I joined the site today whilst waiting for my lovely hubby to have his bone scan, it was our first trip to Guys hospital.
He psa was checked when he was having other routine blood tests as our gp said that it would be a good idea, no previous prostate symptons but it came back 19.7. They managed to fit him in for a bone scan today, MRI at St Thomas' tomorrow and a biopsy booked for 27th.
I've seen some great posts on here but don't know where to start and my hubby is in ostrich mode, he had a major heart attack in 2010 and was just the same. On a good note the consultant called him young and at 57 he took that as a compliment.
Any advice will be most gratefully received thank you all.
"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne |
User
Hi M,
I think the beginning of a cancer journey is the worst, awaiting answers to all the unknowns is very difficult and affects all of us differently.
My husband similarly didn't want anybody to know about his investigations and cancer diagnosis initially. I personally found this extremely stressful as I felt I couldn't access the support I needed from friends and family. I did in fact let my work colleges know and they became my support. My husband did eventually open up to others when he had got his own head round his diagnosis and on a plan of treatment.
My kids were 12, 16, and 18 when Bob was diagnosed and we agreed they should be told everything from the start but were requested not to discuss with others( I think each of them may have chatted to a close friend). My 16 and 18 year old were both at 6th form, dealt very maturely with all info, and have done very well with there achievements. My 12 year old struggled more,perhaps she had added proB's of pubity. We told her all the facts but in a more simplified manner and answered any questions she asked honestly but I don't think she really understood the implications of what we told her. She's 16 now and doing ok and on an even keel (if 16yr old can be on an even keel!!Ha ha)
I dont think there's a right or wrong way of dealing with cancer worries, all our cancer situations are different,all our kids are different and however you deal with your situation will be right for you.
Hope all goes well for you, enjoy your break.
Lesley xx
User
I joined the site today whilst waiting for my lovely hubby to have his bone scan, it was our first trip to Guys hospital.
He psa was checked when he was having other routine blood tests as our gp said that it would be a good idea, no previous prostate symptons but it came back 19.7. They managed to fit him in for a bone scan today, MRI at St Thomas' tomorrow and a biopsy booked for 27th.
I've seen some great posts on here but don't know where to start and my hubby is in ostrich mode, he had a major heart attack in 2010 and was just the same. On a good note the consultant called him young and at 57 he took that as a compliment.
Any advice will be most gratefully received thank you all.
"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne |
User
Thanks Trish
After spending the whole day, 09.00 - 16.10, at Guys I'm just drained!
Just the thought that others, unfortunately, are going through exactly the same thing helps.
I wish you and your OH well too.
M x
"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne |
User
Dear M,
We were next door at the London Bridge Hospital all day.
Good luck at St Thomas tomorrow.
Trish x
User
Hi MLJ,
One thing not to worry about is Guys. it's a top hospital with top prostate surgeons and oncologists.
flexi
User
Hello MJL and welcome to the site
I did get the Toolkit by post but can't for the life of me remember whether it came in a plain wrapper!!
Reason tells me it does since there maybe many people who do not wish anyone to know initially that they are making enquiries, but that is no guarantee
The only thing I can think of is that you ring and ask one of the nurses who may be able to tell you straight off or perhaps who could find the info for you Tel: 0800 074 8383.
You've made a good start by ordering the toolkit. It can also be read online but the hard copies are handy for constant referral.
Once you have details and if you have any questions please ask away.
We do our best to support each other. We all understand how you feel at this stage since we have either been there ourselves or our partners/fathers have, so we have first hand knowledge of your current bemusement and distress.
Best Wishes
Sandra
We can't control the winds - but we can adjust our sails |
User
HI M
Am at a similar stage had my biopsy and bone scan awaiting my MRI on 28th april, I work a bit different to yourhubby tried to hit this head on, as soon as I arrived home when told the news I contacted all my close family and friends, who after the initial shock have rallied round me, get a bit overwhelmed at times, everyone will find their own way with handling it, my first step was my daughter wanted to know how I felt each morning in the first few days si I kept her informed, this for me wasnt easy as I play my cards close to my chest sometimes.
at the moment have been writing a bit of poetry about what has happened and how I feel, am going to post shortly on this site
take care be strong, the worry is difficult the not knowing seems endless, but the supprt on here is tremendous
run long and prosper
'pooh how do you spell love' 'piglet you dont spell love -you just feel it' |
User
Enjoy your break and make the most of the opportunity to talk on neutral ground as you say.
I think you are going to be fine you worry about those closest to you but seem to have good coping strategies.
I will be thinking of you as you wait for all the tests and formal diagnosis.
I do hope that your daughter can be as level headed as you and will get all the support she needs with her major exams approaching.
Very best wishes
Xx
Mo
User
Hope all goes well for you both.
Today was result day for my hubby who also didn't want to believe it was all happening.
We was told that it is cancer Gleason 3+4 (7)
And mri scan showed it is contained in the prostate. So while it's rubbish news it's the best news at the same time.
One day at a time Worry is a usles emotion and can make a rubbish situation feel much worse.
Positive thinking is the way forward I hope.
Good luck x
User
Hi Maureen,
You may have planned well and prepared well but you may well have not have allowed for Doctor Google? When my ex told me about her diagnosis for Pancreatic Cancer she told me "Don't bother Googling it up, there is nothing good online about it." So the first thing I did was Google it, she was quite right, and I think your kids will be just the same, such is the online world these days.
What ever you tell them now or later, the chances are they will be ahead of you, possibly way way ahead of you? Especially if she is into "microbiology and genetics", what the heck is that anyway?
I told my sons all the facts when I had them. Worked for me, and them. Maybe it would could work for you?
Anyway have a good weekend and I hope all for well with the tests.
dave
All we can do - is do all that we can. So, do all you can to help yourself, then make the best of your time. :-) I am the statistic. |
User
Maureen
Mick and I found it very difficult telling his children, Mark was indifferent as usual but Karen was really taken aback. Google made it so much worse for her so when she called me in floods of tears I asked her to stay away from that and just work through everything with Mick and I.
We involved her in everything and that helped her to cope better. It also helped me so much, although she is my stepdaughter she has always been really close and very much a Daddy's girl.
Dave has a very valid point if your daughter is studying Microbiology and genetics she will almost certainly know how cells become cancerous and develop and if she goes down that same Google route it may be unnecesarily distressing for her.
Never an easy thing so I really wish you well
Xx
Mo
User
Hi Maureen,
We have 2 boys age 19 and nearly 16, the younger one is doing his GCSE's starting 5th May. We got them prepared before we had the Template Biopsy by telling them Dad was having tests and that he was having lots of symptoms etc, we did say that we felt there may be something but had to wait for result. On Thursday when we got results we told them immediately, they are also bright boys and they asked lots of questions but seem to be taking everything in their stride. I think once we made it clear that Dad has a good 20-30 years in him and is not about to die that they felt more at ease about it, with regards to the op my hubby and I have decided that we will wait until after GCSE's as my younger one is quite sensitive and we want to concentrate on his exams as he works so hard at school that we didn't want Dad being in hospital or at home feeling unwell right in the middle of his exams. Your daughter sounds like a level headed girl and I hope she is getting her head around it all, I would say be honest with anything she asks and I hope she does well in her exams too. Not a nice time for any family and I wish you all well.
Love,
Trish
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User
Dear MLJ,
Just want to wish you and your OH luck, my husband had a Template biopsy today results next Thursday so can relate to how you feel. Fingers crossed for a good outcome.
Trish xx
User
Dear MLJ
You are at one of the most difficult points. There is no advice that I can give to help you at this moment, you just have to worry your way through it.
Once you have all the details and results many others on here will be able to help and advise.
I hope the results are favourable.
Alison
User
Thanks Trish
After spending the whole day, 09.00 - 16.10, at Guys I'm just drained!
Just the thought that others, unfortunately, are going through exactly the same thing helps.
I wish you and your OH well too.
M x
"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne |
User
Thanks Alison, I have planned a coffee and a "melt-down" with a friend tomorrow morning prior to going for the MRI!
It won't solve anything but I think I'll feel a lot better.
M
"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne |
User
Dear M,
We were next door at the London Bridge Hospital all day.
Good luck at St Thomas tomorrow.
Trish x
User
I do have a question about the printed Toolkit - does anyone know whether it arrives without any logos on the envelope? I'm only asking as our daughter is revising for her AS exams at the moment and we've just said to her that there's some more tests need doing as a follow up from dad's blood test - she's always home first and picks the post up off of the mat!
Thanks
Edited by member 16 Apr 2015 at 21:53
| Reason: Not specified
"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne |
User
Hi MLJ,
One thing not to worry about is Guys. it's a top hospital with top prostate surgeons and oncologists.
flexi
User
Hi 'M',
Yes it can be a hell of a shock when it seems your man might have PCa. Clearly the possibility is being taken seriously as apart from the high PSA, perhaps his GP did a DRE (Digital Rear Examination) which gave cause for concern and the fact that scans and a biopsy are being done but at present he has not yet been diagnosed with PCa. Unfortunately, it's an anxious time waiting for results and if it is cancer how early it has been found. Easy to say, though difficult to do I know but take some comfort from the fact that if it is PCa and needs treating - not all PCa - calls for immediate treatment, there are increasingly better ways of dealing with it.
Until a full diagnosis is made nobody knows the situation/implications but do let us know results so we can better understand and help support you.
Edited by member 16 Apr 2015 at 22:20
| Reason: Not specified
Barry |
User
Hello MJL and welcome to the site
I did get the Toolkit by post but can't for the life of me remember whether it came in a plain wrapper!!
Reason tells me it does since there maybe many people who do not wish anyone to know initially that they are making enquiries, but that is no guarantee
The only thing I can think of is that you ring and ask one of the nurses who may be able to tell you straight off or perhaps who could find the info for you Tel: 0800 074 8383.
You've made a good start by ordering the toolkit. It can also be read online but the hard copies are handy for constant referral.
Once you have details and if you have any questions please ask away.
We do our best to support each other. We all understand how you feel at this stage since we have either been there ourselves or our partners/fathers have, so we have first hand knowledge of your current bemusement and distress.
Best Wishes
Sandra
We can't control the winds - but we can adjust our sails |
User
Dear all
A much calmer day today, a coffee and a very short sob before work worked wonders. I'd text'd my work colleague last night and got in late enough for him to have told the other 2 staff of our dreadful day - that worked well as it was all out in the open by the time I got in.
Luckily I work within walking distance of St Thomas' so I was able to have lunch with hubby before his MRI appointment, considering he's slightly claustrophobic it went well.
I've spoken to one of the PCUK nurses and ordered the toolkit , which does come in a plain envelope, and had a general chat about the order of things.
Hubby appeared a bit more engaged today so the next step is for me to persuade him to tell his elder brother and suggest he gets a check, their father died of a heart attack so there's no knowing if he had prostate problems.
Thank you all for the helpful suggestions and for being there when I so desperately needed help.
Here's to a brighter weekend
M x
Edited by member 17 Apr 2015 at 16:32
| Reason: Not specified
"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne |
User
Hi M,
As others have said you are at about the worst point in the process, the dreaded 'C' work has been uttered but no detail to back it up yet.
Your imagination will be in overdrive supported with hundreds of 'what ifs'.
Not a nice place to be.
As a guide, I was 56 when I was hit, with a psa around 500.
That as two years ago and my current psa has been at 0.01 for some months now.
So try not to think the worst (as hard as that is) but try and push it to the side until you get the results in.
Easy to say I know, but worrying will not change the results.
You can click on my name to get more of my details.
All the best
Kevin
User
Hi M,
Just wanted to say "hello" and confirm that being a member of this site will make things easier for you, there is so much support here to help you cope with even the most difficult times.
We're all here for you.
Steve
User
HI M
Am at a similar stage had my biopsy and bone scan awaiting my MRI on 28th april, I work a bit different to yourhubby tried to hit this head on, as soon as I arrived home when told the news I contacted all my close family and friends, who after the initial shock have rallied round me, get a bit overwhelmed at times, everyone will find their own way with handling it, my first step was my daughter wanted to know how I felt each morning in the first few days si I kept her informed, this for me wasnt easy as I play my cards close to my chest sometimes.
at the moment have been writing a bit of poetry about what has happened and how I feel, am going to post shortly on this site
take care be strong, the worry is difficult the not knowing seems endless, but the supprt on here is tremendous
run long and prosper
'pooh how do you spell love' 'piglet you dont spell love -you just feel it' |
User
Thanks for all of your encouragement.
Bladerunner, I really wish that my OH would go public I think that it would be easier for him to say "there's something wrong but I'm having tests to find out exactly what"!
He has agreed to tell his brother over the weekend and has now told 2 very good friends, one whose wife has gone through breast cancer and the other has ongoing cardiac problems so I hope that he is slowly coming around to my way of thinking.
What we do disagree on is what our 17 year old daughter is told, she was only 12 when he had his heart attack (and it was touch and go for a few days) so he doesn't want to burden her now especially as she has her AS exams starting next month. I am of the opinion that she will be angry, when she does find out, that she was told "just a few more tests". Not only that she is currently planning to go to university next year to study biology, specialising in genetics / cells leading to a career in research (so she's not daft)!!
I would be grateful for opinions from those of you whose children were at a similar age when you were diagnosed.
M
"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne |
User
Hi M,
My children were in their 30's and early 40's when I was diagnosed so 'telling' them did not present the same dilemma that you are having.
However, I remember well when I was 17 and 'something' was going on with my Gran's health who I was very close to....
It was obvious to me that it was something very serious by the way 'things' were brushed over when I asked any questions...
I can't offer any helpful advice other than to say that 17 year olds are perhaps more aware about things than you may think they are.
Something perhaps for you to consider?
Best Wishes
Luther
User
Hi MLJ,
just to add a bit of humour to this, well sort of.
When I was diagnosed my eldest daughter went to pieces, the youngest one said "well you get things when you're old" !!! She's a police officer and seen a lot so she takes things in her stride.
I don't think I'm that old but when I was at school all the teachers seemed ancient!
As Steve has said you'll get a lot of support here.
Arthur
User
There are ways and ways of telling this sort of news. Even if it is cancer, even if it's advanced and can't be cured, it is not going to kill your husband any time soon. A heart attack is different and more alarming,as you worry that the person could die at any moment, but Pca is not like that. It's not even like some other cancers where by the time it's diagnosed, you may have only weeks to live - no matter how serious it is, treatment for Pca can bring years of almost normal life in most cases.
I'm not playing down the potential seriousness of all this, but when you tell your daughter, you can break it gradually (tests.....diagnosis....more tests....treatments) and assure her that her Dad will still be around to see her off to uni and almost certainly see her graduate. You'll have to choose your moments, but sounds like a bright and capable girl, and if she finds you've been keeping things from her, she'll wonder why and be unsure whether to trust you in future. Young people are ofen more resilient than we expect.
Marje
User
The results of her AS levels will determine what kind of courses and universities she can apply for - we had bad news 2 months before our 3rd daughter's AS levels and it pretty much wrecked her plans even with a letter from the school accompanying her UCAS statement. Only you can judge how much your daughter may have picked up already and therefore whether this will already be playing on her mind, but personally I wouldn't do anything without talking to the Head of 6th form.
Hopefully, the next couple of weeks will result in your OH being told it is still early stage and very treatable, in which case it will be a much easier conversation to have. Bombshells are not good for the revision timetable!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Thanks for the advice and suggestions.
I've now spoken with my daughter's head of 6th form, who also teaches her as well, I explained our differing opinions but stressed that it was the AS level situation that we were worried about. She said that our daughter is very level headed and focussed so she hopes that exams would not be affected whatever the outcome.The head said that she would hate to think that our daughter was diagnosing my husband via Google. She agreed that we should explain that as men get older prostate problems are very common but until all of the test results are in we are non the wiser what the problem exactly is. I agreed that daughter's form tutor could be told and was advised that both teachers would look out for any "wobbles", mind you she starts study leave on 1st May.
We are away this weekend on a break, planned ages ago, so I think that this would be a good opportunity to clear the air on neutral territory - fingers crossed!
Hubby has finally started to talk about his hospital visit and has advised his brother to go for a psa test - he's 60 and has never had one. The initial shock is now starting to wear off, routine has been restored (going to work - a relief, who'd thought that) and nothing more to do until the biopsy on the 27th.
I'm so glad I found this community, thanks again x
"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne |
User
Enjoy your break and make the most of the opportunity to talk on neutral ground as you say.
I think you are going to be fine you worry about those closest to you but seem to have good coping strategies.
I will be thinking of you as you wait for all the tests and formal diagnosis.
I do hope that your daughter can be as level headed as you and will get all the support she needs with her major exams approaching.
Very best wishes
Xx
Mo
User
Hope all goes well for you both.
Today was result day for my hubby who also didn't want to believe it was all happening.
We was told that it is cancer Gleason 3+4 (7)
And mri scan showed it is contained in the prostate. So while it's rubbish news it's the best news at the same time.
One day at a time Worry is a usles emotion and can make a rubbish situation feel much worse.
Positive thinking is the way forward I hope.
Good luck x
User
Totally agree. When I got my diagnosos, (you can see my profile), it was just a case of dealing with it. I had da Vinci surgery. i just wanted rid of it asap. Make sure you explore all options and do what is right for you.
Paul
Stay Calm And Carry On. |
User
Hi M,
I think the beginning of a cancer journey is the worst, awaiting answers to all the unknowns is very difficult and affects all of us differently.
My husband similarly didn't want anybody to know about his investigations and cancer diagnosis initially. I personally found this extremely stressful as I felt I couldn't access the support I needed from friends and family. I did in fact let my work colleges know and they became my support. My husband did eventually open up to others when he had got his own head round his diagnosis and on a plan of treatment.
My kids were 12, 16, and 18 when Bob was diagnosed and we agreed they should be told everything from the start but were requested not to discuss with others( I think each of them may have chatted to a close friend). My 16 and 18 year old were both at 6th form, dealt very maturely with all info, and have done very well with there achievements. My 12 year old struggled more,perhaps she had added proB's of pubity. We told her all the facts but in a more simplified manner and answered any questions she asked honestly but I don't think she really understood the implications of what we told her. She's 16 now and doing ok and on an even keel (if 16yr old can be on an even keel!!Ha ha)
I dont think there's a right or wrong way of dealing with cancer worries, all our cancer situations are different,all our kids are different and however you deal with your situation will be right for you.
Hope all goes well for you, enjoy your break.
Lesley xx
User
Well we all know that no matter how much planning we do things will always throw a spanner in the works!
Having mentally prepared myself to have a chat with my daughter about Steve's tests during our weekend away I ended up having the conversation last night as an ideal opportunity presented itself as she asked if Monday (it's biopsy day) was for more tests. I said yes, explained that it was common for men as they get older to have these problems but until the hospital get all of the results they can't tell us the outcome or prescribe treatment. She seemed ok, I didn't lie, but at least it's broken the ice if there is bad news to follow later.
I'm glad that's over, daughter is attending a microbiology and genetics lecture at Cambridge uni while Steve and myself are having a wander around the town enjoying the sunshine, unfortunately a lot of the colleges are closed for exams or graduation ceremonies.
It's cleared the air, she probably has her suspicions but there'll obviously be another conversation to be had in a few weeks.
Thanks for all of your advice and support, have a good weekend.
Maureen x
"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne |
User
Hi Maureen,
You may have planned well and prepared well but you may well have not have allowed for Doctor Google? When my ex told me about her diagnosis for Pancreatic Cancer she told me "Don't bother Googling it up, there is nothing good online about it." So the first thing I did was Google it, she was quite right, and I think your kids will be just the same, such is the online world these days.
What ever you tell them now or later, the chances are they will be ahead of you, possibly way way ahead of you? Especially if she is into "microbiology and genetics", what the heck is that anyway?
I told my sons all the facts when I had them. Worked for me, and them. Maybe it would could work for you?
Anyway have a good weekend and I hope all for well with the tests.
dave
All we can do - is do all that we can. So, do all you can to help yourself, then make the best of your time. :-) I am the statistic. |
User
Maureen
Mick and I found it very difficult telling his children, Mark was indifferent as usual but Karen was really taken aback. Google made it so much worse for her so when she called me in floods of tears I asked her to stay away from that and just work through everything with Mick and I.
We involved her in everything and that helped her to cope better. It also helped me so much, although she is my stepdaughter she has always been really close and very much a Daddy's girl.
Dave has a very valid point if your daughter is studying Microbiology and genetics she will almost certainly know how cells become cancerous and develop and if she goes down that same Google route it may be unnecesarily distressing for her.
Never an easy thing so I really wish you well
Xx
Mo
User
Hi Maureen,
We have 2 boys age 19 and nearly 16, the younger one is doing his GCSE's starting 5th May. We got them prepared before we had the Template Biopsy by telling them Dad was having tests and that he was having lots of symptoms etc, we did say that we felt there may be something but had to wait for result. On Thursday when we got results we told them immediately, they are also bright boys and they asked lots of questions but seem to be taking everything in their stride. I think once we made it clear that Dad has a good 20-30 years in him and is not about to die that they felt more at ease about it, with regards to the op my hubby and I have decided that we will wait until after GCSE's as my younger one is quite sensitive and we want to concentrate on his exams as he works so hard at school that we didn't want Dad being in hospital or at home feeling unwell right in the middle of his exams. Your daughter sounds like a level headed girl and I hope she is getting her head around it all, I would say be honest with anything she asks and I hope she does well in her exams too. Not a nice time for any family and I wish you all well.
Love,
Trish