What do I tell my kids?

Telling my kids was the worst part of the journey , like others have said , it’s probably best when you know exactly where you are .

mine were 9, 14 and 16 . I told them all at the same time so 1) they all heard the same message , 2) they did not now or at a later date feel favouritism  3) any questions asked were heard by them all , some ask better questions and others were more shy  4) they can form their own support network so as time goes on they can talk to each other as they know best what they are experiencing .

whilst I was incurable and was given a short prognosis I didn’t tell them the prognosis as I always though they can deal with the end date when I actually have to . Doc said maybe two years , I am still here over seven years on so I probably did the right thing .  

we then went and played football in the park to show them that I was still ok that day . 

we are all different as are our kids but that’s what I did . 

hope all goes as well as it can do .

 Hi Nick, that is a very difficult one - our children are adults and we found it very hard to tell them. Have you looked into trials (nanoknife and UCL, HIFU) or options like brachytherapy?

Chris,

 I’m really sorry to hear your story but am very grateful that you’ve shared it. I think being honest but limiting the detail could be a path I take but ours are a little older than yours, so I imagine they’ll want to know more. Friends of ours have a daughter same age as my boy whose brain tumour was treated successfully by proton beam therapy, chemo and RT so they know the power of modern medicine. I’m hoping that will help. 
I’m also familiar with the power of the PS4! Hopefully that’ll keep them occupied and not dwell too much.

I count myself lucky with my diagnosis and hope you’ll continue to have years of great times with your son.

thanks

Nick

Cheers,

Chris

Well I don't have children so I can't compare things precisely. Prior to a formal diagnosis I  didn't tell many people, it could have been a false alarm and I didn't want people offering me sympathy over nothing. Also with it generally being curable I didn't think it was a big deal. I did casually mention I was having tests to my mom, and I probably should have waited until a full diagnosis before doing that.

Once I had a full diagnosis I told everyone, made a few jokes about glowing in the dark after radiation and made sure everyone new this was not a taboo subject.

I think once you have a full diagnosis you have to tell your children straight away. If not straight away then when? How do you think they will feel in five years time when they find out for some reason and they find you were keeping important secrets from them.

Now if the children were five or six I might be less inclined to say much, but teenagers can look everything up on the internet and will soon find out that with your diagnosis, you will probably live a full life.

[reposting a post I did some time ago]

Macmillan do some really helpful advice on this subject of telling children:

Talking to Children and Teenagers
(Unfortunately, Riprap, the teenager's forum which this refers to, appears to be defunct.)

There's a free Macmillan book available from most hospital cancer centres, and the PDF is available here:

Talking to Children and Teenagers when an Adult has Cancer

This explains that you probably do have to tell children, because they will pick up that they're not being told something, and often imagine it's something else such as parents splitting up, and/or something that's their own fault. It goes through what's age appropriate to say, and how much children of different ages are likely to understand, and ongoing conversations (telling them is not a once-off event).

I certainly appreciate not wanting to tell until you have the answers - that was my position with telling my elderly parents. (Would rather not having to tell them at all, but I am their carer, and it would have been impossible to hide lots of hospital appointments/treatments. Same considerations would have applied as trying not to tell children.)

Wishing you the best with this.

Are you sure about the spread to SV? It's more likely the MRI just didn't pick it up. PSMA PET is changing treatment for many men because it is way more sensitive.

Best of luck Nick. It’s certainly not easy but I’m sure you will feel better when it is done. Also they won’t have to wait too long until they can see something happening to get rid of the cancer. Fingers crossed all goes well and best of luck with the surgery next week.

Thanks for your good wishes Elaine. I can’t say I’m looking forward to this evening but I hope that they will be ok and at least we won’t have to hide everything still. They have seen a close friend get diagnosed with a tumour in her head at the age of 9 and go through years of very intense treatment, about to be 5 years clear. So they know the power of treatment.

I think that there is no point removing the prostate if he can’t get the SVs out successfully, which I think is very difficult or impossible if they are full of cancer (someone better qualified on here probably knows if that’s right). Maybe it’s better to leave it all in if you’re going to revert to RT? I don’t know. Anyway, fingers crossed.

N

Hi Nick.

My four middle aged kids saw my diagnosis as a possible early chance of equity release. 😆

Joking apart, they were all very supportive. My biggest concern was keeping the cancer news away from my two grand kids, who were then 8 and 3 years old. They both adore me and the eight old would have been particularly upset. Last summer  when I was swimming with them, they noticed my circular RARP scars across my belly and asked about them. I told them they were bullet holes from when I was in the Army. No wonder I'm their hero. 😂

Great news about your SRT PSA results. Long may they continue.👍

Edited by member 15 Jan 2025 at 08:46  | Reason: Typo