your clinical nurse specialist colleagues, make the decision and don't look back. Well done.

Love Allison

Thank you Dave, that is really what I meant - prevention of a worse scenario.

Prevention was not really the right word to use though!

Alison xx

Edited by member 18 Jan 2015 at 10:46  | Reason: Not specified

In your circumstances I can see why AS might be a good option at least for the time being .... as part of your decision-making, do check what they mean by active surveillance though. Practice does seem to vary around the country but NICE says that men on AS should have frequent PSA tests, annual DRE and annual MRI. My father-in-law was being monitored simply by PSA test but becasue it fell rather than rising, no-one realised until the day before he died that it was rampaging around his body.

AS using only PSA is not really active at all and would be more appropriately described as watchful waiting :-(

Edited by member 18 Jan 2015 at 18:36  | Reason: Not specified

Just thought I would add so that others here know, throughout Mick's year long battle with advanced and very aggressive PCa you were always there to give me advice,help and comfort both in a professional capacity and as a great friend and member of my extended family.

If Mick had any idea that his own fight gave rise to you taking the action you have he would take great comfort from that. I most certainly do.

Looking forward to many more of those BBQs and I have to say Flossie looks very cute but could Bob the dog join your profile picture?

Kisses to him indoors

Xxx

Mandy Mo

Hmm, that (in bold) maybe.

But, IMHO it is yours too, his and yours, to deal with.  What affects he has will effect you too.

Okay, so he is carrying it, but it will impact on you.  He should have some consideration of that.  

Dave

Edited by member 20 Jan 2015 at 06:23  | Reason: Not specified

Hi Whiterose

I couldn't agree more with the other folk that have said well done you for getting your man tested. There is no doubt that some men understandably get anxious even when diagnosed with low Gleason localised prostate cancer but from what you say your man is quite chilled about it. My Gleason is 7 and I'm quite chilled as well although it's important (to me at least) to look at the various treatments and choose the right one for the individual, whether active surveillance or something else. I imagine many men just want to get rid of the cancer whereas others would feel comfortable with being monitored.

That's the great thing about life - we're all different.

Good luck and well done you for doing your bit for your man. I have a friend who when diagnosed his wife said "it's your problem - you sort it"!

Thank God for women like you and my lovely lady, who also persuaded me to go to the doctor.

dl

Edited by member 23 Jan 2015 at 19:19  | Reason: Not specified

Gleason 6  ONLY 6,  My Gleason scores are below, so you are ahead of me already!   And I am still here nearly 19 moths later.  Cut me some slack and let me enjoy this fact please.

Gleason score 3 + 4 = 7
PSA: 5.6
Biopsies positive to cancer: 3 of 8 sites
Tumour: T2
No evidence of metastatic or extraprostatic disease

12 June 13
T3
3 + 4 = 7
10% of gland is cancerous
No positive margins, all clear

scores 

Being practical now:

1. Have a list of questions that you want to ask and get answers to before you meet the Uro.

2. Write them down 

3. Take a notebook with your questions, and a pen to record the answers given.

4. What treatment options do that NHS trust offer?

5. Can they refer you to another NHS trust if you decide to opt for a treatment that is available elsewhere?

6. What is that surgeons, if you go with them, success rate?  This is measured in terms of life after OP, continence, survival, ED regain.

7. How long is the average stay post treatment?

8. What has been the longest stay post op?

9. What would they opt for in your position?  Some will not say, but, if you get to talk to the man or the women inside the "Doctor" they may open up and tell you?

10. Others will hopefully come up with other questions for you.

Look, you have done so much for him so far with regard to the early diagnosis, and you are clearly THERE for him, he IS indeed fortunate to have you on his team.   

ATB to you both tomorrow.  All my digits are crossed for you.

Dave

Edited by member 30 Jan 2015 at 20:21  | Reason: Not specified

sounds like Alan is getting proper AS ie with scan to benchmark, quarterly PSA checks and repeat biopsy in 12m The decision means no side effects although of course the trauma of knowing is bad enough.

I have edited my reply before this to reflect the fact that even though Dave is a crazy like me his advice was excellent.

Keep telling us how you are both getting along and post for others as your expertise will be invaluable on this forum.

xx

Mandy Mo

Surprised at your post Mo - I understood that less than 10% of adenocarcinomas are linked to either BRCA and that while there are clear familial patterns for men with early onset PCa the same cannot be said for all. Science has yet to prove a genetic link for most PCas and the more likely cause of familial prostate cancers are environmental.

There can still be link to more men who cycle being sent for a biopsy:

"9th March 2012 - Many doctors are unaware that keen cyclists can have raised levels of a protein which is an important indicator for detecting  prostate cancer, says a leading consultant urologist.

A failure to check whether patients spend long spells in the saddle is resulting in otherwise  healthy men being sent for uncomfortable and unnecessary biopsies.

Consultant urologist Christopher Eden, of the Royal Surrey County Hospital in Guildford tells BootsWebMD: "If you're a keen, competitive cyclist, or you're a recreational cyclist who commutes, the trauma of your perineum - which is the bit of you that you sit on - against the saddle is going to massage or injure your  prostate in a minor way and cause inflammation, and the inflammation will drive up the PSA."

Cycling must be so good for you in so many other ways they do need to do more research ASAP otherwise some men may stop cycling through fear of getting PCa.

I guess I am just unlucky then as I don't ride, haven't had the snip, have no relations who have been diagnosed with it, not African-Caribbean, never ate lots of processed food and (despite what my kids think) I am not old. I must confess to scratching my testicles a few times when they have been itchy ....... it's a wonderful feeling. Any link?

Oh .... and I am a man.

dl

he had a vasectomy (definitely)

he rode a bike (a lot)

he was a pilot both private and commercial

He had type 2 diabetes for over 20 years

There was PCa and Bca as well as small cell lung cancer in his family

He ate RAF aircrew food for 20+ years so almost all processed and enriched with pork pies and Beer.

He drove diesel winches and tractors for 40 years or more at gliding clubs anything from 4 - 40 hours a week

Although his diet once he married me was near perfect, it certainly wasn't in his first 40 years

He never smoked but his parents and grandparents who he grew up with all did heaviy, gliding club bars and RAF crew rooms were always full of heavy smokers so he probably was a 30 a day passive smoker until 20 years ago!

Now we are told one in two will get some type of cancer I reckon his rsk factor must have been about 99% I have given him that slightest of margins as far as I know he had no African/Caribbean blood.

Now I think I need to party like a crazy person before I too fall victim to statistics

xx

Mandy Mo