Loving hubby

I'm so sorry to read of your dilemma. Cancer hits everyone very hard. Those living with it and those caring for them. Some organisations recognise this fully and offer support to everyone affected. Prostate UK is one such organisation, Penny Brohn is another one. Prior to my own diagnosis I was a carer to my lung cancer afflicted wife who sadly died, so I am somewhat familiar with both sets of emotions.

Very best wishes,

Jonathan x

MissyL

Welcome to the prostate group.  It is a great shame that you join us in such circumstances and I’m very sorry for your plight.  It must really seem as if you have lost your hubby even though he is still there.

I’m hoping it might help if I give you some information about your husband’s cancer and treatment. I apologise if you already know this, but it may help with some understanding.

Firstly you mention a Gleason score.  This is a score given to the cancer when first diagnosed and is an indicator of how “aggressive” the cancer is or how high a “risk” it is.  The risk is of it spreading.  The maximum score is 10 (ten) A score of 6 or less is low risk, 7 is intermediate risk and 8 – 10 high risk.

The figure you mention, 183 was most likely his “PSA” level.  PSA = Prostatic Specific Antigen” and it is a substance released by abnormal prostate cells into the blood stream.  It was most likely a PSA blood test that first prompted investigations for cancer and he would probably have had a biopsy (to give the Gleason score) a bone scan and an MRI.

The bone scan and the MRI would have enabled “staging”. The stage 4 you mentioned.  Whether your hubby was told or not there would probably also have been a TNM staging.  In simple terms stage 4 means that the cancer had spread out of the prostate gland and to other parts of the body.  The NM indicates if the cancer had spread to the lymph nodes (N) and/or to other parts of the body (M).  It usually first spreads to parts of the skeleton (bone) e.g. pelvis, ribs, spine  or it can spread to other organs, e.g. the liver, where it starts to grow as a “secondary” tumour

If your hubby’s diagnosis was stage 4 and he had a TNM staging he should have been given information at the time of diagnosis about where the cancer had spread to.  Your hubby may be experiencing symptoms according to where it has spread to.

Unfortunately, as I hope you already realise, it is not possible to completely cure stage 4 prostate cancer.  However, it is possible to treat it.  Hormone therapy is the main treatment and it’s aim is to slow down the growth of any tumours.  There are different types of hormone treatment but generally they work by lowering the level of your hubby’s testosterone, (male hormone).  As well as treating the cancer, hormone therapy has significant side effects.    Principally it leads to a loss of libido and possibly impotence.  If not dealt with then this can have a significant effect on relationships.  It also leads to loss of muscle mass, (physical strength) and the development of female characteristics which, in many men can lead to psychological problems with their body image.

 Your hubby should have been receiving regular PSA tests for the last 8 years as this monitors how effective the hormone therapy is being.   If the therapy is working, PSA will be low,  if PSA starts to rise, the therapy is failing. You now mention he is “moving on” from hormone therapy, but I’m not sure quite what you mean by this.  Presumably he is on some new medication, do you know what this is?

Please find here a link to some information on hormone therapy.

I am full of apologies, I can only judge what is happening between you and your hubby from what you say and may be completely wrong.    It does sound as if part of the problem with your relationship has been due to the effects of the hormone therapy.  It has also been partly due to the way in which your hubby has reacted to it.

From what you say you know it does appear that you aren’t fully aware of your hubby’s condition, his PSA results or his therapy.  I understand that when people first receive a diagnosis they don’t always take in the information they’re given, but time has passed.

It does appear that you and your hubby aren’t talking about these things and I wonder if your hubby before the diagnosis didn’t share his worries or problems with you or whether this feature has happened since the diagnosis.  It could be either your hubby’s characteristic way of dealing with problems or it could be a reaction to his situation.  It is nobody's fault, neither his or yours.

As I think you realise,  talking about these issues would help your relationship and would also help him cope with his cancer better.  Many people these days are “living with cancer” i.e. they aren’t cured, but they are carrying on their lives.  Those that do this successfully face up to any issues their cancer is giving them and manage them.    Their lives are not “normal” in the sense of what was normal before their diagnosis, but they find what’s referred to as a “new normal”.

It is very difficult to decide what to do in your circumstances.  If your hubby won’t talk about things and carries on trying to be “normal”, e.g. by working then he will ultimately fail.  Working may serve a purpose at the moment, it will help avoid thinking about his condition.  Having a cancer diagnosis is really scary and I know from personal experience that having regular PSA tests is very anxiety provoking every time one’s due. 

It may be that things come to a crisis at some point but you‘d hope that at least your relationship could be improved before that point, so that you and your hubby can be mutually supportive.  Who knows what’s going through his mind if he doesn’t say.  He may be trying to be “strong” for your sake.  It can’t carry on indefinitely.

You cannot coerce him into doing anything.

It might be a good idea for YOU to find out what support is available for him and yourself locally.   Some of these things you can tell him about which gives him the choice of whether he wants to take up the support or not.  It doesn’t sound as if he is going to look into what’s available himself.

What’s available could include –

Prostate cancer support groups : there are many of these around the country for men AND women (partners of the men ) and male members include  those from all stages of the disease.  You could go on your own and talk to other women about their experience.

Carer support groups :  also many.  These groups are people who are caring for somebody with a serious condition

Cancer organisations ; charities that  provide all kinds of services for people affected by cancer i.e. your  hubby and YOU.  This could be anything from one to one or couple counselling, to classes  One such organisation is Maggies Centres, click to see if there is one near you.

To find out more about local services to where you live, you can call in to a Macmillan Information and Support Centre, click to find one near you or phone Macmillan helpline on 0808 80 00 00

If this is somewhat daunting, I appreciate that.  You can of course use this online community to share your concerns and experiences and find other people who may be experiencing the same.

You do not have to be alone!

PS

There is a carer’s group in this community which may be appropriate for you and I hope a colleague will contact you about it.

Thank you so much for your response. I think I was a little distressed when I made my initial post.

i do have full insight into hubbys cancer and have been with him at 90% of his appointments I in-fact deal with the consultants as he doesn’t really want to engage much.  The cancer has spread to four lymph nodes and he is currently on hormone treatment.

His physical appearance has changed and I get this must be hard for him but he just won’t talk to me ;(

Ive suggested counselling but he says he will go and then doesn’t.

i just wanted to know if this was usual behaviour and it seems sadly it is.

Really appreciate the advise though - thank you. 

Hi MissyL 

Sorry your going through this, I know how this is affecting you, as my wife is very much the same, all be it just over three years. My wife cannot even stand to watch programs or adverts on cancer, she is very unhappy, my wife gets very depressed.

I am a stage four prostate cancer victim, it’s in my bones as well, although only 67 I ( if I have to blow my own trumpet ) I am pretty fit but about half as strong as I used to be. I have a sense of humour and I try to make light of what I have even though I know it will get the better of me at some time.

Your husband is doing excellent seven years he’s been battling the cancer, good for him, of course I can understand how he feels, always wondering what’s next. Working is a good thing taking his mind off the problem, sometimes we don’t realise that people dear to us worry so much, your the backbone we need even if we don’t say it that often.

i hope he keeps fighting and at some point comes to appreciate others around him especially you.

take care

joe

Thanks Joe.

Hubby is amazing, he is only 57 and I’m dreading the day they tell me it is in his bones. I think it will get the better of him one day but Not just yet and I want him back

he says the the right things but his actions are different. When he is with me it is cold and although we both try and pretend it is the elephant in the room - we are nothing but friends now and I crave attention. 

Hi Miss L,

I completely understand from a woman's perspective. I think some of it is about acceptance as hard as that it.

Life is very different for me and my husband now but we try to create some intimacy and still enjoy meals out and holiday's as we did before. This time I value so much as it feels like 'us'

Having said all that my husband isn't the same and I would love nothing more than that not to be the case. So I 100% know when you're coming from.

Could you arrange a date night? Some time to be yourselves and have fun.

Out of interest what treatment was your husband on and what was his Gleason score? We're 4 lymph nodes affected at diagnosis?

One day at a time x