What do we tell our sons, and when?

User

Posted 27 Dec 2017 at 22:21

Good evening everyone. A year on since my diagnosis and prostatectomy, I've been thinking about my 15 year old son. He knows I've got prostate cancer, but he's not the sort to go researching it on the internet.

So, when do we tell our sons that they may be at higher risk of PCa because their father had it? I was only 46 when diagnosed with a T3b and Gleason 9. My oncologist has said my son should start PSA testing at the age of 30.

I won't be telling him anytime soon, but i would appreciate others' thoughts on how we 'younger' men with PCa tell our sons about their increased risk.

And is there anything they can do to reduce the risk, apart from the obvious healthy diet and exercise?

Ulsterman

User

Posted 28 Dec 2017 at 23:03

Sorry Guys ,

I have to disagree with everyone . Knowledge is key to helping beat this disease.

The more men that can be reached and the younger the men the better only because they can get the message out there that this is not just an old mans disease but A Mans disease .

I bang my drum constantly for Afro Caribbean men who are 3 x times more likely to suffer from this disease than Caucasian men , the more shout the more clout to hopefully discover maybe one day a cure , better treatment , better choices , more information anything that might give more funding . Those who shout loudest get heard .

It’s so sad that if this was about breast cancer you wouldn’t even consider holding it back from your loved ones .

Shout loud Guys Shout as loud as you can until you are heard .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 01 Jan 2018 at 23:54

It may be worth preparing yourself for the possibility that no matter how serious or relatively minor the issue that you seek to forewarn your children about, they may simply choose to ignore your warning and advice. This may frustrate you, cause you considerable anguish, there may be little that you can do about it. Sadly. So, then, what do you do? You have a choice? 1. You can remind them every time you see them of the risks they are or may be exposed to, and accept that this may negatively impact upon your time together. 2. Or you stop warning them.

I did not wait for concrete proof "beyond a reasonable doubt" of a link to show genealogical passing of PCa passing down from one generation to the net before I warned my sons.

That said, they treat the whole issue, and other health issues, very lightly.

My choice was to do what I can as and when I can to warn them. After that, it's up/down to them.

Regardless of what anyone else thinks, including me, all you can do is what you believe is best at that time.

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 28 Dec 2017 at 00:11

CJ, I don’t think there is any doubt from scientists about diet and boys - it is the impact of changing diet once you have been diagnosed that is unproven. That’s what our onco and urologist said, anyway :-/

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

User

Posted 28 Dec 2017 at 23:46

This is a good post tbh. Yes I agree with a lot of it. Thanks Lyn for pointing out avoidance where possible with diet etc and early testing. Elaine is very aware that whilst I may not be around she should ensure our son is given his options as for early testing. But each to your own heh. I might stand out with some mental illness , but as I said before my brother is a fully qualified doctor and consultant radiologist - he was one of the youngest in the country at the time. Super-boffin! Will he take a test ????? A resounding NO !!
Do I blame him ? To be honest no ! I still have to balance in my mind maybe being dead already since prognosis , or ”enjoying” the life that wasn’t quite saved for me with a sure sentence hanging over me. Yes I’m a cup half empty kind of guy which I can’t change I reckon , but each day since my “ saving “has just got more intense. Indeed my wife will chase up my sons psa at 35 when I’m probably long gone , but still my own feelings are that it’s his own feelings when he gets to that age with posibly zero symptoms like myself. No man wxnts his mojo extracted whether young or old , and the cure can be as crippling as the recurrence if in honest. Endless gut-churning angst.
I’d like to thank the whole forum for another years supprt. Take care all x

Edited by member 28 Dec 2017 at 23:53 | Reason: Not specified

User

Posted 31 Dec 2017 at 11:56

Sallyyyy

Thanks for the way you worded your post. I think you expressed my thoughts better than I did! I worried some might think I'm over reacting and might put unnecessary worry on my son and perhaps judge or criticise. But everyone is entering into this debate with wisdom and sensitivity. It's bad enough dealing with PCa and I hate the way it keeps throwing up new things to deal with.

I was 46 when diagnosed with T3b and Gleason 9. I share your concern that PCa might be more aggressive in young men. And as this thing will probably kill me (my post prostatectomy is now showing steady rises and I think I'll be off to radiotherapy soon), I want to gain knowledge that may help my son.

Your thoughts on BRCA were interesting. I knew my son was at risk, but now it seems that if I have the BRCA gene then my daughter is also at risk of breast cancer. This disease just seems to throw up new things.

Where did my PCa come from? My family has, as far as I know, no history of PCa or breast cancer. In fact, before my PCa, I thought my prospects for a long life were pretty good as mum, dad, aunts, uncles etc lived well into their 70s.

I might ask my GP if I can have the genetic test. With no family history, he'll probably say no.

As I said, I don't plan on telling my son anything soon - he has GCSEs coming up and I'll have to most likely tell him about radiotherapy soon. He'll have enough on his plate. My daughter, on the other hand, is studying medicine and so may come across stuff long before I'm ready to tell them!

Ulsterman

Edited by member 31 Dec 2017 at 12:13 | Reason: Not specified

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User

Posted 27 Dec 2017 at 23:55

I’m not entirely sure I believe in healthy diet and exercise as an avoidance of familial cancer. I’m an “ everything in moderation “ kind of guy , although I struggle a bit with my vino with a death sentence hanging over my head. I simply wouldn’t say anything until things are actually looking bleak. Why would you ?? It’s just involving someone else into the waiting game and rollercoaster when they could be living life to the full. I’m 50 and very unlikely to reach 60 now. My son is 7. We discussed it briefly as his very normal behaviour was causing me an inordinate amount of extra stress , but he forgot it in a fortnight bless him.
I’m not sure when is the right time , but I guess they need to be adult and there is definite likelihood of premature death.

User

Posted 28 Dec 2017 at 00:04

Our son was 18 but since he was dealing with his grandad, grandpa and dad all at the same time, it was a bit of a no-brainer to have a serious conversation with him about his own risk. I explained what the onco and urologist had told us; that if Dan changed his eating habits while still young, he could possibly avoid the same outcome. Lots of processed tomatoes (that wasn’t difficult as he loves ketchup and pasta sauces) and reduction of cheese, milk and red & processed meats - he does eat it but gets why he should limit intake and avoid factory farmed produce. He and I also learned together how to cook more healthily for his dad’s sake and I know now he has left home some of it has stuck.

He will be tested from age 40 if he wishes, but I prefer to remind him regularly that prevention is better than cure :-/

The added complication for him and his sisters is that we have a known brain tumour gene in the family so lifestyle risks of processed food, cling film, unwanted additives by water companies, sweeteners are my favourite nagging topics!

Edited by member 28 Dec 2017 at 00:08 | Reason: Not specified

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

User

Posted 28 Dec 2017 at 00:11

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

User

Posted 28 Dec 2017 at 13:26

I would hesitate to tell your sons about the genetic prospect of prostate cancer unless you’ve been identified as a carrier for the BRACA gene. My husband was tested and it was assumed that he would most likely be a carrier because of his young age, family history etc but, he wasn’t a carrier for it, it was just Sod’s law,! However adopting a healthy diet and lifestyle enhances the chance of combating this illness and coping with the treatment. Who knows what the future will hold for them after all we’ve made so much progress in the past few years.

User

Posted 28 Dec 2017 at 17:28

Thanks everyone.

I'd never heard of the BRACA gene, so I'll do a bit of research on that.

Had a PSA test today. Oncologist next Wednesday.

Happy New Year, everyone.

Ulsterman

User

Posted 28 Dec 2017 at 20:16

It is BRCA 1 or BRCA 2 and is indicated where there have been successive close family members with breast cancer, ovarian cancer and early onset prostate cancer. Be aware that only 1% of prostate cancers are linked to BRCA and only 10% of breast cancers - but it is the reason for the kind of stories you read in the press where a young healthy woman has a double mastectomy just in case.

We had a young man on here some years ago who had tested positive for BRCA and had been refused a prostatectomy - I don’t know what happened to him.

If you did ever decide to pursue testing, you would probably have to have counselling first. I went for counselling (different kind of genetic fault) and was completely talked out of it when they explained all the implications and unintended consequences!

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

User

Posted 28 Dec 2017 at 21:58

There’s a fair bit of information regarding this gene, my husband’s sister died from ovarian cancer at 49 and she had the gene. He was referred for seeing a genetic counsellor who outlined the consequences of being a carrier and he was given a month to decide whether to go for testing so it’s not to be taken lightly . As stated before, he wasn’t a carrier neither as the other four of his siblings just sad that his sister wasn’t picked up soonest then they could have carried out removal of her ovaries to prevent cancers. The next generation has been counselled and they will be tested .

User

Posted 28 Dec 2017 at 23:03

Sorry Guys ,

I have to disagree with everyone . Knowledge is key to helping beat this disease.

The more men that can be reached and the younger the men the better only because they can get the message out there that this is not just an old mans disease but A Mans disease .

It’s so sad that if this was about breast cancer you wouldn’t even consider holding it back from your loved ones .

Shout loud Guys Shout as loud as you can until you are heard .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 28 Dec 2017 at 23:46

Edited by member 28 Dec 2017 at 23:53 | Reason: Not specified

User

Posted 29 Dec 2017 at 01:57

Following this with real interest and concern for our sons who are teenagers at the moment. Very strong family history.
Their grandfather and every one of his brothers had it. He died from it - but was in his late 70's by that point.
My husband now has it at a younger age and much more aggressive.
My obvious fear is that it will be earlier and even more aggressive in the next generation (my sons) but I really don't want their young lives to be blighted by fear :-(
My hope (but I don't know if I'm just being naive) is that by the time they are in their late 30's - so twenty years time) even if they get Prostate Cancer - as I will ensure they have regular tests it will be picked up early and they can have surgery which by that point will have very little impact or side effects ????

User

Posted 31 Dec 2017 at 11:56

Sallyyyy

I might ask my GP if I can have the genetic test. With no family history, he'll probably say no.

Ulsterman

Edited by member 31 Dec 2017 at 12:13 | Reason: Not specified

User

Posted 31 Dec 2017 at 13:24

One of the most dramatic things that I learned during my pre-genetic test counselling was that if I proved to have the relevant gene, not only would I not be able to get life insurance or a mortgage in the future but it would also make it difficult for my children to do those things. Since they still have their whole lives ahead of them, and like any parent I wanted them to have the opportunity to own their own home etc etc I decided in the end not to have the test.

There is a thread on here somewhere about the legalities of life insurers asking about genetic testing within the family (with very useful input from a member who worked in the field) but I didn't feel inclined to risk it.

Not long after John had his RP, our plans to buy a place in France fell through when the mortgage was rejected - having had cancer, John couldn't get life cover and I couldn't get the mortgage in my name only. It never entered our heads that it would be a problem. Up to that point, the thing that J had found most devastating about getting cancer was that he would never be allowed to give blood again (up to then he was a champion donor) and that his organ donation card was now worthless.

Since less that 1% of PCa patients have the BRCA gene flaw and you don't have any sisters, mother, grandmother or blood aunts with breast or ovarian cancer, my guess is that you will not get anyone to agree to test you.

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

User

Posted 31 Dec 2017 at 14:33

Thanks, Lyn.

I would certainly look into the legalities of this as I certainly wouldn't want a decision that I had made to prejudice mt children's chances of a mortgage etc.

As a complete aside, I had planned a trip to Chernobyl but my oncologist has said no!😥

Ulsterman

User

Posted 31 Dec 2017 at 18:23

My Sister is terminally ill (less than 12 months) and I’ve got incurable PCa. My Mum had breast cancer although she didn’t die of it. Dad died young so we have no idea if he may have had PCa at some point and I’ve no idea what my Grandfathers died of. On balance we thought it worth being tested for BRCA 1& 2. Thankfully negative so we’ve told the kids. If it had been positive we would have researched it carefully before deciding what to do.

In respect of the PCa it seems to me to be a no brainer that you would tell your Sons to get tested from an early age. It seems to be proven that there is a greater risk of PCa if earlier generations have had it. It’s also very clear that if caught early it’s curable but, as in my case, if caught late it’s effectively a death sentence but with huge doubt about prognosis. My Son and his Son will be tested early!

User

Posted 01 Jan 2018 at 21:40

With regard to insurance here is the current position

https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/390174/Genetics_and_Insurance_guidance_2014.pdf

So at the moment you cannot be asked to disclose the result ( Huntingtons disease is an exception.

User

Posted 01 Jan 2018 at 22:56

That's the headline but read the small print :-(

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

User

Posted 01 Jan 2018 at 23:54

I did not wait for concrete proof "beyond a reasonable doubt" of a link to show genealogical passing of PCa passing down from one generation to the net before I warned my sons.

That said, they treat the whole issue, and other health issues, very lightly.

My choice was to do what I can as and when I can to warn them. After that, it's up/down to them.

Regardless of what anyone else thinks, including me, all you can do is what you believe is best at that time.

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 05 Jan 2018 at 21:19

At my consultation on Wednesday, I mentioned my concerns about passing on a gene to my children and my oncologist immediately offered to have me tested. I have to fill in some sort of questionnaire first and then decide if I want to move forward.

Ulsterman

User

Posted 05 Jan 2018 at 21:41

Hi all. Our circumstances are a bit different as my husband has had five different cancers in the last six years. The last one being advanced prostate cancer diagnosed in 2016. He has recently found out he has a gene mutation known as Lynch syndrome which makes him predisposed to certain cancers. Now there is a 50%chance that he has passed it to one of our children. After speaking with them both they have decided they will find out if they have the gene and are both awaiting appointments with the genetics team at our local hospital . They are both in their 30’s and have families of their own. It’s a very difficult time but we try and remain as positive as we can.

There’s always lots of difficult decisions to make on this rollercoaster ride we are all on.

Debbie x

User

Posted 19 Jan 2023 at 20:08

Hi Ulsterman

I know this post is very old, but it won’t let me message you.

I was wondering if you ever had BRCA testing?

thanks

User

Posted 19 Jan 2023 at 20:45

I'd forgotten I started this thread.

I had full genetic testing at the Royal Marsden. It was a trial for men under 50. The trial sought the DNA of men under 50 to see if it could determine why we got prostate cancer so early.

I don't know the results of the trial as a whole. But for me, the good news was I didn't have any of the BRACA genes or anything else that I may have passed to my children.

User

Posted 19 Jan 2023 at 21:05

Brilliant news! Thank you so much for your reply!

Im female but have a family history of early onset prostate cancer. I need to lay off the Google I think!

Thanks again

Kate

(fellow Berkshire-lite)

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