How to tell your 12 year old you only have 2-5 years left

[Lori032969]

I was diagnosed with stage 4 colon cancer in 2011. They told me I have 2-5 years. I will never go into remission. I have a 11 year old boy who thinks I hang the moon and the stars. I am essentially his world. My husband thinks I should tell him I only have 2-5 years, but I am afraid if I do he will stop doing things he wants to do and put his life on hold to stay beside me every day. I also do not want that to be the only thing he thinks about for the next 2-5 years "is this the day my mom is going to die?". When should I tell him? When the cancer has progressed so far that I have no choice or now and risk traumatizing him? I am one of those people who wants to fix it for everyone else and make it easier on everyone else, but am finding out there is no real way to help do that. So how do I minimize the damage? I have read some of the other posts and I think they are wonderful ideas. I am hoping for more helpful insight into this dilemma. Thanks.

[allmymarbles]

If it has not metastasized there could be a surgical cure

[Annie_777]

Dear Lori, I am 35y with 5y and 10y boys at home.  When I was diagnosed with rectal cancer and before the staging results come out, I thought about the same thing.  How am I going to tell the kids?  I ended up telling them that mommy got sick, and doctors will try their best to make mommy feel better. All I want them to know is that, some days will be good, some days will be bad, no one can tell or predict. We live through it day by day, and we stay strong and together.  We support and take care of each other and we don't waste our time fighting. We facetime each other twice a day when I'm in hospital.  I show them my surgical cuts.  When they visit me in hospital, I walk them around and I show them the chemo carts.  I am lucky that my cancer is cured.  But even if I was stage 4, I still would never tell my kids that I have 2-5 years left.  I'd rather give it a more positive twist, and let them know that mommy's getting sicker and wants to male everyday count starting from now.  Ask them to smile more in front of you, share more of stories in their life with you... Best of luck!  Merry Christmas!!!

[Terrytag]

When my mother was sick with colon cancer I asked her Dr when was she going to die? He yelled at me and said How can you ask me that ? Don't you know only GOD knows When your going to die,only GOD...I believed him.

[lissavalenz]

I agree.  See another doctor and if that one tells you the same thing, then find another until you get one that will fight for your life with you instead of throwing it away.  My father is an eight year cancer survivor and still counting.  He was diagnosed with a very large brain tumor that took his entire right frontal lobe and pushed through the midline of the brain and through major blood vessels and branching down the midline with a tentacle.  His debulking surgery was only able to get 80% of the tumor due to the blood vessel involvement and going into the other side of the brain.  He was given grim news after his pathology came back.  His tumor was a oligodendroastrocytoma, basically two different cancers blended into one tumor and it was a stage 3.  Brain cancer is very difficult to treat due to the blood/brain barrier.  They gave him 3 months without treatment and 6 months with treatment.  They told him if treatment had too many side effects and made him feel too poorly to just not bother with it because they would not be able to cure nor significantly prolong his life.  He goes to see his surgeon and oncologist once a year for his annual MRI to make sure that there is no new growth.  They still can't believe how wrong they were.  Just because they are doctors does not mean that  they know how long any person has left to live.

I think that your son will take the news much easier knowing that you are doing everything in your power to fight this disease no matter who tells you it's hopeless.  Hopeless is not a word that fits into a cancer survivors vocabulary.  

Good luck to you.  I hope you win your fight.

[nyc lady]

wooooo.....are you seeing a doctor or a fortune teller?????  How does the doctor know how much time you have left, also, in this day and age, even stage IV colon cancer can have positive outcomes.  My first stop would be a new doctor.

Your son needs to know that you are sick, but, if you are not really showing any signs yet, will he understand? Include in your treatments, talk about you feel, the truth....let him know that maybe this illness won't go away, but, right now, there is plenty of time to have a life together!!!! I would not put any times on anything, no one, not even the greatest doctor in the world knows how much time any of us have left.  Please do not give up, keep fighting.....stage IV cancer, of any kind can be treated and sometimes with very positive results.  

Please consider another doctor.

[ireneo]

That is still a fair amount of time. I'm not sure I would mention the death aspect just yet. But I do think it's important that he understands that you're sick, that the doctors are working hard to help you (I didn't say cure) and that it's quite likely you will slow down and  not be able to do all the things you used to do or want to do. Let him adjust to the changing you. Then when you get a better idea of how things are going, add information as you go. He won't understand all the medical jargon but he can understand the journey.

When time gets closer, then mention the fact that your body is unable to fight back against the disease. I hear there are books out about dying geared to children. I know I have to look at those for our grandchildren since a close family member has about a year to live. I'm going to read them first, see if I like them. I don't want a book that talks about "going to sleep" or "God taking the person to heaven."  Those can trigger fear (don't want to go to sleep" or anger (why is God taking you away from me?). See what is comfortable for you.

For now it's important to make memories, enjoy the moments, show him that life is still worth living even when it's shorter than expected. You want him to remember the good moments you had together. Those will help with the grieving. Some people even write letters, make videos for the kids to enjoy after the parent is gone.