Hi Folks,

My wife and I can benefit from your wisdom and experience.
I am the 51 y.o. Dad of a 12 y.o. daughter and 8 y.o. son who are happy, bright, innocent and sensitive.
We like to be open, honest and relaxed with our kids; we've also both done enough professional work in child welfare and mental health to know that a sense of safety and security is one of the most precious and foundational gifts all parents can give their kids.
Since my initial, "routine" colonoscopy in late August, until now, our kids know that Dad has had a few Dr. appointments, they've been aware of my "prep" nights before subsequent scopes, and they know that we are all paying attention to what we eat so we can keep Dad and everyone healthy. Also, when my APC coli tgenetic est came back negative early this year, we did all go out to dinner to celebrate, sharing a general message that concern about passing a health condition down to our kids had been mostly put to rest. (We have felt no need to share any additional information with them.)

I've been diagnosed with familial polyposis due to an MYH gene mutation, and the GI specialist at UNC is currently recommending me for colectomy - most likely proctocolectomy with a J-Pouch. Next Friday I'll have my 4th scope, plus an upper GI scope, then a consultation with the surgeon and my GI doc. I assume we will discuss both the type of surgery I should have, as well as a timeframe. Before now my polyps have been tubular and tubulovillous adenomas, no specimens have been villous or carcinomous.

When my wife and I grew up, "cancer" was about the scariest word one could utter. Colon cancer, though serious, does not nearly have that same "doomsday" connotation today. In my case, for example, colon cancer is about 90-98% preventable, due to early detection; and if cancer does emerge, it is most often very treatable.

We do not want to upset the sense of safety and security my kids enjoy. We do not want to compromise the honesty and openness within our family. We do not want to overburden ou children with more information than their bright little minds can handle. And we do not want to inadvertently create a taboo or contribute to development of an unwarranted sense of hopelessness or even shame about my still entirely invisible disease.

So you can guess our question:
Please share your experience and guidance about how much of what we should share with these kids, when, depending on the details we might gain from my next visit with the medical professionals a week from now. Thanks, in advance, for your contributions!

~~ Frank & Kev ~~

Hi Frank,

You may want to contact Christine and Ricardo because Ricardo just had surgery for FAP, and he and Christine have 3 kids. They might be a good contact for you. You can see his story here and touch base:

http://www.jpouch.net/2009/05/...ory-living-with-fap/

Mark

Hi Frank,

I had my proctocolectomy and J pouch surgery 7 months ago. I have been chasing cancer for 4 1/2 years. I am hnpcc positive. I had 3 surgeries prior, and was having colonoscopys every 3 months and could no longer keep up with the growths. My husband and I have 3 children. They were 13, 14 and 17 at the onset of all this. We have been fairly open with them, explaining in general what is to happen in way of surgery and recovery time. We have found that if you say too little their imaginations go wild, or they overhear a conversation to someone else and think you are hiding things from them. That said, we don't share every hairy detail. Just enough to give them some control and then wait for their questions. Kind of that whole "birds and bees" deal. Age appropriate, let them lead the conversation with just enough info. It's delicate. I think the main thing is to keep a positive attitude in front of them. "Yes, it hurts but that is normal and it will pass very soon". Find ways to get them to come around you during recovery, sometimes they are afraid of hurting you. Our kids did NOT like coming to the hospital, but had no problem once I was home. I hope this helps you in some way. Good luck on your surgery, and a swift recovery!!

Larissa

Larissa, Mark & Megan - Thanks for the input. We sure have found Ricardo and Christine's story to be compelling. We've been talking to our kids the past couple of days as Dad starts to modify his diet and get ready for all the big tests and medical appointments on Friday - keeping things positive and optimistic, but also trying to be realistic about the expected course of recovery. Our kids seem to be taking things in well so far. Let's hope we handle things so well .
~~ Frank & Keverly ~~

Hi Frank and Keverly

I was diagnosed with FAP at 22 although mine is an APC mutation. My children were 1 and 4 at the time so talking to them was very simplistic and they didn't really understand what was going on. I'm glad your children seem to be taking it in stride.

I had a total proctocolectomy and I now have a j pouch. My last surgery was in 2006 so if you have any questions you're more than welcome to ask. Good luck and God bless!

Best wishes
Lisa

Honesty is usually the best policy for kids, without going into too many details unless they ask...also if you can, scheduel some alone time with each kid...in a priveledged environment like their favoirte park or ice cream place...so that they can talk to you privately without the interfearance of the others regards. It is amazing what they can ask or say when no one 'else' is looking on...also, do they have a neutral 'third' adult to talk with? A grandparent or favorite aunt or Godparent? Someone that they trust to tell their secrets and fears to when they can't tell mommy or daddy???
There must also be someone to tell them that they did not cause this by not being 'good' or because they did or didn't do something...kids have a really sharp guilt complex and tend to pull the responsibility over to themselves...
Grades can slip and anger can pop up to the surface at the strangest moments...it is their way of dealing with the 'unknown' and the fear that they feel eminating from you.
If I had one really good piece of advice to give it would be....don't forget to laugh. LOng and hard and often. They need it. Jokes and funny movies and silly stuff..laughter puts the normal back into life.
Keep us posted on how it is going.
sharon

Personally, an 8 yr old doesn't think well in abstracts, and a 12 yr old is just gaining the capability, so I wouldn't spend much time on the fact that FAP can lead to cancer. If you are, as of yet, cancer free, then I would just focus on the fact that your colon doesn't work as it should, and could make you sick if you kept it, so it needs to come out, kind of like some people have to get rid of an appendix or their tonsils. Then- focus the conversation on what the surgery is and what it does, and what they can expect. (They don't need details about continence, etc... but should know about your stoma, how it will work and all that)

Generally speaking, children take their cue from you, if you are able to talk confidently about the coming surgery, not be embarrassed (even if you set the tone that this is private) and laugh, they will do the same.

Best of luck!

i'm useing my daughters email,just wanted to say my husband has fap we found out about it in 2001 didn't now it was in the family we only new that his dad died at 29 with cancer , and it was from a factory e worked at but when my husband came down with colon cancer the hosiptal said it was so bad {take a monkeys tail where there was a hair that was a polp i told his mom about it she told me that ,thats how his dad died that the hosiptal said have your kids tested for fap she didn't want to now if her kids had it , well sept.2001 he was getting really sick you now men don't go to doctors ,we were told by doctors to have are kids tested out of all are kids 2 have it his oldest son is living with his mom and isn't going to do anything and are oldest daughter has fap too we're doing something about her it just gets over wellming at times no one to talk to help i cry alot ,mom and wife to faps patents