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User

Posted 31 Jan 2016 at 12:13

I am Bill, I am 56 married with two sons. I am a IT network engineer. I like rock climbing, hill walking and mountain biking.

I was officially told I had prostate cancer on 8th Jan although from a remark made by the guy doing the MRI I have had a very strong suspicions since 21st Dec.

I started having problems with weeing in July/August but put it down to my age but went to the see the GP in late November which eventually resulted in a diagnosis.

Gleason Score 4+5 = 9, staging T3b N1 M0

I started hormone treatment on 8th with a 1 month Zoladex implant 2 weeks later, seen the oncologist and they are arranging a high dose brachytherapy followed by 3 weeks external beam radiotherapy in about 2/3 months followed by 2 years hormone therapy

After the oncoligist consulation my wife and I have booked a skiing holiday in the Alps, so the information about insurance in the post from Graham 00 was useful. Thanks

I told my 3 brothers about their increased risk 2 or 3 days after the diagnosis and yesterday told my 3 sisters. I found yesterday very hard and the side effects of the hormone treatment weren't helping either

Request for advice

My two sons are both away at university and I haven't told them yet of the investigation or the diagnosis. The younger son has had some problems with stress whilst at school during his A-levels and was treated for depression with drugs and counselling so I am concerned about telling him as he is getting on really well on his course, really keen and passing all his assessments. He was not very happy when he had an alarm clock failure and missed a seminar !

Has anyone got any advice on when and how to tell my sons?

Bill

Edited by member 31 Jan 2016 at 13:12 | Reason: Not specified

User

Posted 31 Jan 2016 at 12:40

Hello Bill and welcome to the site.

There will be others along at some stage who have more experience of cancer with your scores so hang in there until they come along.

There is a wealth of knowledge and caring on this site. We do all we can to support each other and answer questions as honestly and accurately as we can so ask away if you want to know anything.

Re: telling your sons. Having a grandson who has just started uni and having the same problems as your youngest I do understand what you mean about extra stress for him. I've only just found out he is on medication.

I do know that he doesn't cope very well with serious illness and the thought of where (in his head) it might lead.
Unfortunately these young people think nothing of getting straight onto Google and researching so irrespective of what you tell him, he'll scare himself silly.

Personally I would leave it for while, at least until he is likely to start asking questions about where you're going and why.

He will, of course, have to be told (he will need at some stage in the future to be checked himself, just like your brothers (and I hope they have taken it seriously enough to arrange PSA tests and won't just assume you have been unlucky and it won't happen to them) but just now, when he has the stress of courses and Uni?

Others will be along with their take on it and may well have had to deal with similar situations.

Good luck and best wishes whatever you decide to do

Sandra

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

User

Posted 31 Jan 2016 at 20:59

Hello Bill, hopefully I maybe able to help a bit our son is currently studying a levels at sixth form some years ago he was tested for aspergus and autism it turned out he demonstrated symptoms of autism to include high anxiety levels and need for routine but was not autistic. When we told there was a strong possibility Paul had pc, we told Ben tough decision he went off for a walk on his own and didn't really talk for a couple of weeks. In the meantime we sought help from people close to us our best friends who have known Ben for years and our in laws as our niece was going through cancer with her mom. I spoke to Ben's head of year at the start although v hard. We have found Ben has opened up to them as he didn't want to worry us. Each step we have informed Ben but only given him enough to understand the hardest was when Paul had his operation 4 weeks ago, v quiet and hard for him to see his dad so weak. My advice would be inform your sons when home giving only information they need to know -the unknown is the biggest fear of all. Tell them about this website only and how they can chat in confidence and finally although difficult how they themselves must look after themselves in later years. Take care. Jayne x

User

Posted 31 Jan 2016 at 21:42

Bill,

You know your sons best and how likely they are to take information of your PCa and at the end of the day it will have to decide what/when you tell them. One approach could be not to mention cancer for now and perhaps just say you are having treatment for urinary problems which is true, though not the full story. You would have had to decide how you would elaborate if more closely questioned. However, you have already told your brothers and maybe somebody else? I don't think it would be advisable for your sons to learn the full extent of your problem from others, so you would need to seek their discretion if you decided to proceed this way.

Edited by member 31 Jan 2016 at 22:19 | Reason: Not specified

Barry

User

Posted 31 Jan 2016 at 22:07

We told our children in different ways. We took our second daughter to see Newcastle play and then told her afterwards - she has said since that it was like being mugged ... to have a lovely afternoon and then wham. Our son didn't really say much or ask anything when we told him but a few months down the line he got very upset in the car one day - seems he had done some research because I had been banging on about him having a prostate-healthy diet and realised how much at increased risk he will be when he is older. That wasn't an easy conversation.

Generally speaking, the others took it in their stride - when J was first diagnosed we had explained that dad had cancer but it was very curable and no big deal. I think they were a bit shocked when it came back but haven't done any research themselves and don't seem to over-worry about him .... probably because we were so understated about it and tend to be a very perfunctory, practical family anyway.

In your circumstances, perhaps it would be better to wait until you have all the answers to the questions they might ask .... such as 'is it curable?' and 'will he have an operation?' and 'why doesn't everyone just have chemo?' What you have to set against that is the fact that they may start to notice changes in you, especially if you lose body hair, start to grow man boobs, lose muscle etc in which case you will have to 'fess up before they start to worry :-(

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

User

Posted 31 Jan 2016 at 22:24

Hello Bill

My opinion differs somewhat! I think it's very important that you tell your sons as soon as possible. All it takes is for someone they know to see you at the hospital, and they will find out from someone else.

I know it's a completely different thing, but my kids are adopted. During the preparation for this, we attended a talk on how important it was for the children to know all along that they are adopted. Just dumping the information on them at a later date causes all sorts of issues, including a feeling of lack of trust because the information was withheld

I would advise that you download the appropriate parts of the toolkit from this site. Write down the facts and figures of your diagnosis. Give them the phone number of the specialist nurse from this site. And tell them both at the same time.

Louisr

User

Posted 01 Feb 2016 at 15:21

Bill, hello and welcome from me too.

I am very sorry that you are in this situation and can see that others are already helping you.

I have twin daughters ( then 20) who were away at university whilst own situation was being confirmed.

They were at the end of their respective second years. My GP told me that my results were through the roof and that I was to go home and sit by the telephone waiting for a call from the hospital that morning to confirm appointments.

But I also had one of my daughters coming home on a train there and then, with 3 of her friends for a weekend in nearby London and I had to collect them in 3 hours time. I had no time to even collect my own thoughts.

My other daughter had one more exam to go during the next week and was away from home.

We decided that we couldn't tell them immediately. Another week wouldn't hurt.?

It was hell. I don't believe in withholding info but I also didn't want to spoil a good time for the 1 with her friends and exam prep for the other.

The day after the exam my wife took my other daughter with her to collect her sister. When the 3 of them were together she told them that I was going to hospital for DRE with urologist and that it was almost certain I had cancer. I'm told that there were tears.

I was at work but couldn't wait to get home to see them both quick enough.

They've been with us all the way in this unfortunate situation. We've withheld nothing from them.

And we talk freely about it. And yes , there have been some tears and also much laughter especially when "Dad's flushing again !".

But one thing we both have ensured is to speak to their good friends as when we've seen them - my kids know I've done this.

So that we know that they know.

And they can provide support to our children if they need it.

In fact I've just returned from a weekend visit with my youngest and spoke to her best friend there.

She's keeping an eye out for her and they talk about what we as a family are going through.

I hope that this helps. Every family and situation is different.

I'm glad that you've aired this. I have not seen this as a post before.

Wishing you all the very best,

John

User

Posted 01 Feb 2016 at 15:36

My experience of telling our daughters was a bit different. The eldest one went to pieces, the younger one who's a police officer and very matter of fact said "well you get things when you're old don't you?"

I wasn't that old thanks very much!

Arthur

User

Posted 01 Feb 2016 at 19:43

Oh wow this is a biggie isn't it when and how do you tell your children, ours were 9 and 13 at the time and of course age is a big factor. We told ours straight away because it was obvious there was a huge problem over the last 3 years they have come to terms with it and in typical children fashion are now very blasai about the whole thing.

Honestly there are no cut and dried rules only you know your children and the right time will be the time that you choose, my only advise is like our children when it is obvious that there is a problem then with holding information often makes them worry more and imagination runs riot . Go with your Gut it very rarely lets you down.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 01 Feb 2016 at 21:06

Louise is absoutely right.

Someone could see you at the hospital.

Last Thursday when I was our local hospital waiting for the Onco , in walks the Secretary of my girls old school.

She was with her father . We also know each other but did not know we had connection to cancer.

First time I've encountered anyone there away from our local cancer centre.

Be in control.

Take the lead in the way you are most comfortable.

There are ways of letting your younger family members know that you are under surveillance without spilling all the beans.

And don't forget social media can overtake the situation.

News like this can spread like wildfire. I rang all our closest friends personal.

It was though hardest telling my brother and sister.

User

Posted 01 Feb 2016 at 23:04

Thanks for all the replies. A bit overwhelming and quite a variety.

Plenty to think about.

We'll have to think carefully before we act.

I'll post the outcome and any consequences for others to learn from our experience.

Bill

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