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User
Posted 30 January 2017 11:51:09(UTC)
Hi, my husband was diagnosed with prostate cancer in December. PSA 3.7 Gleason 3+3 and MRI showing no sign of tumour inside prostate and no spread.
Due to his anxiety and not being able to bear the thought of knowing cancer is inside him and could spread he has opted for RP which I fully support.
But his anxiety and associated OCD is completely off the scale and has completely taken over our lives. I really don't know how to help him with this as he is refusing any treatment for it. He is just so convinced he is going to die. We can't even have a conversation about his treatment or condition as he won't talk to me unless it is to seek reassurance that he's not going to die.
He says he feels completely isolated but I just don't know how to help.
His op has just been delayed for a week and will now be mid Feb which of course is making things worse and because I am not jumping up and down shouting at people to make it happen faster he just accuses me of wanting him to die.
Not sure there is anything to do I just needed to scream and shout at someone because I am so tired of being strong and holding it all together and trying to be normal for our two young kids.
User
Posted 30 January 2017 12:49:25(UTC)

I suggest you get him to read a few of the profiles of members of this forum, just click on our names. I was diagnosed as a Gleason 9, hubby is a Gleason 6. I'm still around 3.5 years later. Hubby has the chance of complete cure. Even if a cure isn't possible he still has many years left, almost certainly many more than I've had and will have. Hopefully, reading our profiles will help him to see he's going to be around for a good while yet and help him to adapt to his new normal.

There are two ways of dealing with this disease, we can let it make us miserable and thus blight our own lives and those of our loved ones or we can approach it positively and enjoy our lives as best we are able. Whichever course we take, the outcome is likely to be the same, the only thing that will be different is what life's going to be like between now and then.

I wish you well.

David

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User
Posted 30 January 2017 21:19:33(UTC)
Thanks all for your comments. I just really needed to vent it's been a particularly tough day. I have downloaded the toolkit and feel very informed about where we are at. I just need to drip feed it to hubby in bitesize chunks. He's not reading anything on the internet which is largely a good thing. I also ordered the surgery kit and he assures me he's read the info in that.
As I've said to a few people it's not the cancer that scares me in all of this it's everything else. I'm under no illusions that this is going to go away after treatment, although he thinks it will, because the regular check ups are each going to heighten the anxiety. I just hope that at some point he will realise that he needs help and actually follow it through. We have meds sat unused in the cupboard and a referral for counseling waiting at the GPs to be collected. You can take a horse to water...
In the meantime I've arranged some counseling sessions for me to try and better understand how to help him and give me an opportunity to vent. Julie.
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User
Posted 31 January 2017 17:05:20(UTC)

Hi Julie

A lot has already been posted.   Do look after yourself.

Some other ideas: Is there a local prostate support group ? face to face can help.   Wifes / partners are often affected more.

May I ask, how old is partner (is he 42 ?) and how did he cope with biopsy and all  the 'associated'  procedures to date  ?

I realise OCD presents itself it so many ways.    You yourself do need to be fully informed in my humble opinion about RP and after care.   Lots of things spring to mind ..  Will hubby cope with a 'std' ward and procedures ?  I had an over night stay and after care was my by wife. Yes I was mobile and able to cook etc. however you need to have a urine bag for at least a  week, you are 'sluggish' / tender. Physical body recovering takes circa  2 months at least.     

He shouldn't drive post op.  Check Insurance and recommendations.  I found it difficult to get in / out car for a couple of weeks (as passenger).    All the 'mundane' things !   Have you got help with 'youngster's' , does husband work etc ?   What friend/ neighbour / relative support structure do you have ? Reading this I'm more concerned about yourself in many ways.  

Feel free to post / ask questions , voice concerns.  As you can see by Chris J post and others; we are here to help as much as we are able from our experiences.    The journey you are both taking (and children) will be unique and nothing is certain.     From what info. you have posted, this is very early stage PC.  There are different types of surgery I assume you know, all will effect bladder control and sexual functioning, you need to ask about nerve sparing.  Post op; No semen is produced (as glands removed).   There's a lot of information to absorb.    Do take it steady and look after yourself. 

Further to your other comment :   The post op checks are minimal in actual time ;  'just' 2 minute blood tests at wherever location  at 6 wks post op and then quarterly for 2 years.  Each bridge can only be crossed as you come to it as you know.          

Gordon

 

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User
Posted 30 January 2017 12:49:25(UTC)

I suggest you get him to read a few of the profiles of members of this forum, just click on our names. I was diagnosed as a Gleason 9, hubby is a Gleason 6. I'm still around 3.5 years later. Hubby has the chance of complete cure. Even if a cure isn't possible he still has many years left, almost certainly many more than I've had and will have. Hopefully, reading our profiles will help him to see he's going to be around for a good while yet and help him to adapt to his new normal.

There are two ways of dealing with this disease, we can let it make us miserable and thus blight our own lives and those of our loved ones or we can approach it positively and enjoy our lives as best we are able. Whichever course we take, the outcome is likely to be the same, the only thing that will be different is what life's going to be like between now and then.

I wish you well.

David

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User
Posted 30 January 2017 12:53:45(UTC)
Hello,
Welcome to the site, there undoubtably will be many answers to your questions on here from other users, the best advice is don't panic look at my profile to understand what I've been through.
This is another chapter in your life, your lives are going to change, your husband is not going to die yet, I been told I have light years ahead of me, more likely to die of something else other than cancer.
Try to encourage your husband to visit this site, it will give him courage, it did me, I'm more relaxed with my condition than I was before knowing I'm not on my own.

Best wishes
James
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User
Posted 30 January 2017 13:03:52(UTC)

Hi I want to answer this the best I can so will try ok. I was exactly where your husband is this time 2 years ago but with a much worse diagnosis. Make him read this reply.
I am bipolar and have suffered with anxiety and panic all my life. Also OCD. The main difference is that I didn't want treatment I was so unhappy and depressed whereas your husband is the polar opposite. However I figure our anxiety levels are the same and they are terrible for the whole family and UNSUSTAINABLE. It's essential you seek help and maybe seek a short term anti anxiolytic to get you through this stage. There is zero shame in that and you need a straight head to absorb everything that is going on. It's important not to self medicate with alcohol also.
You haven't posted your husbands gleason score ? Did he have a biopsy ?? I am not an expert but how much advice have you had regarding this. Your diagnosis is not severe yet and you could even opt for active surveillance. Phone the nurses on this site who are superb and explain. Get the info toolkit so you are aware of all treatment options. I get that he wants it out , but that comes with its own set of issues which create more anxiety.
Please try to get help. We all need help in our lives at certain times.
Keep in touch




If life gives you lemons , then make lemonade
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User
Posted 30 January 2017 13:06:31(UTC)

Hi, my situation was very similar to your husband's - I was diagnosed in Jan 2016 (at 41 years old) with PCa, with PSA 5.1 Gleason 3+3. My MRI also showed no signs of tumour inside the prostate and no spread. I delayed treatment for amout 6 months (on Active Surveillance) as I was the other extreme and in pretty much complete denial. I had RP in July which went better than I dared to hope. It took about a week after the catheter was removed to have contenance again and probably about 4/5 months to recover from ED (although I am still on Cialis). I've also had the all clear from my surgen.

I'm not sure this will help but it sounds like it has been caught early and if his situation is similar to mine there's no reason not to expect to be completely cured. 6 months on from my surgery I am so glad I opted for the RP treatment and I couldn't be more relieved with the results.

Andrew.

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User
Posted 30 January 2017 14:41:55(UTC)

I am guessing that if he is convinced he will die, and accusing those that love him of wanting to die then he is not a great candidate for AS. There is little we can suggest when the main problem is someone's emotional response to their diagnosis rather than the actual disease - only you and his medical team will know how his anxieties usually present and what usually helps him to regain some stability. Perhaps a chat with your GP, wife, will help you and will also give the GP a heads up that your husband is not coping well. And now you have found us so you can always scream and shout here instead of in the real world.

CJ, he must have had a biopsy as he has a Gleason grade of 3+3.

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


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User
Posted 30 January 2017 14:47:44(UTC)

Hello from me too (another wife) and welcome

Unfortunately,  when your other half suffers from OCD there isn't much you can do to help him overcome his fears.  You can't force him to come on here can you.

So..... at the moment you have to look after yourself,  You have young children to take into consideration too so much as you love him, you have to get your priorities right.

As Chris says, perhaps you could approach your GP and get some help from him, either medicine or counselling.

As far as I can tell from your post, your husband is in the cure camp and he would likely have been eligible for AS or Brachytherapy, but of course he wants it out so he probably wouldn't consider anything other than RP.

Do what the others suggest as far as ringing the nurses on this site. It will help you by having a  medical person to talk to.

You could download The Toolkit from Publications as it is full of information that you both might find helpful, if you can get him to look at it that is.

I'm sorry that I can't be more helpful and hope that you've gained something from what we have all said and hopefully others will come along to add to your post

Best wishes

Sandra

 

We can't control the winds - but we can adjust our sails
User
Posted 30 January 2017 15:11:27(UTC)

It must be very difficult for you but there are many people on this site that have gone through all the different options that your husband will be offered in beating this disease and it will greatly help him see that he is not alone in the fight.

I had my similar Gleason to your husband 3+4=7 and was operated with Brachytherapy on in September 2016 and have just had the first PSA result with a good drop. I have sat at the laptop for many hours reading all the members Journey some a lot harder than mine but all with their wives help and backing that I could see was very difficult at times so please persevere with him and get him on line or continue yourself you will always have someone to talk to on here.

Good luck John.

User
Posted 30 January 2017 16:58:18(UTC)

Hello
Sounds like you've got your hands full - please use this site and phone the nurses. This site is so full of positive people, and I feel normal amongst them. The nurses are excellent too. Hope your husband comes to accept a better reality soon.

User
Posted 30 January 2017 18:50:48(UTC)

Hi
I don't often post on here, but I feel that your husband is getting himself into a right state. As others have said you aught to get him to read some of the profiles on this site.

A Gleason 6 tends to be more of what we term a pussy cat rather than a tiger. I was Gleason 7, but with a stage of T3b, which meant that it had penetrated the capsule. I had my RP almost 11 years ago and I still feel fit as a lop, i know that I'm not in the cure camp, but I have no trouble living with that fact and I enjoy every day to the full.

I feel sure that your husband is in the cure camp and that he should get on and enjoy his two kids to the best of his ability.

Stu

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User
Posted 30 January 2017 20:26:43(UTC)

Good point Stuc. My dad had G7 and had surgery when he was 62 - we are busy planning his 80th birthday party :-)

The thing is, wife, that your OH will probably still be here in 15 or 20 years but once diagnosed that fear of it coming back and the constant blood tests for the rest of his life never goes away. You might need professional help to support him through it, it is a huge task.

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


User
Posted 30 January 2017 21:19:33(UTC)
Thanks all for your comments. I just really needed to vent it's been a particularly tough day. I have downloaded the toolkit and feel very informed about where we are at. I just need to drip feed it to hubby in bitesize chunks. He's not reading anything on the internet which is largely a good thing. I also ordered the surgery kit and he assures me he's read the info in that.
As I've said to a few people it's not the cancer that scares me in all of this it's everything else. I'm under no illusions that this is going to go away after treatment, although he thinks it will, because the regular check ups are each going to heighten the anxiety. I just hope that at some point he will realise that he needs help and actually follow it through. We have meds sat unused in the cupboard and a referral for counseling waiting at the GPs to be collected. You can take a horse to water...
In the meantime I've arranged some counseling sessions for me to try and better understand how to help him and give me an opportunity to vent. Julie.
Thanked 2 times
User
Posted 31 January 2017 17:05:20(UTC)

Hi Julie

A lot has already been posted.   Do look after yourself.

Some other ideas: Is there a local prostate support group ? face to face can help.   Wifes / partners are often affected more.

May I ask, how old is partner (is he 42 ?) and how did he cope with biopsy and all  the 'associated'  procedures to date  ?

I realise OCD presents itself it so many ways.    You yourself do need to be fully informed in my humble opinion about RP and after care.   Lots of things spring to mind ..  Will hubby cope with a 'std' ward and procedures ?  I had an over night stay and after care was my by wife. Yes I was mobile and able to cook etc. however you need to have a urine bag for at least a  week, you are 'sluggish' / tender. Physical body recovering takes circa  2 months at least.     

He shouldn't drive post op.  Check Insurance and recommendations.  I found it difficult to get in / out car for a couple of weeks (as passenger).    All the 'mundane' things !   Have you got help with 'youngster's' , does husband work etc ?   What friend/ neighbour / relative support structure do you have ? Reading this I'm more concerned about yourself in many ways.  

Feel free to post / ask questions , voice concerns.  As you can see by Chris J post and others; we are here to help as much as we are able from our experiences.    The journey you are both taking (and children) will be unique and nothing is certain.     From what info. you have posted, this is very early stage PC.  There are different types of surgery I assume you know, all will effect bladder control and sexual functioning, you need to ask about nerve sparing.  Post op; No semen is produced (as glands removed).   There's a lot of information to absorb.    Do take it steady and look after yourself. 

Further to your other comment :   The post op checks are minimal in actual time ;  'just' 2 minute blood tests at wherever location  at 6 wks post op and then quarterly for 2 years.  Each bridge can only be crossed as you come to it as you know.          

Gordon

 

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User
Posted 31 January 2017 19:39:37(UTC)
Hi
I was diagnosed in November with similar results and I indeed thought I was going to die that week !!
But I have to say the nurses at this charity on the phone are brilliant and kind and reassuring and I have found this site excellent.
I had the Robot on Jan 4 and I'm still here and you do go through every emotion under the sun but small steps and support I'm sure you'll be fine
All the best
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User
Posted 31 January 2017 21:48:13(UTC)

Some very good points. Thank you for all the tips.
I have been doing a lot of reading around the subject and also chatted with the nurses on here so feel ok about treatment options, side effects etc.
Post op we are in a good position as I have a very supportive boss and I'm able to work from home so can provide the support needed. Although having had two c-sections and just having to get on with it I'm unlikely to be very sympathetic to him moping around.😉
I wish we could just get the date fixed though they seem to be fannying around quite a bit with one person saying it's scheduled and then another saying it's not grrr. Each time it plants another seed of doubt that something is going wrong. I have a feeling it's something to do with it being a private procedure vying for time in the NHS facilities which is really frustrating because if we weren't going private the NHS would have to find time to do the OP during normal hours anyway instead of being paid to use their resources when they would otherwise be sat idle. I.e. at the weekend.
Otherwise a better day today after he got the all clear on the MRI on his spine which confirmed he doesn't have bone cancer in his spine, just a bad back like the rest of us.

User
Posted 31 January 2017 22:15:01(UTC)

Originally Posted by: Online Community Member

 I have a feeling it's something to do with it being a private procedure vying for time in the NHS facilities which is really frustrating because if we weren't going private the NHS would have to find time to do the OP during normal hours anyway instead of being paid to use their resources when they would otherwise be sat idle. I.e. at the weekend.

 

I am not sure it is entirely reasonable to choose to go private and then blame the NHS for your private consultant delaying the op?  Perhaps ask the consultant to explain the delay? 

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


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User
Posted 10 April 2017 18:35:50(UTC)

When does the fear subside?
OK so as those who've read my posts will know my OH suffers from severe health anxiety and getting a positive PCa diagnosis was our worst nightmare, not only did we now have cancer to deal with but it just reinforced in his mind that he had been right all along and that all of his worrying had been justified.
He had his RARP on 11th Feb and his post op PSA was 0.01, surgeon very happy with results and not planning on seeing him again.

So my question is this. What is a normal level of ongoing anxiety?

Clearly it is not where he is at, which is chasing every ache and pain convinced it is prostate cancer that has spread or another undetected cancer. Each time demanding a referral to see one consultant or another, scans, tests, etc, etc. I live in a world of eternal optimism where nothing bad is happening until it comes crashing through the front door, i.e. at the point of diagnosis, and even then it can be treated / cured until it obviously can't. I just wonder if I'm being too harsh on him expecting him to return to some form of normality so soon. Does it normally take weeks or months to sink in?

We saw his GP on Friday who basically told him he had to get treatment for his anxiety otherwise he would never work again and could end up losing everything. Harsh words but I still don't think he was hearing it. Anyway we have a referral to the psych team on its way. I just hope BUPA are true to their word and will continue to support him through this too. I hope that I can support him too.

User
Posted 10 April 2017 18:58:11(UTC)

Hi we have chatted before. I have suffered with anxiety and panic most of my adult life , and it took the doctors over twenty years to diagnose me as bipolar after trying loads of anti depressants on me. So I know where you are at yet your hubby seems at the far end of the spectrum and seems to really need calming down medicinally. I did manage 28 yrs of fantastic employment despite all this , and after 3 yrs retirement have just started a job as a care nurse , even caring for men in the final stages of this disease.
I think it's far too early though for your hubby to chill despite a great result. It's very early days and it's a horrible operation both mentally and physically. You may be lucky but for most of us it is a long long road of worry and treatment. Having said that I am 22 months post op and very probably incurable ( I find out at the end of this month ) yet I'm finding I'm probably in a happier place than I have been in ages and simply can't be bothered worrying about it anymore. Worrying eats at you and eventually I think you just can't sustain it anymore. I've come out of the op fantastically at 22 months in all areas of recovery and if I had been undetectable my life would be just peachy , yet there are people in this position worrying endlessly about their psa still years down the road. I guess we are all different in our make up. Your hubby does seem immensely vulnerable and I'm hoping a really good psych team can get him on the right track in a few ways. I think I've told you before I was actually suicidal just before , during and after the op , so it is possible to recover ok with lots of help. I have a fantastic wife which I hope you are for him as he will need you. I've also found the lion inside me although it took nearly 50 yrs. I'll be thinking of you and hoping x




If life gives you lemons , then make lemonade
User
Posted 10 April 2017 19:38:50(UTC)

Oh wife, I am sorry to say that even without a mental health issue, for some men that anxiety will stay for the rest of their life as it does for some women after breast cancer treatment. You will find men on here 5 or 10 or more years down the line who will still be terrified if they feel a new ache or pain, will still imagine that the cancer is spreading unchecked around their body and no-one has noticed, or who just feel an enormous anxiety as it comes up to each PSA testing time.

It may be that your OH would have felt this way regardless of his history.

I am shocked for you that there are no plans to see the surgeon again - a regular meeting with the specialist can be very reassuring. Who is going to monitor his PSA, recovery from surgery, any emerging side effects etc?

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


User
Posted 10 April 2017 20:26:33(UTC)

Lyn, don't worry we have not been cast adrift, the surgeon has already organised the 3 monthly PSA check and follow up.  That was my flippancy coming to the fore again.  As you know he has no ED, no incontinence and currently no signs of spread so not an awful lot to talk about and he is not expecting it to come back.

Chris, thanks for your insights.  I feel happier now that the GP has taken charge and is referring him to a psychiatrist and not just loosely suggesting counselling as he was before.  Whilst counselling can be a great thing I think there is more going on here and it needs a more joined up approach.

We'll just take it one day at a time and see where we get to. tomorrow is the shoulder specialist so hopefully he can allay those fears and next week I have booked a few days away.  I just hope I can get him there, we all really need a break and I am hoping that a change of scene might just break the cycle a bit.

Onward and upward.

User
Posted 10 April 2017 21:55:31(UTC)

I think you are under the same Mr P as most of my family and if you have read any of my old stuff you will know that in my opinion he is the best thing since sliced bread but can tend towards a tad over optimistic :-/ With a positive margin the likelihood of recurrence is higher (though not as high as with PNI) so important to monitor PSA closely

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


User
Posted 10 April 2017 22:00:04(UTC)

PS did anyone explain to him that shoulder pain is very common after LRP? Most popular surgeon / nurse explanation reported on here is that it is a result of being tipped head down for a few hours.

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


User
Posted 11 April 2017 06:54:14(UTC)

No, no-one explained about shoulder pain post op. He was too stressed out about other things I think. The shoulder pain precedes the op so I think probably another cause although it could of course have been made worse by the procedure. Thanks for the heads up.
Julie

User
Posted 11 April 2017 07:13:51(UTC)

Julie, I've been treated by a psych for years. I tend to feel anxiety, fears etc etc. I couldn't do without my treatment. It helps me deal with issues and not get out of my mind when I come into problems. I hope the pshy will help -I assume he has accepted taht help-?

Best wishes, great wife!

Lola.

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User
Posted 11 April 2017 16:23:10(UTC)

Julie, 

I'm not sure anxiety or anxious describes how I felt or feel, but the whole issue does "cast a shadow" over ones life. For me the shadow isn't as strong 2 years down the track, but it is still there.

On a positive note, I genuinely feel that the psychological impact has been quite cathartic. I now know what is really important to me, I'm far less judgmental and I think it has bizarrely made me a much happier and hopefully better person. 

Pablo

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User
Posted 11 April 2017 21:54:44(UTC)
Hi Julie,

Here are my suggestions

1. Ask your surgeon to explain the pathology results to you both. If, as it appears, they consider the cancer to be contained in the prostate, and the surgical margins clear, there's a good chance that they have effected a cure. Ask the surgeon to explain what surgical margins means.

2. Ask your surgeon to explain what will happen if you get a PSA rise at any point. Ask him what this actually means if there is a PSA rise. Does this mean that OH has an incurable cancer (it doesn't). Ask him to explain salvage radiotherapy.

3. Ask your surgeon what would happen if SRT fails. What next? Ask him to explain hormone therapy.

I'd like to add more questions, but I don't know what comes next!

My father was diagnosed with local spread to seminal vesicles in 2001 age 61. He's 76, and well.
My OH had surgery age 60 in 2014, and salvage RT this year. We're still expecting a cure.

It's a very overwhelming disease in the early days. You either read everything and want to move quickly (me) or read nothing and agree with everything the doc says (OH). Your husband obviously requires information and reassurance.
User
Posted 05 October 2017 21:31:48(UTC)

Update.
PSA has been measured a further 3 times since last post with readings of
0.004, yay still going down
0.005, OMG it's going up, panic
<0.003, happy days or at least it should be but instead this result is obviously wrong and really it is still rising.
So on the cancer front all is good and it is looking very promising that the cancer has had it's butt kicked out of the park.
On the anxiety front we have had several steps forward and several steps back again. We will keep battling this one.
All the best everyone.
Julie

User
Posted 13 October 2017 22:14:20(UTC)
Hi Wife,
Those are low results. I'd think a variation of 1 or 2 could be noise in the system or just body reactions. I was anxious but re-assured pre-op when the surgeon's assistant said how successful their team had been over 5 years. There are thousands of PCa operations every year and your case sounds a low risk one.
Regards
Peter
User
Posted 13 October 2017 22:41:51(UTC)

The variation is so minute that blood could be taken for PSA test 3 times in any one day and give these results. Some hospitals have dropped testing to a further decimal place because results are unreliable and only cause unnecessary concern to patients who think such small differences are significant.

Barry
 
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