Husband's diagnosis

User

Posted 07 Nov 2015 at 17:41

Hello, My husband has recently been diagnosed with advanced prostate cancer gleason level 9 currently not metastatic,

He's having hormone treatment for four months with a view to reduce the size of his tumour.... I am reeling not sure how to support him, he has gone into his shell, this is out of character.Advice from you lovely folks would be good.

User

Posted 07 Nov 2015 at 20:07

Hi Leila,

Really sorry you have had this news. We are a friendly bunch and are always here to help with support and advice when you need it.

The only advice I can give in supporting your husband is to have patience with him. He may not want to talk now but there will probably come a time when he will open up to you. He could feel that talking about it may upset you or himself when he realises it's a problem that won't go away and has to deal with. It takes a long time to accept the situation sometimes. It did with me.

Don't forget you need support as much as he does.

Best of luck with everything.

Steve

User

Posted 07 Nov 2015 at 20:29

Hi Leila

HT could well be scrambling his emotions which he will be trying to adjust to on top of the diagnosis. So give him some more time to come around. In the meantime try to keep him of goggle and gently remind him there is life whilst on and after treatment to enjoy as guys here will testify to.

Ray

User

Posted 07 Nov 2015 at 20:46

Hi Leila,

Sorry about the diagnosis but you have found a good site.
I was dx in May with pca, Gleason 9, see profile, and started hormone treatment 4 months ago and early chemo 4 weeks ago. At the start it was very hard to get head around and it took me a few weeks in my own head and space. I then found that talking about it to my partner a great help. We talked about it when we both needed too and didn't when we wanted to. I also found it helpful on this site which made me more aware that we were not by ourselves and that there are lots of similar people on board the SS prostate cancer ship.

I am sure that he will start to open up to you shortly and also some genteel prodding may help starting it. He, and you, much to deal with over coming weeks, but talking about it really helps.

Cheers
Steven

User

Posted 07 Nov 2015 at 20:54

hi Leila
if hubby not talking with you does he have a good mate or a close brother/sister who is aware of his condition have a word with them to see if he or they can get hubby to talk, it has no doubt come as a shock to both of you

you may be feeling if I broach the subject I will get ignored and if you don't you or hubby may feel that you don't care, time will no doubt help, but all you can do is be their with all the support you can offer

as it is not metastatic you will have options, as you say the first one is HT, and I would assume the 4 months is so the hospital can access better

if you have a McMillan centre near by pop in by yourself and see them they have lots of advice and loads of books

nidge

run long and prosper

'pooh how do you spell love'

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

User

Posted 07 Nov 2015 at 22:51

Hello Leila and welcome

Sorry you have a reason for being here

There isn't much you can do at he moment to get the other half to open up about his feelings.

The initial shock, the fear of the disease is very hard to come to terms with. He is probably also very concerned about you and is reluctant to lay any more worry on you by telling you how he feels.

Obviously his Gleason is high but it is good there doesn't seem to be any spread.

Without putting pressure on him (ie don't keep asking how he is) let him know that you are there to listen when he feels ready to talk. You could perhaps point out that you are in this together.

The hormone treatment may make him feel unwell, although not all men react the same way, and he may get frustrated if he becomes tired.
Just be patient for as long as you can.

All the best

Sandra

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

User

Posted 08 Nov 2015 at 11:18

Hi Leila,

Give him space and give him time, the first few weeks after diagnosis are a terrible time.

They claim that in the week following diagnosis of prostate cancer men are 8 times more likely than normal to commit suicide, and 11 times more likely to suffer a cardiovascular event. (Royal Australian College of General Practitioners – Guidelines…Prostate cancer).

But we mostly all manage to get over that first period of 'why me', 'what did I do to deserve this' type of thoughts.

When he is ready you could point out that with PCa contained within the capsule it is something which can actually be cured.

Like your husband, I was diagnosed with Gleason 9, my PSA was 30.1, I am still here 8 years later, with no plans to see St Peter any time soon.

In those eight years I have been blessed with two wonderful grandchildren, I have retired and been on lots of holidays, I am as fit as ever, life is really good.

I expect your husband will soon realise that life is for living, and adopt the motto of guys on this site that 'I've got cancer, but cancer hasn't got me!'

In the meantime give him lots of love.

Dave

User

Posted 08 Nov 2015 at 14:41

Lovely post, Dave !

Leila, a diagnosis of cancer is bound to turn your world upside down as all the certainties that existed become uncertain. Everyone reacts differently but you both need time to take this in. My partner was never very open to talking, probably his way of coping but it was hard for me. Look after yourself, even if husband can't talk you may feel the need to talk to someone at Macmillan or the Support nurses at PCUK are very good and you can say whatever you want in confidence. Maybe no consolation right now but as others have said, if your husband's cancer has not spread you have a much wider option of treatments. Just 'be there' for him, sometimes that is as important as words,

Regards, Fiona.

User

Posted 08 Nov 2015 at 16:41

Leila

As another recently diagnosed I share some of the views expressed here. In my case even though I knew what they would say when I attended the appointment a week after the biopsy it was still a shock to have it confirmed. Maybe not helped in this case in that the consultant was running two hours behind schedule and I had been sitting waiting for what seemed like ages (but talking to the chap sat next to me I realised I was in far better shape than he was with his cancer having spread to the kidneys and elsewhere). At that appointment it seemed that the knife was the only option for me, based solely on the flow problems they had identified (yes, there were some, but how I hate those buckets you have to do it in for their test, enough to put anybody off). I certainly came away with the impression that the cancer was worse than I had expected and with a bone scan scheduled for the following week probably rubbed that in.

Two weeks later it was a different consultant who seemed to have far more time to chat and that changed the picture totally. All options were now open to me, it was only a 'small' cancer and wasn't going to kill me (but Gleeson 7 is not really small in my view), bone scan was clear. I came away that time feeling far more relaxed, and when I saw the oncologist the following week this confirmed it - although he thought surgery might be the right way there was really not much to choose between that and RT. No pressure was put on me, I decided on going for RT and came away that day with the hormone tablets. Knowing what I was doing really put my mind to ease after all the two-ing and fro-ing of the past couple of months while being diagnosed (6 different hospitals...).

Now several weeks into the HT I am beginning to see real progress with my flow much better, better nights sleep (still some way to go there) and getting back to normal life.

By the way my brother went through all this a couple of years ago - talking to him has also cheered me up a lot.

So keep smiling Leila and lets hope all turns out well for your other half.

Dave

User

Posted 08 Nov 2015 at 16:58

Leila, the hormone treatment may actually be having an effect on the way your husband reacts to this whole thing. It can make some men more emotional and even weepy, so when you say his reaction is "out of character", this could be part of the reason.

User

Posted 08 Nov 2015 at 17:59

Gentle , edging , helping , asking, slowly , will get him out of his shell when he feels safe . Awful it is . Crushing . But you can so totally help . Give him his little bit of time . I've started HT and it definitely affects emotions ok.
Chris

User

Posted 20 Nov 2015 at 10:14

Hi Dave,

Many thanks for your supportive response. Yes, he seems to be more emotionally settled. He really wants to get rid if the catheter, as this is

'cramping his style' We have decided to change diet drastically, we grow all our own veg, and don't eat processed food often. i am juicing veg daily, and we have cut out a lot of diary products. He still has milk in his cuppa tea, and is reluctant to try herbal teas, known in our house as ' handbag tea, or girls tea... The history of this is a long story.

He is waiting for a scan to be booked by the GP for January time, to see if the tumour has shrunk. In addition to all this we are having an extension built. I am now project managing that, which funnily enough i enjoy.

He hopes, as do i the tumour has shrunk enough to offer options.... My concern is, he doesn't want to read or research about his condition. This is out of character, as he is an avid reader, thinker researcher, with an interest in many things.I am sure he knows best though. he is also really reluctant to go out or speak to his mates, we live quite rurally and are both self employed so our lives have quite rapidly become more insular.

Its easier for me as i go out to work, but he is a musician, working in the studio, its a solitary life a the best of times.

Phew, lots of stuff dumped on to the keyboard, I hope thats ok.

I have found this site quite useful and supportive. Thanks people.

Leila

User

Posted 02 Mar 2016 at 11:09

Yesterday we saw the consultant who is planning the radiotherapy. He stated that he ( the consultant )is looking for a cure, and thinks my OH has a 50% chance of complete recovery.He is currently on hormone treatment for three yrs, and has a Gleason score of 9, with a PSA of 2.5 at the moment, We advised him of all the dietary & lifestyle changes we have made and he was to say the least cynical. His view is, nothing helps other than the radio poison. We had a long discussion on the drive home and decided whether, he is right, what we are doing is right, anyway we are going to continue the non dairy, diet with the Pomi-T juicing & tumeric etc.

Oh yes, we also asked about the Tamsulosin masking the PSA score, he said it did not, yet, I read it does?? any views on this please.

Interestingly, he also said that the side effects to HD brachytherapy & radiotherapy were minimal and should not be worried about. Now, I am not a great one for too much worry, but i do like to plan and be prepared, so, I would value some advice on how to prepare for Brachy & 23 sessions of radiotherapy please.

Well, we are now thinking of preparing for our growing season, and getting the land ready for another year of veggie growing.

I think we are well prepared and positive,I have had a lot of excellent advice here, and read so many wonderful stories.

Thanks

Leila.

User

Posted 02 Mar 2016 at 11:38

Hello Leila

Sounds like you are both in a better frame of mind now, and a plan of action has been outlined to tackle the PCa.

Your lifestyle changes sound healthy and worthwhile for anyone to follow, and may just help with the diagnosis too.

Your position is similar to ours, diagnosis wise, and you are tackling things the way we did.

My OH did not have Brachy, and had 37 RT sessions, but others will be able to elaborate.

Another difference was that we were offered a place on a trial for a newish drug. I don't want to confuse matters though, as this is a personal choice and not available at all hospitals.

I wish you the best of luck with the treatment, I understand from men on here that the RT is not as bad as it seems, and your OH will soon get into the daily routine required.

ATB

Alison

User

Posted 02 Mar 2016 at 11:51

Thank you Alison, yes we are both feeling positive. The diet change is good, to be recommended. OH, is fairly resilient so I'm sure he will manage.

Thanks

Leila.

User

Posted 02 Mar 2016 at 12:19

Hi Leila,

You will find lots of good advice about radiotherapy, be it external beam and/or HDR Brachytherapy, here on the website.

I have had both and you can read about my experience in detail in my profile.

I wouldn't worry too much about the side effects of radiotherapy, they are a sinch and short term compared to the side effects of hormone therapy.

What doesn't get a lot of coverage is the need to go on a low fibre diet during and immediately after RT, it is a bit counter-intuitive, for a few weeks you need to forget all about healthy eating and the '5 a day'. No wholemeal bread, beans, greens, fruit or salad, instead he should eat potatoes, white bread, rice, pasta, chicken and fish, with Jaffa cakes for a treat (My hospital's diet sheet specifically recommends 'Jaffa Cakes'!).

Bear in mind that the doctors will probablly want your OH to have hormone therapy for at least a year after he has completed radiation therapy. The standard used to be 3 years of HT with RT after the first 6 months or year on HT.

This isn't really an optional thing, nor a belt and braces approach, the RT and HT work together, if you wish to get technical search adjuvant and neoadjuvant hormone therapy.

And look on the bright side, the doc's are offering your OH 'curative' treatment.

Dave

User

Posted 02 Mar 2016 at 14:34

Re Dave's diet advice above: it is important to follow your own hospital's advice of course ... some men do have to go on a low fibre diet during RT while others need a HIGH fibre diet.

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

User

Posted 02 Mar 2016 at 16:16

Thanks for the responses and advice, we will take advice from the hospital and do more reading. Im trying to learn as much as i can, and get other views and experiences. nothing like first hand information.

User

Posted 10 Mar 2016 at 17:12

My OH has been on HT for about 5 1/2 months, and he has had no sexual feelings at all, we were aware of this and had discussed it as a loving couple. Today he told me he has had some sexual feelings and a bit of an erection. We have were both wondering if this was good or bad, does it mean the HT is not working, or is it good news. He is due to have HD Brachy next month followed by 23 sessions of RD in May.Last PSA was 2.5 he is Gleason 9. Any advice or experience please.Until his diagnosis and HT treatment we had an active physical relationship.

User

Posted 10 Mar 2016 at 21:14

It might depend a bit on which hormone he is on Leila. If he is on bicalutimide then it isn't necessarily that his loss of libido was down to the hormones, more perhaps the shock of being diagnosed etc. If he is on Zoladex or similar, it might be worth contacting his nurse specialist for advice and/or asking the GP for a blood test to check his testosterone levels.

Even if his testosterone is up, it might not be that the HT is failing - maybe just a rogue dose or injected wrongly. Or as above, the loss of libido was nothing to do with the drugs and so his interest is on the rise as he gets near to what he sees as proactive treatment.

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

User

Posted 10 Mar 2016 at 23:52

Thanks Lyn, He's on Prostrap, next injection due April 29th. He has his brachy mid April,so could it be anticipation kicking in? I'll see if will get a blood test to check testosterone levels.

Thanks

Leila.

Edited by member 11 Mar 2016 at 14:35 | Reason: Not specified

User

Posted 11 Mar 2016 at 17:02

Hi Leila,

I had something similar on Prostrap, I started on it and my PSA initially fell to 0.2, then 3 months later was back up to 3.5, then it fell away again to 0.1 and stayed on <0.1 for the next couple of years.

My local hospital has specialist Urology/Oncology nurses, who are readily available on the end of a phone without the need for appointments etc. They were very supportive and launched a bit of a 'Steward's Enquiry' into what had occured.

The consensus was that I might have been given a 1 month prostrap injection instead of a 3 month shot. The thing is that the boxes the Prostrap comes in look very similar and it's an easy mistake to make. My GP's surgery denied that they had made such a mistake, but then they would say that wouldn't they?

At my GP's surgery I have to collect the Prostrap from the pharmacy and take it with me to the nurses appointment. So subsequently I always made sure it said 3 months on the box.

Of course in a perfect world we shouldn't have to do that, but its worth yor OH keeping his eye out and reading the box, if for nothing else than his own peace of mind.

Dave

User

Posted 11 Mar 2016 at 17:16

Hi Dave, Thanks for your reply. He will defiantly check before the next injection. We have had a tough time with our GP's surgery, as my OH was complaining about poor flow for three years, then prescribed Tamsulosin. He then heard from the GP his PSA 8.5 and told if it continued to rise he's be referred to see a urologist. My OH was not satisfied with this and paid for a private scan and he was diagnosed with stage 3 Gleason 9 PCa

Now awaiting HD Brachy, followed by RT.... starting in April. My OH is quite clear he does not want to take out a complaint, but wants GP's to be better informed and attend up to date training and CPD.

In addition to all of this we have had 9 months of builders. ;-)

Thanks.

Leila

Edited by member 11 Mar 2016 at 18:14 | Reason: Not specified

User

Posted 11 Mar 2016 at 17:48

Now 9 months of builders ! That's a real complaint haha. Seems everyone down our road wants to knock their house down and then build another one in its place. One after another. Actually I'm jealous.
Best wishes
Chris

User

Posted 11 Mar 2016 at 18:38

Hi Chris,Nine months of builders, with the PCa diagnosis in the middle of it all, life can be such fun. The build should have taken three months, but his workers went AWOL. long story, nothing to do with us....

Thankfully almost finished now, just the odd bits. So now to concentrate on OH's treatment over the summer.Thankfully we are a strong loving couple.

I have read your posts,well done me dear, I have been humbled by reading many a story here yours included.... and I have found great support during my times of fear and weakness. The humour, strength and stories have helped me a great deal.

So now onward with chipping the plaster of me new bathroom walls, and sweeping the brick dust away.

Thanks Leila.

Edited by member 11 Mar 2016 at 18:51 | Reason: Not specified

User

Posted 28 Mar 2016 at 13:28

Happy Easter Monday,
Just a wee bit of advice, David is getting lower back pain & stomach ache, this is increasing . He is on his 2nd round of Prostrap, the pain can be quite debilitating, is this common, or has anyone else had similar effects on their HT. He's due his 3rd injection after his HDbrachytherapy mid April Prostrap injection end of April, then the radiotherapy after that...
Just a small note, has anyone read up on the current research on Aspirin for PCa?...
Will get to see the GP this week , but first hand knowledge is good.

Thanks again.
Lelia.

User

Posted 28 Mar 2016 at 14:20

Has he been checked for a urine / kidney infection Leila?

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

User

Posted 28 Mar 2016 at 17:05

Hi Leila, regarding your Asprin query.

I have just started the "add Asprin " trials in January and will be on it for five years, this is to prove/ disprove the theory that Asprin prevents cancer cells re forming/ returning after patients in early stage cancers of which PCa is one and throat, bowel and cervical cancers are others. It will be offered to patients that have just ended their RT treatment.

If you google "add Asprin trials" you can find out more if you wish.

There are already GP's that believe that taking Asprin every day is helpful in preventing cancer from returning and they will prescribe it if you ask and are lucky to have a like minded GP.

Not sure how/ if it will be of benefit in David's case.

Best wishes, Chris/Woody

Life seems different upside down, take another viewpoint

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