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 .
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
User
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?
User
Hi Nick , I’m 54 and six and a half years into my journey ( nearly 7 in fact ) ! I had surgery but was found to be T4 at surgery and am now incurable on hormone therapy with really only chemo and Enza left. At surgery my son ( my only child ) was 5 yrs old. He remembers visiting me in hospital. We just said I had an operation. Only in the last 3 yrs he has asked about all the appointments and scans etc , and about the palliative RT that I had ( we didn’t use that word ). My wife and I simply said that I’d had cancer and was just being regularly monitored !
Recently however they have been discussing cancer a lot at school and so began the deeper questions which were answered honestly and fairly and he seemed to accept them. He now knows I’ll die of cancer but that it is being held at bay for any amount of time by the medicine I’m on. I think he got bored of the conversation and got back to his PS4 😆. Children are extremely resilient. I’ve wanted to explain more over the years but my wife forbade it saying he only needed to know the minimum at each stage. Good luck. Yes tell them but explain it is a cancer that is very controllable and normally slow moving , and that you should be around for a good while yet.
User
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
User
You’re welcome Nick. You on a totally curative path at the moment and I so hope that happens for you. Yes you can’t hide the treatment nor diagnosis , but it can be a very long journey for most people. Once the initial treatment is complete ( whatever you decide upon ) you can then cherry pick the further info depending on the outcomes. My very best wishes to you all 👍
User
I'd tell them the truth: that you've got cancer, you'll be treated, and the treatment should cure you. No drama necessary.
Cheers,
Chris
User
Hi Nick,
Our children are older but still both live with us. It was a dread to have to tell them the news (especially at the time we had been told it had spread to bones)
We waited until we had a full diagnosis and then just sat them down and told them what we knew. Although we all got upset, I think we chose a good time when we were both feeling more positive about going forward. (Every day was different at this point) So I feel it was more the way we told them that helped, we were fairly upbeat and assured them that we would be doing everything possible to make sure their dad was going to be ok. I never used the word incurable (which we had been told) but treatable. We actually had a really lovely night together just chatting and answering anything that they wanted to know.
Best of luck. Things definitely look positive for you and I’m sure all will be fine.
User
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.
|
User
Elaine, thanks. That sounds like the best outcome to a difficult situation and you handled it well. Mine are old enough to sniff a rat if we sugar coat anything so basic facts and positivity is the way we’ll go.
all the best,
Nick
User
[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.
User
Thanks irun, that’s great advice. When my two aren’t arguing they seem to quite like each other so I hope they will be strong together. Just waiting for the PET then will tell them.
from a selfish point of view I’m hoping the serious stuff doesn’t start until after the Tavistock half marathon. Sounds like it can take a while to get back out running after a RP.
thanks again, I hope you have more years with your three.
cheers
Nick
User
Originally Posted by: Online Community MemberWell, after delays due to failing tracer and Covid in the lab that produces it, I had my PSMA PET scan and have had the results. In the time since having my MRI in Jan, my cancer spread to the seminal vesicles. So, I should be having surgery next Weds and, as my daughter’s GCSEs end this week, will be telling them this Friday evening.
Wish me luck!
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.
User
To my understanding they’ll just whip the SVs out whilst there. They’ll also remove any lymph nodes that need it. Their aim will be to remove anything questionable.
User
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.
User
Oh good, well atleast it will give you a week all together, that will hopefully help them. Enjoy your surfing 🏄♂️
With regards to the SV’s, does he mean if they have cancer he won’t bother to take your prostate out either?
I would have thought if he’s continuing with the removal of your prostate he might aswell take the SV’s on the off chance that he did get it all? If he doesn’t then I guess you’re in the same position as if he left them? Fingers crossed it will all go to plan anyway and not too much there.
Best of luck for tomorrow. I remember my stomach just churning over waiting to tell them. They did say they knew something wasn’t right though, just how we had been.
User
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
User
I think it is a semantic issue. The SVs are always removed during prostatectomy - it would be impossible to remove the prostate without them.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
The SVs start inside the prostate and extend outwards. I think what the surgeon is saying is that the scans suggest your cancer may be in the SVs outside as well as inside which means that surgical removal wouldn't get it all and you would need further RT/HT to deal with what is left behind.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
It doesn't matter if you have had one before - they still cut the tubes again to remove the prostate so the after effects could be very similar to those you have had before. John had a vasectomy 20 years before his RP but his scrotum post-RP was a sight to behold!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
Show Most Thanked Posts
User
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?
User
Thanks DW,
The nurse said those options weren’t right for me, so I’m taking that at face value for the moment.
tbh I find the thought of challenging medics difficult as they’re experts and I’m not!
Best wishes, Nick
User
Hi Nick , I’m 54 and six and a half years into my journey ( nearly 7 in fact ) ! I had surgery but was found to be T4 at surgery and am now incurable on hormone therapy with really only chemo and Enza left. At surgery my son ( my only child ) was 5 yrs old. He remembers visiting me in hospital. We just said I had an operation. Only in the last 3 yrs he has asked about all the appointments and scans etc , and about the palliative RT that I had ( we didn’t use that word ). My wife and I simply said that I’d had cancer and was just being regularly monitored !
Recently however they have been discussing cancer a lot at school and so began the deeper questions which were answered honestly and fairly and he seemed to accept them. He now knows I’ll die of cancer but that it is being held at bay for any amount of time by the medicine I’m on. I think he got bored of the conversation and got back to his PS4 😆. Children are extremely resilient. I’ve wanted to explain more over the years but my wife forbade it saying he only needed to know the minimum at each stage. Good luck. Yes tell them but explain it is a cancer that is very controllable and normally slow moving , and that you should be around for a good while yet.
User
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
User
You’re welcome Nick. You on a totally curative path at the moment and I so hope that happens for you. Yes you can’t hide the treatment nor diagnosis , but it can be a very long journey for most people. Once the initial treatment is complete ( whatever you decide upon ) you can then cherry pick the further info depending on the outcomes. My very best wishes to you all 👍
User
I'd tell them the truth: that you've got cancer, you'll be treated, and the treatment should cure you. No drama necessary.
Cheers,
Chris
User
Hi Nick,
Our children are older but still both live with us. It was a dread to have to tell them the news (especially at the time we had been told it had spread to bones)
We waited until we had a full diagnosis and then just sat them down and told them what we knew. Although we all got upset, I think we chose a good time when we were both feeling more positive about going forward. (Every day was different at this point) So I feel it was more the way we told them that helped, we were fairly upbeat and assured them that we would be doing everything possible to make sure their dad was going to be ok. I never used the word incurable (which we had been told) but treatable. We actually had a really lovely night together just chatting and answering anything that they wanted to know.
Best of luck. Things definitely look positive for you and I’m sure all will be fine.
User
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.
|
User
Thanks Chris, that sounds like a very sensible approach. I’m sure all will go to plan.
cheers
Nick
User
Elaine, thanks. That sounds like the best outcome to a difficult situation and you handled it well. Mine are old enough to sniff a rat if we sugar coat anything so basic facts and positivity is the way we’ll go.
all the best,
Nick
User
Thanks Dave. I’m doing exactly as you suggest - wait for the results of the PET then tell them. It’s just really unfortunate that my daughter will be poised to start her exams, but there’s little we can do about that other than support and reassure her. The last couple of years have been tough for kids but hopefully she’ll prove her resilience. The important thing is they both understand my treatment should cure it.
cheers
Nick
User
[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.
User
Andy, thank you. Yes, it sounds like we’re at different ends of the age spectrum with a similar problem!
that MacMillan bumph looks great, I’ll take a good look. The more I hear from people like you, the more I realise how much support is out there. I don’t know anyone personally who’s had a positive PC outcome so this site is incredibly helpful.
thanks again
Nick
User
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 .
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
User
Thanks irun, that’s great advice. When my two aren’t arguing they seem to quite like each other so I hope they will be strong together. Just waiting for the PET then will tell them.
from a selfish point of view I’m hoping the serious stuff doesn’t start until after the Tavistock half marathon. Sounds like it can take a while to get back out running after a RP.
thanks again, I hope you have more years with your three.
cheers
Nick
User
Well, after delays due to failing tracer and Covid in the lab that produces it, I had my PSMA PET scan and have had the results. In the time since having my MRI in Jan, my cancer spread to the seminal vesicles. So, I should be having surgery next Weds and, as my daughter’s GCSEs end this week, will be telling them this Friday evening.
Wish me luck!
User
Good luck with everything. Probably not the easiest conversation, but with the GCSE s understandable that it was delayed.
Let us know how things are going after the surgery.
|
User
Originally Posted by: Online Community MemberWell, after delays due to failing tracer and Covid in the lab that produces it, I had my PSMA PET scan and have had the results. In the time since having my MRI in Jan, my cancer spread to the seminal vesicles. So, I should be having surgery next Weds and, as my daughter’s GCSEs end this week, will be telling them this Friday evening.
Wish me luck!
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.
User
good point. I’m not sure and I don’t think the surgeon or the radiologists are either. The original MRI doesn’t show it in the SVs but that doesn’t mean it wasn’t there. So maybe it didn’t spread…maybe it did.
I guess the crunch point will be when he goes in to see to what extent it’s in the SVs. Fingers crossed not enough to prevent surgery.
thanks
Nick
User
To my understanding they’ll just whip the SVs out whilst there. They’ll also remove any lymph nodes that need it. Their aim will be to remove anything questionable.
User
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.
User
The surgeon said that if the SVs are full of cancer, he wouldn’t take them out because he couldn’t do it without leaving cancer behind. Therefore no point in doing the op. Hopefully they can be removed though.
I’m N0 and the PET didn’t pick up anything else so don’t think anything else needs to come out.
But I suppose I won’t know until I come round on the ward.
cheers
User
Thanks Elaine. Another change of plan, I’m telling them tomorrow night.
Also, Surgery now booked for the 11th, so we’re having a week away before then. I surf a lot with my son, so want to get some more waves in with him before I’m out of action for a while.
We’re hoping that the prospect of a week by the beach in Brittany will soften the blow a bit. Slightly hoping their teenage self absorption will work in our favour for once!
Thanks again
Nick
User
Oh good, well atleast it will give you a week all together, that will hopefully help them. Enjoy your surfing 🏄♂️
With regards to the SV’s, does he mean if they have cancer he won’t bother to take your prostate out either?
I would have thought if he’s continuing with the removal of your prostate he might aswell take the SV’s on the off chance that he did get it all? If he doesn’t then I guess you’re in the same position as if he left them? Fingers crossed it will all go to plan anyway and not too much there.
Best of luck for tomorrow. I remember my stomach just churning over waiting to tell them. They did say they knew something wasn’t right though, just how we had been.
User
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
User
I think it is a semantic issue. The SVs are always removed during prostatectomy - it would be impossible to remove the prostate without them.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Thanks Lyn. I think I need to find out more from the surgeon!
User
The SVs start inside the prostate and extend outwards. I think what the surgeon is saying is that the scans suggest your cancer may be in the SVs outside as well as inside which means that surgical removal wouldn't get it all and you would need further RT/HT to deal with what is left behind.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Thanks Lyn, that would make sense.
User
My surgery is on Monday 11th July and am taking the family away for a holiday next week. so I am prepared this week, do I need to take anything into hospital or have anything in particular at home ready for when I leave?
thanks all
User
Hi Nick,
Hope everything went as well as can be expected with the kids. Hope you have a great week away.
There are some great posts on here about how to prep for pre and post op, I’m not sure how to link them but maybe someone else will be able to do it.
I sent rob in with prune juice, cranberry juice and peppermint tea just to try and give him a head start. I’m sure the hospital will give you laxatives so make sure you take them religiously to hopefully help with initial constipation. Drink lots of water (around 3 litres per day) this will help the bowels but also minimise chance of infection. Rob had regular pain killers for probably the first week (often just paracetamol) whether he felt he needed them or not, so he never really felt any pain at all. Many have instilagel in case the end of the penis gets sore with the catheter. We got some but it wasn’t needed. Have some pads ready in case leakage with catheter in and maybe a sheet on the bed or I used some puppy pads (rob had no leakage with catheter in though). Make sure you are doing lots of pelvic floor exercises right up to it. It was suggested by someone on here to get Canterbury jogging bottoms that zip right up the side….useful for checking and emptying catheter. A bucket to put the catheter in a night (much easier than the stand provided)
Will let you know if I think of anything else but I’m sure others will add to it.
Good luck for the op and keep us posted with your progress 👍
User
Nick ,Ask the hospital for some instilagel or hydrocaine" in case" the catheter makes the eye of the penis sore. Try and avoid constipation, keeping mobile and keeping fluid intake up should help. Snug but not tight short type underwear helps keep the catheter from moving around.
A packet of your favourite biscuits or crisps are handy if you lose your appetite or want a midnight snack. A non fizzy drink makes a change from water. Ask the hospital for some ear plugs and an eye mask, you will still be disturbed for regular obs.
Get a couple of spare thigh straps so you can shower. Shower put a dry strap on the other leg and transfer the bag to the dry strap.
Have a look at this post.
https://community.prostatecanceruk.org/posts/t24485-Going-in-for-the-Operation---any-tips#post240314
Hope all goes well.
Thanks Chris
User
For hospital suggest ear buds or headphones. I found it useful to play random sleep music to take my mind off any post op pain and block out the usual hospital noises when trying to sleep. Also M&S have comfy cotton pyjama shorts which I found handy with the catheter.
Afterwards +1 for Canterbury track suit bottoms with the full length zip plus instilagel which I found I needed in the second week. Also my hospital gave me spare velco attachments for the catheter tube. You've got to be extra careful not to yank this after the op.
BTW am now 8 weeks post op and almost fully continent. Just 1-2 light pads a day and none at night. I found it improved frustratingly slowly for the first 6 weeks and then more quickly for the last 2.
Good luck with the op 👍
User
Thanks very much everyone, as always it’s useful stuff. I’ll try to channel my inner scout and be prepared!
Nick
User
Pants rather than boxer shorts - preferably one size larger than you usually wear. You have a vasectomy as part of the operation so scrotum may be quite swollen afterwards and pants provide a bit of support.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Thanks Lyn. I’ve already been the lucky recipient of not one but two vasectomies. So much fun I went back for another.
That’s one less thing to worry about.
N
User
It doesn't matter if you have had one before - they still cut the tubes again to remove the prostate so the after effects could be very similar to those you have had before. John had a vasectomy 20 years before his RP but his scrotum post-RP was a sight to behold!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Every time I think I know something about this it becomes apparent I know nothing. Thanks Lyn and everybody else again for your knowledge and support.
User
Thanks Bill. They know now and are fine, we think.
User
Latest is that we all caught Covid so I couldn’t go in on Monday for the op. Some debate about the permissible duration between Covid and a GA, plus the theatres are having a rejig with other resulting cancelled ops, so may not get a slot for another 5-7 weeks. Oh joy.
User
A quick update. I eventually had surgery on 14th Sept. For the whole period before and after surgery my kids have been great. They’ve been concerned and helpful but I think because we have them the facts and the likelihood of a successful outcome, they haven’t been too worried.
My son told me that yesterday, when we were walking across the beach together after he’d been surfing for three hours, he totally forgot I’d had surgery. It shows how quickly you get a good level of fitness back (enough to at least look normal again) and how the kids soon treat it as normal.
I hope soon that we’ll be able to forget about it, at least until the first post op PSA test (and when the incontinence starts to behave itself).