Intro-17yr old w/stg 4 colon cancer, need support, etc...

[robinettekelly]

Hello, I am happy to find the site! I am a friend and family member of a 17 yr old (yes, that is correct!) with familial colon cancer. She was diagnosed end of Aug., surgery in mid Sept., colon removed, and now she is going through chemo. It's such a long story, she is a wonderful person. She is my grand-daugthers' aunt (confusing...), and we have become very close. The family is very poor, and I have stepped in to be their sort of "research person, and note taker". I am also the one she turns to for answers, etc. We have heard from her surgeon that she is the youngest ever to have this type of colon cancer, unbelievable. I am hoping I have found a place that we can have lots of her questions answered...colonoscopy bag, chemo, what to tell her about her cancer (she really isn't aware of quite how sick she is, but 2 months into chemo, and the cancer is shrinking, so this is good news!) Mainly, I wanted to get familiar with the site, and introduce myself, and sort of find out how everything works. If anyone has any specifics they would like to share, I am so ready! Thanks so much, Robin

[Molly]

Robin-

First of all, I'm SO sorry to hear this...but know that you have come to the right place...and THE DOCTOR IS WRONG. One of our 2007 Colondar models was diagnosed at 13. Another at 16. She's not the youngest...and she's not alone! I was diagnosed on my 23rd birthday and my dcotor told me the same thing...that I was the youngest in the country.

If you would private message me with your address, I'd like to send you a Colondar...it's packed with info and especialy with inspiration. As for any questions, ask away. This is the place for it.

[cynnycal]

Heya,
Welcome to the site (and if she's up to it, please encourage your friend to come check it out herself)
Anywho, i was 25 when i was diagnosed with familial polyposis and also stage 3 rectal cancer.
that was in february of this year. all summer i did chemo and radiation, and in september i too had surgery.
now i'm doing more chemo (hopefully to be done by january or so...fingers crossed)
it sure is a heavy burden to take on, especially so young. (i look like i'm about 17...on a good day, so i get lots of people who don't know me shaking their head and being very sympathetic to me b/c they think i'm in high school and going through this!)

if you have any specific questions, go ahead and don't be afraid to ask. i'm pretty well versed in FAP, and everyone here is very very VERY well versed in colon cancer

[Edward]

Maybe the first order might be encouraging other family members to get checked.

[cynnycal]

jeez...i'd hope that has already been done.
any doc. that can say she's the youngest person with this type of cancer (which i agree, is NOT true...) should also know to have other people checked.
but if not, yes, everyone else should be tested.

hey molly...hm..i didn't get an offer of a free colonder when i first came to the site!!!
(i kid, i kid )

btw, not related to this thread, but i never got an email back for my request for an application?

[robinettekelly]

Thanks all...first of all, let me say that Wanda is a wonderful girl. She has familial Colon Cancer, so obviously, this does run in her family. She is my grand-daughter's aunt (on the other side), so she is actually family from the other side...this is how I know her. She has a brother who has suffered stage 3 testicular cancer, so this is not new for them.
They are not a family that use the Internet, but I have helped Wanda with a myspace site, and I hope to introduce Wanda to this site this weekend. I especially hope she can find help with her ostomy, and to meet young people with colon cancer. She obviously feels she is the only young person, so this will certainly help her. I'll let her know today about finding the site!

[cynnycal]

www.myspace.com/cynnycal

in case she wants to add...

[JeremiahMoore]

So sorry to hear about your situation. This is a very tough disease, especially at that age.

I recommend reading up as much as you can about the disease. The best thing you can do for her is give her information. And just to correct you on something (for educational purposes only), it is a colostomy bag, not a colonoscopy bag. Colonoscopy is most likely the procedure she went through to determine that she had cancer.

I mean no disrespect by correcting you, I just want to make sure you have the right information.

I wish you and her the best. If you need any information or need to know where to obtain good information please just give the word.

[cynnycal]

i'd like to add to that...especially if you give her free reign of your computer and internet this weekend (and she doesnt' normally have internet)
be KEENLY aware of what info she reads online.
and for yourself as well....be very very careful what you find online.

i'll tell you firsthand when i was first diagnosed i immediately got online and looked up Familial Polyposis and damn near gave myself a heartattack right there.

as it's been said on this board many times over, statistics are most often old and outdated, and don't really take into account certain things like our young age, etc. and of course....they're just numbers!

we're all different

[Harleyman]

well i really am sorry to hear what she is going through. I was Dsx 8 days after my 16th b-day back in 87 as Molly told you. Mine was stage 4 colorectal cancer and i have had a colostomy for 19 years now. living with it has actually belive it or not made things easier in certain areas. I know everything there is to know about what you are going through and what is going to come. i also know that shortly after i was DSx and had my surgery about a year later another young lady was Dsx with stage 2 colon cancer. she was 17. from what i understand she is now married and has 2 children. so dont worry, God is with you in this time. as he was for me. I pray for your recovery as well as for your family in what they are going through. if you feel like contacting me my email is harleyman1971@msn.com dont let the name scare you. im a teddy bear. Molly and the rest of the Colon Club Members will back that up. I know Molly Offered you a colonder but if you want a signed copy from me just let me know. ill get it right out, god Bless. Darrick Price, Corpus Christi, Tx

[Harleyman]

http://eagle-eyes71.spaces.live.com/ go here and check my space out.

[robinettekelly]

Thanks to everyone for your support, and please feel free to correct me anytime I make a mistake, I do get in a hurry sometimes, and goof up...and also am learning terminology as I go, please take no offense. I work online all day during the week, so I have time to do a bit of research, so I actually have been researching this the best I can until now, and understand the comments. I am use to the statistics, but finding this site, I feel is going to change everything! Until now, I do feel it has just been a bunch of numbers, and info.

I do want to share a little bit more about Wanda. Even though she is just now 18, she is quite unique. she comes from an unstable homelife. She is also just a bit on the remedial side, so turning over the computer to her would not be a possibility. I would actually step her through anything we did online, and read it to her, so we are safe there. She really doesn't understand what "Stage IV" means as far as her diagnosis...I could go on and on, and you could get a picture of my delima and why I am so relieved to have found this site.

I have emailed Molly and filled her in a bit more, and she has spoken highly of many of you. Basically, I am just amazed to find that Wanda is "NOT" the youngest in the country, she doesn't necessarily have a death sentence hanging over her head, AND there are other options out there for her! Sounds like you all are an amazing group of people! I am extremely impressed at what I've seen so far. You all are gonna hear a lot from me, I hope you all don't mind, and I will also introduce you to Wanda. Please bare with me everyone, this is the place I've been looking for, I need to vent, share, cry, laugh, scream, talk...THANKS!
Robin

[Harleyman]

feel free to do all the above. we understand

[Lifes2short]

I'm so sorry for what she's going through. She is luck to have you. This is a scary disease. As others have said, be careful of what you learn on the internet. I spent a lot of time looking at survival stats for stage IV cancer victims after being diagnosed. The stats are grim and scary. They are also outdated. People are living longer with this disease. Some even survive, as you have already seen from the above posters.

You might want to check out uoaa.org for colostomy info. Lots of great info on that site and some very knowledgeable and supportive people. I believe theres even an online forum for young people with ostomies. You can get colostomy product samples by visiting the major suppliers online. Just google Hollister, Convatec, Cymed Micro Skin... to get the main websites. Then you can browse their products and ask for samples. I found the two piece disposable systems work best for me, especially at the beginning. I personally like the Micro Skin products. Although I can't wear them now because my chemo drugs have made me sensitive to the adhesive they use.

Good luck. There's lots of support here.

[MissKim]

I am also very sorry to hear about what you are going through. When I was dx in June 2003 (stage IV cc -- mets to the right ovary), I was 38 years old and the doctors of U of Utah Hospital kept saying that they just didn't see this in someone my age. Well, that made me feel like a freak. Young people do get this disease and I didn't realize how many people were like me until I came to this site. I discovered this site in Oct. 2006 and wished that I had found it earlier. The people who contribute to this are absolutely amazing. I have learned alot. Best wishes to you and Wanda. She is lucky to have you.

Miss Kim