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my husband is 43.and has just been diagnosed with prostate cancer

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User
Posted 06 Sep 2015 at 09:59
My name is lily I am 44 my husband is 43 and was diagnosed with prostate cancer 2 days ago, we have three children ages 20,18 and 13. My husband left us a week ago and we are separating but this news was a huge shock'. My husband has been unwell for about a year our marriage has been on the decline for about 18 months, I feel him being unwell in the past year and me nagging about going to the doctors contributed to him having enough of our relationship. He has had lower stomach pain for 12 months that has progressively got worse and has been severe in last 6 months. He has over last 3 months had a worsening of breathlessness and chest pain with terrible fatigue and in last two weeks has coughed up small amounts of blood- he in last month has also complained of very uncomfortable leg pain which literally made it uncomfortable for him to just sit to watch TV and also difficult to sleep. He hasn't been able to urinate properly since January this year sometimes not being able to go at all and sometimes little amounts coming out and leaving him with a full bladder and pain. His stomach over past few weeks has become very large rounded and looks bloated.

In January I forced him to go to docs and he then went on to see a consultant had PSA test said low results had rectal examination doc said normal had ct scan they said kidney stone and treated it with medication and also ordered appt and chest xray to look into breathlessness. After chest xray and test for asthma results said there was abnormalities so the gave him blue puffer for when he gets breathless. I would like to add that on both occasions seeing prostate consultant he started discussing my husbands results and treatment with wrong file calling my husband by the wrong name. Meds for kidney stone had no effect on curing the pain and not being able to wee so I pushed for follow up appt another scan was done and consultant said he could see something in the bladder but thought probably a calcium spot and just told husband to carry on with treatment. Treatment never worked and neither did the blue puffer for breathlessness. So this has been the situation for around 9 months. Then my husband leaves us and a week later gets the diagnosis but doesn't want me to go to spots or anything I just want advice/ experiences and thoughts from people on here and what I/he should expect. He is going to an appt next week to discuss staging/aggressiveness/treatment etc would really appreciate some advice or info thank you' lily x

Edited by member 08 Sep 2015 at 12:44  | Reason: Not specified

User
Posted 06 Sep 2015 at 19:22

Hi Lily

What sad circumstances.  Your husband has been suffering for a long time and this may at least be a contributory factor to his attitude.  Your husband is typical of many males who are reluctant to go to their GP's with problems and it is often the partners who push these men for diagnosis and possible treatment.  You will notice on this forum that is very frequently ladies who respond and help or if this is not possible at least lend a sympathetic shoulder.

What you need to establish is whether your husband wishes you to help him, if not directly by attending appointments, indirectly through this sort of forum or otherwise whether he will join us or research treatment options open to him.  The options will no doubt be discussed with his consultant when all the tests and scans enable a full diagnosis.

Your husband seems to have been very unfortunate in not having his problems diagnosed and addressed.  Again men are often reluctant to keep going back to the medics and pushing for answers which sometimes becomes necessary.

I very much hope that his PCa is at an early stage and curable and that his other medical problems will be resolved.

Finally, I commend you for what you are doing and hope that all this may lead to a reconciliation between you both, if that is what you both want.

 

Edited by member 07 Sep 2015 at 03:06  | Reason: Not specified

Barry
User
Posted 06 Sep 2015 at 12:49

Hi Lily,

I'm sorry you and your husband find yourselves here.

This understandably is of course a worrying time because of the uncertainty. Things will become clearer though once the oncologist has reviewed your husband's PSA result against any other tests that might have been carried out e.g. a biopsy or MRI scan (they may schedule such tests next week if they haven't been carried out). With a "low PSA" there are likely to be a range of treatment options available.

In the meantime I would recommend you download / order the prostate toolkit on this website which provides a lot of support information, both to the person who has been diagnosed and to the family:

http://prostatecanceruk.org/prostate-information/our-publications/publications/tool-kit

Flexi

 

 

 

 

User
Posted 06 Sep 2015 at 16:58

Hi Lily,

So sorry that you find yourself on here but you are definately the right place for advice or even if you feel you need to vent! We are around the same age as I am also 44 and my husband is 46 we have 2 boys age 19 and 16 . I hope your husband will be able to open up to you about his diagnosis/treatment as I have learned that the ladies on here are the ones who push the men as you have done to get info like the toolkit and as questions. If he does let you go to appointments with him take a notebook and pen and also have some questions already prepared as sometimes shock/nerves take over and you are not taking it all in properly.

If you need anything or have any questions please feel free to ask, the people on here with more experience than me are great!

Trish x

User
Posted 06 Sep 2015 at 17:39

Hello Lily

The others have said it really but just wanted to welcome you and say that whatever the results are neither you nor your husband are alone any longer.

For him to feel so ill, for so long and then to be given, well almost palliative treatment it seems, rather than the experts finding out what the matter really is, will have gone a long way towards the situation you find yourselves in with the "nagging" and then the separation.

You obviously still feel a lot for him since you are trying your best to help.

All I can say is hang in there and don't give up on him or your marriage.

This horrible disease can put a strain on even the most stable of relationships and if you have been going through a bad patch then all this uncertainty will not have helped.

Ask away any questions you might have.

Does your husband know you have joined us on his behalf. If he does then maybe you could find out what he wants to know. This disease produces a terrible fear in all of us when we are first diagnosed.

The worst possible thoughts go through our minds but until you have all the facts and a "proper" diagnosis it wastes our energy worrying over what might be.

It's a pity he doesn't want you to go with him, but understandable. Perhaps he doesn't want to lay that "burden" on you, could that, in fact, explain why things have gone wrong? He's feared the worst because of how ill he feels but didn't want to worry you?

It must have been pretty grim for him to feel as bad as he has and not to get a proper diagnosis to account for it.

As for the consultant to start talking to him with the wrong file in front of him, that's outrageous. Bad enough when it's your own file, when at least the conversation is based on you and what your problems are!

If he won't let you go with him, would he let somebody else. A brother or friend perhaps. Or even your oldest child. It's just that even with pen and paper for answers we don't take it all in. With all that has happened to him over the last 18 months there will be a lot of discussion, or at least there should be.

Anyway, you've found us for the future and we are very good at the supporting shoulder to lean on, so use us.

All the best
Sandra

Edited by member 06 Sep 2015 at 17:43  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 06 Sep 2015 at 20:48
Hi Lily

The link to the publications is above, if your husband doesn't want you to go with him the publications have good check sheets to use at appointments for asking questions and jotting down answers.

Maureen

"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne
User
Posted 07 Sep 2015 at 07:19

Hi

have a chat with the specialist nurses on 0800 074 8383, not just for men to talk to, will he let any of your children go with him.

nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 08 Sep 2015 at 13:07

Well Lily, you know yourself and your husband best and if you say there is no way back then you must know, you're the one that's lived/ is living with all this.

Given that you had to have the courage to face the separation, and given that you say the marriage had become toxic, then I salute you for hanging onto the memory of 22 years and three children and trying to do your best for him.

Well done you.

Keep posting if it helps you. You know we are all here to help if you need us.

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 08 Sep 2015 at 17:40
Hi Lily

A PSA score of 2 is pretty low but not unheard of, has your OH had a biopsy or MRI or DRE to confirm the diagnosis? as PSA alone is not sufficient to make a proper diagnosis, where you present when the diagnosis was given?

Take care

Roy

User
Posted 08 Sep 2015 at 20:51

No Roy - she has explained above that they are separated and he isn't giving her much information.

Tbh Lily, in the circumstances i don't think there is much you can do and so worrying and trying to read up on it all is a bit pointless - all you will achieve is to have info overload and loads of things that you can only imagine or guess at. If reality sets in and your husband wants support, he may turn to you as the mother of his children or perhaps that will be too difficult and he will turn instead to family or friends. Undoubtedly, the side effects of treatment are such that most men would not want their ex to know the details - it can be embarrassing and humiliating for men with a supportive partner so unimaginably embarrassing with an ex. Having said that, we have had women here in the past that have cared for ex-partners at the end-of-life stage but hopefully your OH is in the curable camp.

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

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User
Posted 06 Sep 2015 at 12:49

Hi Lily,

I'm sorry you and your husband find yourselves here.

This understandably is of course a worrying time because of the uncertainty. Things will become clearer though once the oncologist has reviewed your husband's PSA result against any other tests that might have been carried out e.g. a biopsy or MRI scan (they may schedule such tests next week if they haven't been carried out). With a "low PSA" there are likely to be a range of treatment options available.

In the meantime I would recommend you download / order the prostate toolkit on this website which provides a lot of support information, both to the person who has been diagnosed and to the family:

http://prostatecanceruk.org/prostate-information/our-publications/publications/tool-kit

Flexi

 

 

 

 

User
Posted 06 Sep 2015 at 16:58

Hi Lily,

So sorry that you find yourself on here but you are definately the right place for advice or even if you feel you need to vent! We are around the same age as I am also 44 and my husband is 46 we have 2 boys age 19 and 16 . I hope your husband will be able to open up to you about his diagnosis/treatment as I have learned that the ladies on here are the ones who push the men as you have done to get info like the toolkit and as questions. If he does let you go to appointments with him take a notebook and pen and also have some questions already prepared as sometimes shock/nerves take over and you are not taking it all in properly.

If you need anything or have any questions please feel free to ask, the people on here with more experience than me are great!

Trish x

User
Posted 06 Sep 2015 at 17:39

Hello Lily

The others have said it really but just wanted to welcome you and say that whatever the results are neither you nor your husband are alone any longer.

For him to feel so ill, for so long and then to be given, well almost palliative treatment it seems, rather than the experts finding out what the matter really is, will have gone a long way towards the situation you find yourselves in with the "nagging" and then the separation.

You obviously still feel a lot for him since you are trying your best to help.

All I can say is hang in there and don't give up on him or your marriage.

This horrible disease can put a strain on even the most stable of relationships and if you have been going through a bad patch then all this uncertainty will not have helped.

Ask away any questions you might have.

Does your husband know you have joined us on his behalf. If he does then maybe you could find out what he wants to know. This disease produces a terrible fear in all of us when we are first diagnosed.

The worst possible thoughts go through our minds but until you have all the facts and a "proper" diagnosis it wastes our energy worrying over what might be.

It's a pity he doesn't want you to go with him, but understandable. Perhaps he doesn't want to lay that "burden" on you, could that, in fact, explain why things have gone wrong? He's feared the worst because of how ill he feels but didn't want to worry you?

It must have been pretty grim for him to feel as bad as he has and not to get a proper diagnosis to account for it.

As for the consultant to start talking to him with the wrong file in front of him, that's outrageous. Bad enough when it's your own file, when at least the conversation is based on you and what your problems are!

If he won't let you go with him, would he let somebody else. A brother or friend perhaps. Or even your oldest child. It's just that even with pen and paper for answers we don't take it all in. With all that has happened to him over the last 18 months there will be a lot of discussion, or at least there should be.

Anyway, you've found us for the future and we are very good at the supporting shoulder to lean on, so use us.

All the best
Sandra

Edited by member 06 Sep 2015 at 17:43  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 06 Sep 2015 at 19:22

Hi Lily

What sad circumstances.  Your husband has been suffering for a long time and this may at least be a contributory factor to his attitude.  Your husband is typical of many males who are reluctant to go to their GP's with problems and it is often the partners who push these men for diagnosis and possible treatment.  You will notice on this forum that is very frequently ladies who respond and help or if this is not possible at least lend a sympathetic shoulder.

What you need to establish is whether your husband wishes you to help him, if not directly by attending appointments, indirectly through this sort of forum or otherwise whether he will join us or research treatment options open to him.  The options will no doubt be discussed with his consultant when all the tests and scans enable a full diagnosis.

Your husband seems to have been very unfortunate in not having his problems diagnosed and addressed.  Again men are often reluctant to keep going back to the medics and pushing for answers which sometimes becomes necessary.

I very much hope that his PCa is at an early stage and curable and that his other medical problems will be resolved.

Finally, I commend you for what you are doing and hope that all this may lead to a reconciliation between you both, if that is what you both want.

 

Edited by member 07 Sep 2015 at 03:06  | Reason: Not specified

Barry
User
Posted 06 Sep 2015 at 19:47

Lily, forgive a blunt question but is your husband African-Caribbean? And do you know how low the 'low' PSA was?

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

User
Posted 06 Sep 2015 at 20:48
Hi Lily

The link to the publications is above, if your husband doesn't want you to go with him the publications have good check sheets to use at appointments for asking questions and jotting down answers.

Maureen

"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne
User
Posted 07 Sep 2015 at 07:19

Hi

have a chat with the specialist nurses on 0800 074 8383, not just for men to talk to, will he let any of your children go with him.

nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 08 Sep 2015 at 12:18
Thank you, my problem is he isn't going to keep me informed about, I think its some form of punishment but I would hope that when reality sets in he may realise he needs people to support him
User
Posted 08 Sep 2015 at 12:23
Thank you I have taken all this on board I am hoping is week once he has had meeting with consultants I may be able to find out more and at least talk to him about everything, I am keeping my fingers crossed he let's me go with him or my oldest son, as he actually hasn't told anyone else and has forbidden me to tell Anyone, I wasn't even supposed to tell our children but I just had to. Thanks again for your help x
User
Posted 08 Sep 2015 at 12:26
Thank you so much its just so difficult as we are separated, you cannot help but care after 22 years of marriage and three children, yes we are not in love anymore but what has just happened i deep means we put aside our differences and work on get him through this, he just doesn't see it this way thanks again for your help
User
Posted 08 Sep 2015 at 12:37
Thank you, I feel bad for saying it but to go back to being a married couple in my opinion is never going to happen it took me months to pluck up the courage to face the inevitable and make the break, it was such a toxic relationship and had such a bad effect on our children but I still desperately want to help and support him and be there for him for whatever is coming, I fear the worst for him because I have been the one seeing him become more and more unwell and deal with the most terrible pain in lower abdomen and bladder as wasn't able to wee properly since December 2014, them the onset of sever chest pain, I was so worried and convinced it was something terrible and I made the appointment to get him seen in January and as I have said when seeing consultant he had someone else's notes on both times we saw him and he diagnose kidney stone and gave meds for it, my husband just assumed it was a kidney stone not wanting to pass and kept saying it would eventually and that he would feel an idiot and a nuisance going back again I knew something was badly wrong also I wasn't happy that back Jan 2015 his bloods said he was anaemic why wasn't that followed up, again I nagged and nagged to chase things up but he just wouldn't and they wouldn't speak to me due to patient confidentiality
User
Posted 08 Sep 2015 at 12:39
Hello no my husband is white Caucasian and PSA in January was 2 I think but I can check that x. Yes just checked it was 2

Edited by member 08 Sep 2015 at 12:42  | Reason: Not specified

User
Posted 08 Sep 2015 at 12:43
Thank you x
User
Posted 08 Sep 2015 at 13:07

Well Lily, you know yourself and your husband best and if you say there is no way back then you must know, you're the one that's lived/ is living with all this.

Given that you had to have the courage to face the separation, and given that you say the marriage had become toxic, then I salute you for hanging onto the memory of 22 years and three children and trying to do your best for him.

Well done you.

Keep posting if it helps you. You know we are all here to help if you need us.

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 08 Sep 2015 at 17:40
Hi Lily

A PSA score of 2 is pretty low but not unheard of, has your OH had a biopsy or MRI or DRE to confirm the diagnosis? as PSA alone is not sufficient to make a proper diagnosis, where you present when the diagnosis was given?

Take care

Roy

User
Posted 08 Sep 2015 at 20:51

No Roy - she has explained above that they are separated and he isn't giving her much information.

Tbh Lily, in the circumstances i don't think there is much you can do and so worrying and trying to read up on it all is a bit pointless - all you will achieve is to have info overload and loads of things that you can only imagine or guess at. If reality sets in and your husband wants support, he may turn to you as the mother of his children or perhaps that will be too difficult and he will turn instead to family or friends. Undoubtedly, the side effects of treatment are such that most men would not want their ex to know the details - it can be embarrassing and humiliating for men with a supportive partner so unimaginably embarrassing with an ex. Having said that, we have had women here in the past that have cared for ex-partners at the end-of-life stage but hopefully your OH is in the curable camp.

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

User
Posted 08 Sep 2015 at 21:11

Hi, no thats correct I wasnt at the diagnosis appointment as my husband and I had already separated just days before, I wasnt even aware he had an appointment, he must have done what I begged him to do weeks ago when he coughed up blood a few times and called doctors and booked appointment. You are right when you say about men being embarrassed etc he has only told me and my son so far, he is taking my two daughters out on Thursday to dinner when I believe he will be telling them. He had a psa test back in January that was when it was 2, since then he has had ct scans, bloods and other things, more recently since we separated ie in the last two weeks he has had what he describes as surgical procedures, it was a day or two after that that he got his diagnosis and is literally awaiting an appointment in next day or two to discuss, staging, aggressiveness and treatment etc, I just hope he tries to put our differences aside and let me help him through this.

Edited by member 08 Sep 2015 at 21:43  | Reason: Not specified

 
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