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Another Newbie ... wife ...

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User
Posted 23 May 2015 at 09:59

Hi

My brother of 54 told us four weeks or so ago that he'd been diagnosed with prostate cancer ... he goes for removal of his prostate in two weeks.  We told him that my husband (61) was also going through tests ... and yesterday we received the horrible news that he also has prostate cancer.  And right now, I am struggling!

Unfortunately my husband only spoke with our doctor on the phone and he is in the unenviable situation of never asking the right questions, bless him!  (You know the one "Oh, Jane has had the baby" "oh, what is it?  How much did it weigh?  Are they both ok?" ... I'm told that all you fellas never ask the questions us women want the answers to!!)

He was just told it was bad news, and yes, he had prostate cancer, and he would soon be invited to see the consultant. 

He openly admits that its only because "the other person in our house wants to know" that he rang at all.

So last night I spent the early ... and late ... hours attached to Prostate Cancer UK ... trying to second guess what his symptoms mean.  The reason he went to the doctor was cos he was feeling as if he'd been "run over", his "bones ache", he's "lost all my strength".  Nothing to do with trouble with his water works!  My brain is in over drive!!  And I know I have to allow him to deal with this in his way ... it's his journey ... I'm just along for the ride.  But I don't want to go on this journey.  I want to turn the clock back 24 hours ... or longer.

I don't know why I am writing this.  I know no one can give me any answers.  I just want to be the strong person I normally am.  I need to be strong for him.  But right now I am struggling!

 

User
Posted 23 May 2015 at 14:09
Hi

It's bad enough with one family member going through this process but two must be dreadful. The first thing you need to do, if you haven't already done it, is to order the toolkit from PCUK, you can also call the Prostate UK specialist nurses who have all the time in the world to speak to you and answer your questions.

Just to give you an idea of the tests / processes involved my husband went through please click on my profile, click MLJ above.

I, like you, was in a state of shock but found the advice and guidance given on this forum excellent and it kept me sane during the wait for results and treatment plan - this is the worse part honestly.

There are numerous wives on this forum, please don't ever think that you are on your own.

With all best wishes

Maureen x

Edited by member 23 May 2015 at 14:10  | Reason: Not specified

"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne
User
Posted 23 May 2015 at 15:20

Hello Cayzdan and welcome.

If you'd turned back the clock you would only be facing all of this again so look forward, not back.

As Maureen says there are a number of wives and partners here on the site.
Like you, we all want the "right" questions asked and we want to know the full story, not what our other halves think to tell us.
It's not through malice on their part. It's either to protect us, they don't remember the answers given to them, or they bury their heads in the sand and wait for it all to go away.

We, as wives, take a different view. We want to get to grips with what is to come, we want to be there for them and we want to make them better.

The mere fact that you have taken the trouble to research PCa is a good start, and to join us on here too. I had to do the same for my husband.
a) he isn't particularly computer literate and b) he'd rather not think about it.

Maureen is correct about the Toolkit. It is a wealth of information, available free from this site. Go back to home page, Prostate Information then Our publications. They are a combination of booklets and leaflets, designed to tell you all about symptoms, treatments, Erectile Dysfunction, Emotions etc. Well worth having.
They will enable you both to sit down with a pad and pencil and write your list of questions for when you get to see a consultant. Pad and pencil are handy to have with you in any case since you will never remember all that is said to you.

I assume, since you got the result from the GP, that your husband had a PSA test done.
He must have had a biopsy too since as far as I'm aware Prostate cancer isn't diagnosed from a blood test alone.
Raised PSA could be for a number of reasons, infection, Benign prostate disease, sexual intercourse just before the test, even riding a bike just before the test to name just a few reasons for it.

Do you know your husband's PSA, and his Gleason scores? They help when people are advising

The fact that your brother has just been diagnosed means that you will be aware of some aspects of the disease. Horrible as it is for both your husband and brother, they at least can share their experiences on this journey. Your brother may find joining here helpful.

You are right that this is your husband's journey but you are in the same carriage with him and will be there supporting him every step of the way as all us wives do.

Ask any question you want. None of them will be regarded as stupid, or irrelevant. Every thought that is running through your mind has/is running through ours too. All of us, to a degree have been there, some of us have even got T.shirts too.

Maureen says you are never alone on this site. Well you're not. We help each other, we support each other.
We'll support you and your other half too - it's what we are good at.

Keep posting, keep asking.
Best Wishes
Sandra

 

Edited by member 23 May 2015 at 15:56  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 23 May 2015 at 21:36

Hi Cayzdan,

I just wanted to say welcome ( I know that is a pretty strange thing to say on a Cancer forum)  I can remember those early days of diagnosis and panik that you are feeling so well, it does get better I promise as soon as you get results and understand exactly what you are dealing with things just slot into place in your head. The most important thing to remember is this is such a varied disease and until you get all of the reports in you won't know the full diagnosis.

My OH never posts and also is a bit of an ostrich but hey ho we all have different ways of dealing with things, I on the other hand have had tremendous support from the forum and couldn't have got through the last 2 years without it and the people n here.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 24 May 2015 at 23:19
Hi Kim,

I just wanted to wish you, your husband and brother "Good Luck" with the difficulties you all face in the coming months.

We're all here to support you.

Steve

User
Posted 25 May 2015 at 19:52
I know exactly how you're feeling, my OH has no PSA history so he's only got the result he was referred on (19.7), but similar to your OH as He's T3, 4+3 and fortunately the bone scan showed no spread.

He made his choice of treatment last week and it was a massive relief to now have a treatment plan sorted, he's opted for HT / EBRT / brachytherapy. Review all your options, my OH had virtually made his mind up for surgery until he met with the oncologist to hear about non surgical options.

Good luck with your next appointment.

Maureen x

"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne
User
Posted 25 May 2015 at 20:47

Thanks, Maureen. I have to tell you that coming back home from the hospital this afternoon, having received the results so far, having felt so bad over the weekend, it was the A A Milne saying that you have at the bottom of your posts that kept coming to mind. Thank you for that ... it gave me strength!!

Just had a quick read of your bio ... I had read it before, but didn't understand much at the time. Now I understand a little more. Will have to look at that treatment plan, too.

My brother, T2 and also 4/3, and 54 is having his prostate removed next week. Hubby rang him today, singing "Anything you can do, I can do better ... " ... a gsoh seems to be the order of the day in our house ... thankfully!!! I just hope that can stay.

I will follow your posts with interest.

Take care ... and good luck to the both of you, too

Kim x

User
Posted 25 May 2015 at 21:57
Hi Kim

Welcome to the forum, I'm another wife and my hubby was 61 at diagnosis, I do remember all the waiting as the story unfolded, PSA test, DRE, Biospy, results, scans, results etc, it did take some time before we knew all the relevant information and although in our case, it was not good news, we had spread and a G10 I just wanted to say that four and a half years on we are still doing ok. It's an odd disease and you can't extrapolate from another person's history as to how things might go for you but at least you can get a view of what happened to others (on this site).

We often say we can't remember the waiting now, I guess we get used to it, we all live from appointment to appointment, but hopefully enjoy life in the intervals.

Please let us know what happens next, I have my fingers crossed for you both.

Love

Allison xx

User
Posted 26 May 2015 at 06:30

Good morning Kim,
Sorry the news wasn't better for you both but how brilliant that you have such a caring consultant.

The waiting is often the hardest part, your mind is in overdrive and no plans can be made.

Whatever treatment your husband chooses he would do well to start practising pelvic floor exercises to helpo with continence issues, as indeed would your brother.

Strange as it seems to say, but it is good that your husband has somebody close to him to know exactly where he is on this journey.

Good luck to both of the men and to you. You'll be there too, egging them both on to get the exercises done I bet !!

Best Wishes
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 26 May 2015 at 20:56

Allison, thank you ... however I am sorry you and yours have had to go through so much, but the fact that 4 years on you are still enjoying this new stage of your life ... all credit to you both ... and thank you for sharing your story ... you and others show there is hope, even when you think there is none.

I hope I have the strength of character you so clearly show

Love and best wishes

xx

Show Most Thanked Posts
User
Posted 23 May 2015 at 14:09
Hi

It's bad enough with one family member going through this process but two must be dreadful. The first thing you need to do, if you haven't already done it, is to order the toolkit from PCUK, you can also call the Prostate UK specialist nurses who have all the time in the world to speak to you and answer your questions.

Just to give you an idea of the tests / processes involved my husband went through please click on my profile, click MLJ above.

I, like you, was in a state of shock but found the advice and guidance given on this forum excellent and it kept me sane during the wait for results and treatment plan - this is the worse part honestly.

There are numerous wives on this forum, please don't ever think that you are on your own.

With all best wishes

Maureen x

Edited by member 23 May 2015 at 14:10  | Reason: Not specified

"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne
User
Posted 23 May 2015 at 15:20

Hello Cayzdan and welcome.

If you'd turned back the clock you would only be facing all of this again so look forward, not back.

As Maureen says there are a number of wives and partners here on the site.
Like you, we all want the "right" questions asked and we want to know the full story, not what our other halves think to tell us.
It's not through malice on their part. It's either to protect us, they don't remember the answers given to them, or they bury their heads in the sand and wait for it all to go away.

We, as wives, take a different view. We want to get to grips with what is to come, we want to be there for them and we want to make them better.

The mere fact that you have taken the trouble to research PCa is a good start, and to join us on here too. I had to do the same for my husband.
a) he isn't particularly computer literate and b) he'd rather not think about it.

Maureen is correct about the Toolkit. It is a wealth of information, available free from this site. Go back to home page, Prostate Information then Our publications. They are a combination of booklets and leaflets, designed to tell you all about symptoms, treatments, Erectile Dysfunction, Emotions etc. Well worth having.
They will enable you both to sit down with a pad and pencil and write your list of questions for when you get to see a consultant. Pad and pencil are handy to have with you in any case since you will never remember all that is said to you.

I assume, since you got the result from the GP, that your husband had a PSA test done.
He must have had a biopsy too since as far as I'm aware Prostate cancer isn't diagnosed from a blood test alone.
Raised PSA could be for a number of reasons, infection, Benign prostate disease, sexual intercourse just before the test, even riding a bike just before the test to name just a few reasons for it.

Do you know your husband's PSA, and his Gleason scores? They help when people are advising

The fact that your brother has just been diagnosed means that you will be aware of some aspects of the disease. Horrible as it is for both your husband and brother, they at least can share their experiences on this journey. Your brother may find joining here helpful.

You are right that this is your husband's journey but you are in the same carriage with him and will be there supporting him every step of the way as all us wives do.

Ask any question you want. None of them will be regarded as stupid, or irrelevant. Every thought that is running through your mind has/is running through ours too. All of us, to a degree have been there, some of us have even got T.shirts too.

Maureen says you are never alone on this site. Well you're not. We help each other, we support each other.
We'll support you and your other half too - it's what we are good at.

Keep posting, keep asking.
Best Wishes
Sandra

 

Edited by member 23 May 2015 at 15:56  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 23 May 2015 at 21:17

Maureen and Sandra ... thank you!!

I do know that his PSA was/is 10.5 ... and 14 biopsies were taken a week yesterday. With regards to any results from the biopsies ... no. When his doctor spoke last night to him, she just said she wasn't an oncologist so all she could say was that it was not good news, and he did have prostate cancer. I would have liked to have sat in the waiting room at the docs first thing this morning and stayed there until we were told exactly what info they had. But that isn't what "him indoors" wanted. He just wants to wait until we see the consultant ... when we get an appointment.

My brother is very much like me ... needs to know the ins and outs of everything. My husband, however, is quite happy to wait until he is told whatever. Since doing my research on here, I know a little more ... I know that our GP surgery could well have had the Gleason score etc. The urologist could well have felt something when doing the DRE. We know very little. And my husband even less.

Today he has been on a "mission" ... he has had a list of jobs he wanted to do ... and he has worked his butt off. And knowing him, he will keep "mishing" (as he calls it), no matter how tired he is, or how much he aches. Keeping busy gives him no time to think.

Thank you for your support ... it is much appreciated.

Kim

User
Posted 23 May 2015 at 21:36

Hi Cayzdan,

I just wanted to say welcome ( I know that is a pretty strange thing to say on a Cancer forum)  I can remember those early days of diagnosis and panik that you are feeling so well, it does get better I promise as soon as you get results and understand exactly what you are dealing with things just slot into place in your head. The most important thing to remember is this is such a varied disease and until you get all of the reports in you won't know the full diagnosis.

My OH never posts and also is a bit of an ostrich but hey ho we all have different ways of dealing with things, I on the other hand have had tremendous support from the forum and couldn't have got through the last 2 years without it and the people n here.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 24 May 2015 at 11:29

Hello KIm,

I know these are troubled times but I think it is better to wait until you and your husband have seen the consultant (or one of the mutli-disciplinary team) who will be able to explain the findings of the biopsy, put everything into context and go through the various treatment plans.  Time is on your side.

Knowing your brother also has been diagnosed and is a little further forward in his journey (and understanding of "this thing"), would I have thought be a really good informal sounding board for your husband when he gets over the shock of being diagnosed and takes up the fight.

Flexi

User
Posted 24 May 2015 at 12:37
Hi Cayman,I know it's hard getting ur head round family members who got cancer?if it's caught early it's good survival rate?I was told early January I've positive for cancer and senior consultants at UCL Barts under professor Kelly team assured me my cancer was confined in t prostate and it weren't break through my prostate and I was given a date which I had to wait ten weeks and now I've had my operation and had my phalogical report there said my cancer had broken through my prostate so now aim faced with radiotherapy treatment no happy being let down my senior consultants playing a guessing game with my life so make sure y get all the ansears y need to know about ur loved ones cancer Ray
User
Posted 24 May 2015 at 15:33

Nuray, it is against the rules of the forum to name the consultant or any of your medical team so it would be best if you could edit your post or ask the moderators to do it for you. Also, I am sure it will have been explained to you at some point that the medics can never be absolutely sure of the extent of the cancer until they get the gland cut out and sent to a laboratory ... one of the reasons that many men choose surgery over RT

Edited by member 24 May 2015 at 15:36  | Reason: Not specified

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

User
Posted 24 May 2015 at 15:41

Cayzdan, in a way I think it is unfortunate that your OH phoned up as many GPs would have decided not to give that information over the phone and to leave it for the hospital appointment - usually, there are specialist nurses on hand at the consultation to provide tea, leaflets, answer questions, etc. Your GP probably doesn't have the skills or knowledge to provide what you want right now.

The appointment will come round soon enough - if you want to use the time wisely, read the toolkit and start a list of questions to ask.

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

User
Posted 24 May 2015 at 23:00
Thank you, guys, for your support. I am trying to use this time wisely by reading up on this site, while my OH is constantly on the go, no matter how tired or achey he is. My brother had spoken well of this site, and he was guided here when he was diagnosed. I fully appreciate its not always best to take notice of all you read on Google ,,, or any other search engines. Trust me, I am no longer going to be put off from being with him at appointments ... Whether he likes it or not!!! ☺️

it's been a little easier today, with the shock sinking in ... But now if he moans when he is bending down ... Or coughs a bit ... My brain is going into overdrive. the sooner we have a referral for the results, the better!

thanks again, and hope you all have a good Bank Holiday Monday

Kim x

User
Posted 24 May 2015 at 23:19
Hi Kim,

I just wanted to wish you, your husband and brother "Good Luck" with the difficulties you all face in the coming months.

We're all here to support you.

Steve

User
Posted 25 May 2015 at 07:16

Hi Kim it is very hard going through what you are. I agree it may have been best if your GP had waited for the specialist because any advice re treatment will come from there. Waiting in the early stages for appointments and results is very stressful.. I rang a couple of times and managed to bring some of these forward but times do not really make that much difference at the end of the day. Now my husband has had his Radical Prostatectomy I don't want the time for reviews to come at all. I am now a bit like the ostrich in the sand. My best wishes to you both in this journey none of us would choose to travel. Georgina from Australia

User
Posted 25 May 2015 at 10:01

Also, welcome to the forum from me. You have got some good responses. We all say the waiting is horrible but good to get as informed as you can. Let us know when you get the results, you will have lots of support here !

 

Fiona.

User
Posted 25 May 2015 at 13:30
Nuray,

Sorry to hear your results were not all you expected. I am returning for my follow up histology results in 3 weeks. At no time did my surgeon indicate to me that the operation would definately remove all the cancer. I was told that the scans could only give an estimation of what was happening with regard to spread and the only way that the full situation about margins could be defined was after the prostate was removed. All the literature I read before making my decision backex this up. At least you know what your next hurdle is. I wish you well.

Paul

Edited by member 25 May 2015 at 21:00  | Reason: Not specified

THE CHILD HAS GROWN, THE DREAM HAS GONE
User
Posted 25 May 2015 at 18:10

Hi Kim,

I know exactly how you must be feeling as my husband was diagnosed at the beginning of last year Jan 2014. He opted to have the prostate removed robotically in March of last year. I think the waiting for test results etc in some ways is the worst part, especially for us wives/partners.

Hopefully when your husband gets to see his consultant, you'll have a better idea of exactly what's going on and what you're choices are re treatment.

There's lots of information on this site and lots of support from people who are going through exactly the same things as you right now.

Best Wishes

Jane

User
Posted 25 May 2015 at 19:22

At 11 this morning ... Bank Holiday Monday ... my husbands consultant rang ... we were at the hospital two hours later!

Apparently, as his PSA had doubled from 5 to 10 in 6 months, and 12 out of the 14 biopsies taken were cancerous, my OH has a fairly aggressive cancer.  His Gleason score is 4/3, although it will probably act more like a 4/4 (????).  He has to have a bone scan and a CT scan, and then if the results of those are negative, then he has the option of either an operation or radiotherapy.

He already would prefer the operation, even knowing about the possibility of ED and incontinence ... and to be perfectly honest, as long as I have my wonderful husband, I don't care either!!!

I have to say that for some strange reason, I actually feel ok now.  I know that we still don't know what is going to happen ... and we don't know what the future holds ... but I just feel the results could have been worse ... or maybe, they just weren't as bad as I expected!

I'm not normally a pessimistic person ... I normally am very positive ... but before today's meeting I really did expect the worst.  Now I feel as if we can handle this, and all will be ok.

I can't thank the consultant enough for seeing us so soon ... and to phone us on a Bank holiday because he was on call ... superb.

I also really appreciate the fact that this community ... these new friends ... you ... have been so supportive and understanding when I needed to know that others were out there.

When you first hear that dreaded word CANCER ... and let's face it ... it's never gonna happen to us ... your world falls apart.  I know my husband didn't want to tell anyone apart from the kids because he wanted to wait until he knew more ... that meant I felt I had no one to turn to.  I was wrong.  Thank you x

 

User
Posted 25 May 2015 at 19:52
I know exactly how you're feeling, my OH has no PSA history so he's only got the result he was referred on (19.7), but similar to your OH as He's T3, 4+3 and fortunately the bone scan showed no spread.

He made his choice of treatment last week and it was a massive relief to now have a treatment plan sorted, he's opted for HT / EBRT / brachytherapy. Review all your options, my OH had virtually made his mind up for surgery until he met with the oncologist to hear about non surgical options.

Good luck with your next appointment.

Maureen x

"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne
User
Posted 25 May 2015 at 20:47

Thanks, Maureen. I have to tell you that coming back home from the hospital this afternoon, having received the results so far, having felt so bad over the weekend, it was the A A Milne saying that you have at the bottom of your posts that kept coming to mind. Thank you for that ... it gave me strength!!

Just had a quick read of your bio ... I had read it before, but didn't understand much at the time. Now I understand a little more. Will have to look at that treatment plan, too.

My brother, T2 and also 4/3, and 54 is having his prostate removed next week. Hubby rang him today, singing "Anything you can do, I can do better ... " ... a gsoh seems to be the order of the day in our house ... thankfully!!! I just hope that can stay.

I will follow your posts with interest.

Take care ... and good luck to the both of you, too

Kim x

User
Posted 25 May 2015 at 21:57
Hi Kim

Welcome to the forum, I'm another wife and my hubby was 61 at diagnosis, I do remember all the waiting as the story unfolded, PSA test, DRE, Biospy, results, scans, results etc, it did take some time before we knew all the relevant information and although in our case, it was not good news, we had spread and a G10 I just wanted to say that four and a half years on we are still doing ok. It's an odd disease and you can't extrapolate from another person's history as to how things might go for you but at least you can get a view of what happened to others (on this site).

We often say we can't remember the waiting now, I guess we get used to it, we all live from appointment to appointment, but hopefully enjoy life in the intervals.

Please let us know what happens next, I have my fingers crossed for you both.

Love

Allison xx

User
Posted 26 May 2015 at 06:30

Good morning Kim,
Sorry the news wasn't better for you both but how brilliant that you have such a caring consultant.

The waiting is often the hardest part, your mind is in overdrive and no plans can be made.

Whatever treatment your husband chooses he would do well to start practising pelvic floor exercises to helpo with continence issues, as indeed would your brother.

Strange as it seems to say, but it is good that your husband has somebody close to him to know exactly where he is on this journey.

Good luck to both of the men and to you. You'll be there too, egging them both on to get the exercises done I bet !!

Best Wishes
Sandra

We can't control the winds - but we can adjust our sails
 
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