I have been a bit quiet on the forum of late most think it is because I have been busy with our puppies in truth I have been trying to keep Trevor of his bloody Bike.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif
Just joking he can ride a bike, well sort of he certainly couldn't compete in the Tour de France.
So common denominators in PCA , can Trevor fly a plane , absolutely not he can drive the ride on though. Could he be described as a grease monkey no and he is not very good at DIY either.
So I got to thinking what could it be that he has in common with 67% per cent of Afro Caribean men in the USA apart from the obvious , being crap at ironing, eating Jerk Chicken , and an extra 4 inches. Of course the ironing is just a joke he is actually very good at ironing.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif
So I did a little bit of studying apparently blacks in the United States have the highest pca rate in the world and nearly twice that of white men the 2-1 ratio is already apparent at the age of 45. So obviously my first thought was OMG have they all got bikes, no but what they do have is a high testosterone at an early age. The report found that the difference occurs in early life testosterone has long been thought to play a role in Etiology of pca. Testosterone and it's metabolite dihydrotestosterone are the principle function of prostate tissue. But can they do the ironing , no. The report does say that circulating hormone levels were 19% higher in black students than in white students and free testosterone levels were 21% per cent higher in the black students.
We all know that lowering testosterone is important in controlling pca so here is my random thought for the day what if high testosterone in young men black or white over stimulates the prostate gland in the early years helps in some way to as Sue would say prematurely wear out the blue print .
This is my thought for the day
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
User
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
Don't deny the diagnosis; try to defy the verdict |
User
You were right to get this checked out, and should be so pleased that you did.
There are many of us on here who wish that we had caught things earlier, afterall prevention is better than cure.
All the best
Alison
User
Originally Posted by: Online Community MemberYou were right to get this checked out, and should be so pleased that you did.
There are many of us on here who wish that we had caught things earlier, afterall prevention is better than cure.
All the best
Alison
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
User
I Will add bob the dog immediately. And if I can ever give my skills in emotional and psychological support on here...I'd be glad to....
Xxxxx
User
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
NEVER LAUGH AT A LIVE DRAGON |
User
Hi,
Just entering this weird world of prostrate cancer. I work in the cancer field, so was the one who encouraged my husband to have his PSA checked last September, as a friend of ours had died of prostate cancer recently. The medical centre were reluctant as he had no symptoms and he's 62. However it was very marginally up (5.00). GP did DRE, all felt normal, so we thought that was an end to it. A check three months later showed it was now 7.4, so referred for biopsy.
The DRE repeated and this time the person said it felt firm. My husband said the biopsy wasn't too bad, but the bumpy bus ride home was a bit tender on the parts :).
We went for results last Wednesday. A wierd experience for me as I was a Clinical nurse specialist in cancer care for many years. Sitting on the receiving end with fingers crossed, was quite surreal. Actually news wasn't too drastic...gleason 3 + 3 (3/10 cores with cancer in) ...now for urology appointment and MRI. A bewildering array of treatment choices, although it may be active surveillance is best for now? My husband seems quite unfazed by it all...
My question to everyone here is have I opened a can of worms asking him to have PSA checked, as he was symptom free? Feeling guilt.....
Your opinions appreciated...
Thankyou,
Edited by member 17 Jan 2015 at 22:50
| Reason: Not specified
User
You've probably saved his life....
User
Hello and welcome
its probably the best thing you have ever done for him
Bri
User
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
Stay Calm And Carry On. |
User
Hi and welcome
I wish Eric had that can of worms opened.
Eric was dx with aggresive metatistic pca given 18mnths he was 62 had HTH
no trials for him with his heart condition and other underlined y problems sadly Eric passed away on July he was 65.
Eric's psa on dx was 47 his gleason was 9.
Have you done the right thing ?
Well done you.
Carol
User
Thank you....I'll sleep easier tonight. You seem a close and supportive community, and I'm finding the conversations very informative :)
Sue
User
I am also the wife of a man newly diagnosed with PC. His was picked up as an irregularity in his prostate during a routine colonoscopy and then the roller coaster to diagnosis. We have our first appointment with the urologist this Wednesday after receiving results from the GP who was a bit blasé about it. 9 out of 18 cores positive. 8 of these 3+3 but one a worrying 4+3 with ductal Cancer as well showing up in this core. I glean from this site that his score will be 4+3 which is not so good. Am trying to stay positive but in reality am scared as hell. You have been very responsible and probably saved your hubby from a much worse scenario.. All the best . Georgina.
User
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.
User
Hello Whiterose and welcome.
The guilt you feel now is because you set the ball rolling for that can to be opened.
How would you have felt if a few years down the line it was only discovered too late, especially if you had already thought about it previously as being a good idea and then dismissed the thought from your mind.
You are living with regrets now, but you are living those in the company of your husband.
A few years down the line, with no diagnosis given, you could still be living those regrets and if onlys, but you might be living them alone.
Love him, support him. Keep your strength for looking after him, not for beating yourself up, because hindsight is a wonderful thing.
Best Wishes Sandra
Edited by member 18 Jan 2015 at 09:54
| Reason: Not specified
We can't control the winds - but we can adjust our sails |
User
Totally agree that you've done the right thing. I wish my husband had had a PSA test earlier at least that's one thought you won't have later!
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
User
Hi Sue,
Welcome to the site. You'll always find the people on this site are here for you.
I totally agree with everyone else. You did the right thing. Well done!
Steve
User
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
User
Hi there Sue
Of course you did the right thing and should you feel like you opened a can of worms hell NO ... I am just so pleased that you got your man to do this.
This forum is great for discussing options and giving ideas on what to question of the medical team caring for your husband. The tool kit is really informative and even knowing your background and expertise I know you will still find stuff in there that will help.
I have to say at 62 with a low Gleason score active surveillance with the lack of side effects that treatment can bring may seem like the best option, but with a significant increase in PSA over 3m I would be checking out options for brachytherapy a lot of hospitals will not consider this if the PSA goes over 25 so maybe AS but if it continues to climb be ready to make a quick but informed decision.
Xxx
Mandy Mo
User
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
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
General advice on Active Surveillance indicates action ( treatment ) usually recommended if more than two cores involved and more than 5% cancer found in core.
Without knowing the % of cores involved it's difficult to recommend AS.
User
Sue
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
User
Don't beat yourself up Sue. You just care and this is one way of you doing what you can. I have PC and I am delighted when my wife shares the burden of research. That said, you know your husband so if he is not ready for what you know then keep and digest for if/ when he is. Just make sure you don't bottle up inside what you know so that it hurts you, use this or other charities nurses for a chat they are all good and all listen. Take care, Kev Today has been a good day.
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
User
Originally Posted by: Online Community MemberI've realised today, that I am so obsessively looking at all the research and data, and I'm forgetting that my husband is not anywhere ready to think about that. I must remember this is his cancer, not mine!
Sue:)
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
User
Your husband will be so grateful that you are researching options for him, as perhaps he cannot cope with doing it himself at this time.
My OH often tells others that when I did this it helped him immensely and he is very grateful.
With your experience you will be a force to be reckoned with.
What a great wife to have.
Alison x
User
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
User
Thank you all for your fabulous encouragement and support. The Prostate Cancer UK tool kit arrived today. As a cancer nurse I was very impressed with it. My other half took one look at it and said 'There's no way I can read through all that!'. I think I'll have drip feed it to him bit by bit.
He said he had a reality check yesterday when (I think) talksport was on, and their charity is this one. They had been talking about the charity, and he suddenly realised he was now a prostate cancer statistic...
Night night all,
Sue
User
Originally Posted by: Online Community MemberTomorrow we have first meeting with urologist. Al hasnt had MRI scan yet , so I can't imagine he has much to add. I feel nervous...I keep telling myself (and him indoors) that tomorrow won't really tell us anything new. Whilst my logical brain says a Gleason 6 is actually nothing to worry about...I keep thinking why was there a small amount of cancer in both lobes. Is there anything in particular we should ask tomorrow?
Sue x
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
User
thinking of you Sue, Dave is one of our crazy gang so he has a DARK sense of humour ..ha ha
xx
MM
PS
Dave may have the zaniest sense of humour but he is also very clever his advice here is brilliant for going in prepared.
xx
Edited by member 01 Feb 2015 at 09:27
| Reason: Not specified
User
Sue that is great news
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
User
Sue unfortunately this is very much a hereditary disease, the medics say first line male family members should be thinking about testing as young as 40. There is also a lot of information pointing towards brca 2 genetic commonality for certain types of prostate cancer, so sons or brothers of women with breast or ovarian cancer may also be at risk.
So much new research is supporting genetic mapping for cancer as bespoke treatment might be the way forward in the future especially when it transpires that drugs never previously used for a specific cancer, can be far more effective and with far fewer side effects.
I wish I was 40 years younger and just starting out in a career as the whole subject of molecular genetics and research is fascinating
Xxx
Mandy Mo
User
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.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Lyn that is why I specifically said some PCas. If by environmental you mean typical diet or lifestyle then how does that explain men who leave home and sometimes country to pursue education or career who still fall victim.
M M
User
Quote:
Originally Posted by: Online Community Member I also guess the riding the bike link is simply because riding a bike is linked to an elevated PSA so when a cyclist has a routine PSA test their PSA is likely to be above normal and therefore they are more likely to be sent for a biopsy.
dl
No, it is based on a thread on here some time ago where some of us put up details of previous employment, hobbies, etc to see what commonalities there might be. A significant proportion were keen cyclists but then again how many boys don't have a bike at some time in their lives?
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
User
Hi, just thought would say whiterose that my other half is a farmer so is always spraying the fields with fertilisers and various pesticides, I am sure none of these are good for his health, not forgetting many of these pesticides end up in our food, our crops do not go for human food but the cattle eat the hay, straw and barley, then the cattle go to slaughter for humans to eat, so it gets into the food chain. It would be interesting to see a study of people that have followed a strict organic diet too.
Edited by member 04 Feb 2015 at 12:15
| Reason: Not specified
User
Poor Mick never stood a chance ...he was a man (definitely)
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
User
Sorry it's not 4 inches, 4 cms.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif
X
NEVER LAUGH AT A LIVE DRAGON |
User
Hi Louise,
It sounds like you, ( even more than me) did the right thing sending him for the test. The GP practice seem remiss in not alerting your husband to the raised PSA level result...and it was only looked at again when your husband went back to GP for something else.
The men on this website seem both open and encouraging about the post op recovery stages...from what I've read, its still relatively early stages in the recovery phase re urinary incontinence...and the impotence seems to have a myriad of techniques to help as time progresses.
Like me, you may be feeling that ' now look what I've done' feeling. But, I can truly say you acted (unknowing) in the nick of time....as your husband's prostate cancer was needing to be discovered.
Sending a big hug to you from a fellow member of the 'guilt' club xx
Sue
Show Most Thanked Posts
User
You've probably saved his life....
User
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
Don't deny the diagnosis; try to defy the verdict |
User
Hello and welcome
its probably the best thing you have ever done for him
Bri
User
You were right to get this checked out, and should be so pleased that you did.
There are many of us on here who wish that we had caught things earlier, afterall prevention is better than cure.
All the best
Alison
User
Originally Posted by: Online Community MemberYou were right to get this checked out, and should be so pleased that you did.
There are many of us on here who wish that we had caught things earlier, afterall prevention is better than cure.
All the best
Alison
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
User
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
Stay Calm And Carry On. |
User
Hi and welcome
I wish Eric had that can of worms opened.
Eric was dx with aggresive metatistic pca given 18mnths he was 62 had HTH
no trials for him with his heart condition and other underlined y problems sadly Eric passed away on July he was 65.
Eric's psa on dx was 47 his gleason was 9.
Have you done the right thing ?
Well done you.
Carol
User
Thank you....I'll sleep easier tonight. You seem a close and supportive community, and I'm finding the conversations very informative :)
Sue
User
I am also the wife of a man newly diagnosed with PC. His was picked up as an irregularity in his prostate during a routine colonoscopy and then the roller coaster to diagnosis. We have our first appointment with the urologist this Wednesday after receiving results from the GP who was a bit blasé about it. 9 out of 18 cores positive. 8 of these 3+3 but one a worrying 4+3 with ductal Cancer as well showing up in this core. I glean from this site that his score will be 4+3 which is not so good. Am trying to stay positive but in reality am scared as hell. You have been very responsible and probably saved your hubby from a much worse scenario.. All the best . Georgina.
User
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.
User
Hello Whiterose and welcome.
The guilt you feel now is because you set the ball rolling for that can to be opened.
How would you have felt if a few years down the line it was only discovered too late, especially if you had already thought about it previously as being a good idea and then dismissed the thought from your mind.
You are living with regrets now, but you are living those in the company of your husband.
A few years down the line, with no diagnosis given, you could still be living those regrets and if onlys, but you might be living them alone.
Love him, support him. Keep your strength for looking after him, not for beating yourself up, because hindsight is a wonderful thing.
Best Wishes Sandra
Edited by member 18 Jan 2015 at 09:54
| Reason: Not specified
We can't control the winds - but we can adjust our sails |
User
Totally agree that you've done the right thing. I wish my husband had had a PSA test earlier at least that's one thought you won't have later!
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
User
Hi Sue,
Welcome to the site. You'll always find the people on this site are here for you.
I totally agree with everyone else. You did the right thing. Well done!
Steve
User
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
User
Hi there Sue
Of course you did the right thing and should you feel like you opened a can of worms hell NO ... I am just so pleased that you got your man to do this.
This forum is great for discussing options and giving ideas on what to question of the medical team caring for your husband. The tool kit is really informative and even knowing your background and expertise I know you will still find stuff in there that will help.
I have to say at 62 with a low Gleason score active surveillance with the lack of side effects that treatment can bring may seem like the best option, but with a significant increase in PSA over 3m I would be checking out options for brachytherapy a lot of hospitals will not consider this if the PSA goes over 25 so maybe AS but if it continues to climb be ready to make a quick but informed decision.
Xxx
Mandy Mo
User
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
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
The support here is fantastic, and also well researched advice. Edamo and her husband are the friends I refer to....we have sat at many of a mutual friend's BBQ having a laugh and putting world to rights. Alan and I were devastated when Mick got prostate cancer but his humour and ability to get on with things made us proud to know him. Its through Mick that I suggested Alan have his PSA checked. A question I 'd like to ask the urologist is the significance of his PSA velocity....is went up from 5 to 7.4 in three months. Thank you everyone for your wise and helpful words....x
Sue
User
General advice on Active Surveillance indicates action ( treatment ) usually recommended if more than two cores involved and more than 5% cancer found in core.
Without knowing the % of cores involved it's difficult to recommend AS.
User
Sue
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
User
I Will add bob the dog immediately. And if I can ever give my skills in emotional and psychological support on here...I'd be glad to....
Xxxxx
User
I've realised today, that I am so obsessively looking at all the research and data, and I'm forgetting that my husband is not anywhere ready to think about that. I must remember this is his cancer, not mine!
Sue:)
Edited by member 19 Jan 2015 at 20:23
| Reason: Not specified
User
Don't beat yourself up Sue. You just care and this is one way of you doing what you can. I have PC and I am delighted when my wife shares the burden of research. That said, you know your husband so if he is not ready for what you know then keep and digest for if/ when he is. Just make sure you don't bottle up inside what you know so that it hurts you, use this or other charities nurses for a chat they are all good and all listen. Take care, Kev Today has been a good day.
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
User
Originally Posted by: Online Community MemberI've realised today, that I am so obsessively looking at all the research and data, and I'm forgetting that my husband is not anywhere ready to think about that. I must remember this is his cancer, not mine!
Sue:)
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
User
Your husband will be so grateful that you are researching options for him, as perhaps he cannot cope with doing it himself at this time.
My OH often tells others that when I did this it helped him immensely and he is very grateful.
With your experience you will be a force to be reckoned with.
What a great wife to have.
Alison x
User
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
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Thank you all for your fabulous encouragement and support. The Prostate Cancer UK tool kit arrived today. As a cancer nurse I was very impressed with it. My other half took one look at it and said 'There's no way I can read through all that!'. I think I'll have drip feed it to him bit by bit.
He said he had a reality check yesterday when (I think) talksport was on, and their charity is this one. They had been talking about the charity, and he suddenly realised he was now a prostate cancer statistic...
Night night all,
Sue
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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
NEVER LAUGH AT A LIVE DRAGON |
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Tomorrow we have first meeting with urologist. Al hasnt had MRI scan yet , so I can't imagine he has much to add. I feel nervous...I keep telling myself (and him indoors) that tomorrow won't really tell us anything new. Whilst my logical brain says a Gleason 6 is actually nothing to worry about...I keep thinking why was there a small amount of cancer in both lobes. Is there anything in particular we should ask tomorrow?
Sue x
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Originally Posted by: Online Community MemberTomorrow we have first meeting with urologist. Al hasnt had MRI scan yet , so I can't imagine he has much to add. I feel nervous...I keep telling myself (and him indoors) that tomorrow won't really tell us anything new. Whilst my logical brain says a Gleason 6 is actually nothing to worry about...I keep thinking why was there a small amount of cancer in both lobes. Is there anything in particular we should ask tomorrow?
Sue x
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
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Thank you Dave. Much appreciated!
Sue x
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thinking of you Sue, Dave is one of our crazy gang so he has a DARK sense of humour ..ha ha
xx
MM
PS
Dave may have the zaniest sense of humour but he is also very clever his advice here is brilliant for going in prepared.
xx
Edited by member 01 Feb 2015 at 09:27
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Hi all
We met urologist today at castle hill hospital. Quite a quick appointment but the consultant seemed very good. Active surveillance for now.
MRI in April which will be a reference point to look back on, if further scans in future. 3 monthly PSA checks, repeat biopsy in a year. Confirmed that OH can't have external R/T because of his longstanding ulcerative colitis.
Feels like immediate panic over....can relax a bit now.
Thank you so much to everyone here for the support and encouragement....
Love Sue xx
Edited by member 01 Feb 2015 at 00:02
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Sue that is great news
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
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Hi Mandy...and Dave...the advice given here has helped clarify things for me. I will keep the forum up to speed with how we get on. Also if I can be of any help here..support wise,..do get in touch. Ironically Al's brother just had a prostate biopsy...as PSA 75...
Hmmmm....
Love Sue x
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Sue unfortunately this is very much a hereditary disease, the medics say first line male family members should be thinking about testing as young as 40. There is also a lot of information pointing towards brca 2 genetic commonality for certain types of prostate cancer, so sons or brothers of women with breast or ovarian cancer may also be at risk.
So much new research is supporting genetic mapping for cancer as bespoke treatment might be the way forward in the future especially when it transpires that drugs never previously used for a specific cancer, can be far more effective and with far fewer side effects.
I wish I was 40 years younger and just starting out in a career as the whole subject of molecular genetics and research is fascinating
Xxx
Mandy Mo
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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.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Lyn that is why I specifically said some PCas. If by environmental you mean typical diet or lifestyle then how does that explain men who leave home and sometimes country to pursue education or career who still fall victim.
M M
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Hi Mo,
You said "it is very much a hereditary disease" - I was asking if you learnt that on the course?
Much of the environment is set in childhood - our onco says diet needs to be changed for teenage boys & young men if we are to eradicate PCa - most will live in the same house, eat the same food, drink the same water as their fathers, tinker around with the bikes together, perhaps take apart the odd engine or two. By the time they grow up and leave home, maybe the damage is already done?
In our village, you can plot the homes of people who died of brain tumours and they fall on a perfect straight line extending a mile. No pylons in sight. Water? Radon? Virus? One day we will know these things :-(
Lyn x
Edited by member 03 Feb 2015 at 02:40
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"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Oooo....I love a good debate:)
There seem to be genetic and environmental factors involved in developing many cancers including prostate cancer. A useful paper 'Genetic variants associated with predisposition to prostate cancer and potential clinical implications' (Journal of International Medicine. March 2012) notes that 'Family history is one of the strongest risk factors for prostate cancer; the risk of developing the disease doubles for men with a first degree relative affected by prostate cancer and increases further with more affected relatives. The higher incidence of prostate cancer observed amongst monozygotic versus dizygotic twins suggests familial aggregation results from genetic rather than shared environmental factors. Furthermore, twin studies report heritable factors (germline mutations) may explain as much as 42% of prostate cancer risk.'
Interesting....
Warm wishes
Sue
User
It is Sue, but put against the statistic that 70% of men in their 70s and 80% of men in their 80s will have prostate cancer (whether diagnosed or not) the familial link becomes almost laughable. The greatest risk factor for PCa is being a man, closely followed by getting older. The genetics and environmental factor debate is, I think, much more significant when looking at families where the women and men are diagnosed at an unusually young age. John was dx at 50 but his dad was nearly 80 and there is no history of breast cancer or PCa in the family - I can't accept that there was a gene at play here and would much prefer to think it was about where or how John lived his early life (although it does worry me that it is my fault - the dreadful diet I fed him for years and all that microwave cooking before we knew any better).
Mo, I really wish now that I had enrolled on the course - has there been anything on genetic predisposition? Is it that some male families are more likely to be affected by the environment than others?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Hi Lyn,
I must admit it's strange that many men have prostate cancer which may never become an issue...the consultant the other day told Alan that for every three men on active surveillance with low grade prostate cancer, only one of those would end up needing treatment at some point.
In my adult oncology course lectures, the causes of cancer were often said to be a number of factors. Simply put, (they said) cancer cells are our normal cells that have gone off the original template. Our cells reproduce and split themselves faithfully, following the original cell's blue print. However, a range of factors (genetic, environmental and social) keep tampering with the some of our cells, and the photocopying gets less and less like the original over time. Those cells become cancer cells.
When I worked in breast cancer care, the consultant would sometimes suggest genetic testing, if we had a young patient diagnosed, with no family history. Some of that was to do with genes that haven't been discovered yet, it's all in it's infancy at the moment. By young though, I mean late teens/early twenties...
Cancer Research UK say that 'If you have more than one first degree relative diagnosed with prostate cancer (at any age) your risk is about 4 times that of the general population'. That still only accounts for a small percentage of the total prostate cancer cases, though, so age and being male, as you rightly said, are the biggest risk factors!
I may have to lie down after all this thinking...
Sue x
User
Trevor has 1 full sister , 5 half brothers and 3 half sisters this story is going to get a bit complicated so you need to concentrate. 3 of the half brothers have died of pca. Trevor making 4 out of 6 male children to have pca. (that we know of)
Brother no 1 and the eldest of the children was born and raised in Jamaica his mother was Jamaican.
Trevor's Dad then emigrated to England and married Trevor's Mum , Trevor's Mum was Jamaican she arrived in England the year before his Dad , Trevor and his sister were born in Nottingham , they moved to London when Trevor was around 4, soon after this his Dad divorced his Mum and left.
Brother no 2 was born in England but the new family emigrated to America when he was around 2 years old , this Mum was white (so the children where mixed race.
Brother no 3 , Trevor's Dad never hung about very long so he had divorced wife no 2 and married wife no 3 she was from Canada and was of Chinese descent , emigrated to Sweden . This is where brother no 3 was born.
So all from different Country's with different mothers, I can't see environment being a link to any of them . Trevor's Dad didn't really hang around long enough to have an influence on diet.
The eldest brother was the one that lived the longest , mid seventies the others are younger than Trevor so would have been in there late 50s to early 60s.
Trevor's Dad some how ended up in a nursing home in Kent , he died of a stroke alone with no family around him he was 62.
I will leave you all to draw your own conclusions to this story, but certainly food for thought.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
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Hi Julie...
I always smile at the photo of Trevor...he look's a nice guy.
His Dad has produced a complex family tree, and a high incidence of prostate cancer within the family. As you so rightly say, food for thought. Sounds sad, but possibly predictable that Trevor's dad was eventually on his own....
Thank you for joining in this interesting discussion....I can feel more reading up going to be necessary:) (by me)
Sue x
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Hi everyone,
A very interesting post. Unfortunately I am still very worried about our son who had a grandfather and father diagnosed with PCa, also a paternal grandmother with breast cancer. My only hope is he ate a mainly healthy diet because I wanted to lose weight. He tries to exercise/keep his weight down. Loved the thought that the main risk for Pca is being male,sorry Lynn, but it made me chuckle. Phew Julie how do you keep up with Trevors relatives- tho perhaps you can visit a lot?! Back to reality -perhaps our son should take out private insurance just in case? Brain overload coming on..
Edited by member 03 Feb 2015 at 15:56
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Prof Ros Eeles of the ICR and the Royal Marsden is a leading researcher on BRCA-mutation carriers and prostate cancer. She is currently leading an international trial on determining if regular screening of men with BRAC1 and BRAC2 mutations will lead to earlier diagnosis of aggresive prostate cancer (IMPACT study). She also has another study running to investigative if family profiling can help in predicting prostate cancer risk. (PROFILE study).
I completed a questionnaire for the PROFILE study but I am not sure if I proved much useful information as many of the questions concerned the health and causes of death of my extended family (grandparents, parents, siblings, aunts and uncles). As I am over 70 all of my grandparents, parents and aunts and uncles are long since gone and my knowledge of any illnesses they may have had was limited in the extreme.
Information on Ros Eeles and the studies can be found here
Edited by member 03 Feb 2015 at 16:02
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Julie, I guess your computer screen is not wide enough for a family tree?
Amended risk factor list:
1. Being a man
2. Getting older
3. Being of African-Caribbean descent
4. Having close relatives who had early onset PCa or BCa (genetics or predisposition to external causes??)
5. Riding a bicycle (there is no reliable research to support this one so I am basing it on members of this forum disclosing on an old thread)
6. Work related to chemicals, oil, flying, engines (as above)
7. Eating lots of processed meats, dairy and ready meals as a young man (Jane Plant & PCR-UK)
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Laughing at the only true ' have to be' when Mick was too sick to go to his appointment with lovely Dr B at the PCa clinic, he asked if I could go along instead, man did I get some funny looks!! When I told Dr B he got all embarrassed as he just hadn't thought about that one, Bless him.
The university of Bath course covered all aspects on the molecular genetics of PCa as well as some interesting discussions on environmental issues and diet. It was well worth doing and talking to others who did it a few years before me it is thoroughly updated every time it is run with any new information from research.
Xx
Mandy Mo
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Very interesting thread this one.
Lyn - I have 4 brothers and the diversity of what we ate and what we did in our spare time is amazing! I also guess the riding the bike link is simply because riding a bike is linked to an elevated PSA so when a cyclist has a routine PSA test their PSA is likely to be above normal and therefore they are more likely to be sent for a biopsy.
The chemicals possibility is an interesting one for me as I have 'messed' with so mush nasty stuff in my interesting and varied career. As there is no hereditary link at all for me (at least detected link) I would be interested in any evidence of the chemicals link, especially a link to any particular chemical(s).
dl
User
My father's dad got to 70 when he couldn''t pee, so had his prostate removed in an emergency op. He belonged to a generation where men ignored and didn't talk about their health issues. I don't know whether it was cancerous or not - probably not as he died of a heart attack 7 years later.
My dad (now 86) has had prostate issues since his 60's, and is now on hormone treatment, which is currently bringing down his PSA.
My dad and and I moved away from the area where my grandad lived when my dad was 30 and I was 8. There is a possible environmental link here.
This info doesn't prove anything, but I would suggest that there is a genetic link in my family. I am aware that my 2 daughters now have a higher than average chance of developing breast cancer, but there is none known on either side of my family.
Oh, and of course, Lyn, my dad, grandad and I are all male!
Paul
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