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  • Colon Cancer at 21??

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    Old 10-12-2004, 10:22 AM   #1
    FAPintheFamily
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    Unhappy Colon Cancer at 21??

    I am waiting - three weeks out - to have my third colonscopy and it is terrifying me. . .
    Here is a bit of background, maybe someone can help me through the waiting because I am on pins and needles.

    I believe I have colon cancer. Two aunts have died young from undiagnosed colon cancer, three cousins have have their colons removed at a very early age(all under 21), my mom and her four sisters have been diagnosed with FAP and or colon cancer. Of my mom and two surviving siblings, they have all had their colongs removed. My mother has gone through a horrendous amount of surgeries and such with her FAP and cancer. My doctor has told me over and over again that I need my colon removed, but cancer was never detected... I figured I was safe. I do not have insurance so this is coming out of pocket... but all my symptoms, plus knowing I have rapid growing polyps.... leads me to think I have cancer. I have this weird intuition that... makes me believe I have colon cancer. And I'm scared. I know there are many things out there to help, to remove the cancer... but I'm single. Twenty one. Starting college in Jan. and... well, I want my colon. I don't want a bag... I know, I'm being vane... but I just don't want to have that bag on the outside. I'm just scared with this all coming out, plus my mother is in the hospital at the moment getting her J-pouch removed. . . I just needed to get this out - and I can't talk to my family right now, because we're stressed out enough with my mother, I don't want to add to that.

    Any words of encouragement? I could use them.

    Thanks. Katie Mae.

     
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    Old 10-12-2004, 04:52 PM   #2
    CancerDad
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    Re: Colon Cancer at 21??

    Katie Mae:

    Have you had genetic testing for FAP and tested positive? I'm a little confused, you say you have had no symptoms, but that the Drs want to remove your colon. Then you mention polyps.-- I know you don't have insurance, but you can always get state aid... are you from the US?

    I know the family history doesn't look good, but try not to freak out about it until you have something to freak out about. That alone could make you sick. Concentrate on your Mom and helping her out, maybe helping her will take your mind off you until your Gastro appointment (which I would book ASAP for a colonoscopy). Hang in there!

    Regards,
    CancerDad

     
    Old 10-13-2004, 10:18 AM   #3
    FAPintheFamily
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    Re: Colon Cancer at 21??

    Sorry - let me clarify. I'm a little stressed right now.

    I was diagnosed by colonscopy at about fifteen with FAP - aggressive polyp growth as well. I have freckles in my irises and eyes, calcium deposits on my bones, blood in my stool, cramping, fatigue, pain(left side of my stomach - back and front - few inches from my belly button), gas, mucus in my stool, nausea, feeling of...like I can't get my stool to be completely removed at a bowel movement.

    I have an appointment for a colonscopy with a new doctor (mine just became chief of surgery and is booked through until Dec.) on Monday - 10/18. This new doctor and my specialist are within the same office, so atleast my specialist will know what is happening(plus he is the one taking care of my mother). Mom isn't doing the best right now and I'm worried about her, as well as my own health. Dr. Madoff(my specialist) has been trying to get me to go in for removal of my colon since my first colonscopy, but I'm procrastinating because of the fear. Friends and family have pushed this on me, and I am greatful. Just terrified. Bleh. I feel like I shouldn't be so much of a drama queen.

    With my history, family history and symptoms plus this weird feeling of a good intuition . . . I'm scared. Is all. That's it. I just needed to get this out there, hopefully finding someone who can relate. Thanks.


    PS. Yes, I am in the U.S. I've been denied any insurance right now because I either make too much money or have the notes "NEED SURGERY" in my files. Denied. Denied. Denied. As soon as I start college I will be able to go underneath my father's insurance. That is what I had before I turned eighteen.

    Last edited by FAPintheFamily; 10-13-2004 at 10:20 AM.

     
    Old 10-13-2004, 11:10 AM   #4
    lilsunshine46
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    Re: Colon Cancer at 21??

    By freckles in your irises do you mean you have nf1? neurofibromatosis as well as Fap?
    Bonnie

     
    Old 10-13-2004, 11:16 AM   #5
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    Re: Colon Cancer at 21??

    Katie Mae:

    First off-- I'm sorry to hear of all your troubles. That must be a really tough thing to go through at 21. I am 32 and was dx with stage 3c rectal ca at 31-- began bleeding at 28. My gastro is certain I have HNPCC-- my grandfather died of rectal ca., my brother just had 5 polyps removed-- one strong pre-cancerous. I worry about how this affects my wife (emotionally) and 2 kids(emotionally and genetically.) I am by the way going thru genetic screening. So-- different stage of worry, but worry nonetheless.

    Anyway, I'm glad your friends are pushing you. You are allowed to be a drama queen, this IS a life changing step. But, a bag is NOT the end of the world. So many young people have colostomies/iliostomies you wouldn't believe it. [ removed ] Anyway, I had an iliostomy for 4 1/2 months-- it was not bad at all once I got used to it. In fact I was reversed in May, after rectal transection 4 1/2 months previously, and wish I had stuck with the bag. Better than diapers and incontinence, etc. There are others on this board with bags who can speak about having one, [ removed ] But I think you just need encouragement, you know what you need to do.

    As far as insurance goes... as long as you are enrolled (on most plans) as half time, you are covered... even if you had to drop the classes for some reason, nobody would know the better;-) And even if you can't get insurance, there are special funds at hospitals to take care of the bills... you just talk to the social worker when you are there.

    Best of luck with your mom. My prayers are with her. And best of luck to you. Please keep us posted.
    Warm Regards,
    CancerDad

    Last edited by moderator2; 10-13-2004 at 01:14 PM. Reason: do not post any kind of information to find websites not allowed to be posted.

     
    Old 10-13-2004, 11:43 AM   #6
    FAPintheFamily
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    Re: Colon Cancer at 21??

    Quote:
    Originally Posted by Bhuneke
    By freckles in your irises do you mean you have nf1? neurofibromatosis as well as Fap?
    Bonnie


    ...Uhm. I haven't been diagnosed with nf1. Or neurofibromatosis. What is this? Should I be looking into that too? When the eye doctor found the freckles at a young age, that is what set my mom into a tissy about getting me checked for FAP. Gardner's Syndrome. Now I'm looking into what that nf1 is.


    Thank you, CancerDad. It helps to know that I'm not being abnormal in my worrying. I'll check into the ill./col. bags and young adults. I do appreciate this!!

     
    Old 10-13-2004, 12:02 PM   #7
    FAPintheFamily
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    Re: Colon Cancer at 21??

    What is nf1? I haven't had a chance to look it up yet. I haven't been diagnosed with it. But...

    I have complex migraines, migraines, freckles-knobs in all in my eyes-irises, corneas(sp). Weakness, speech problems, numbness, dizziness...and such. I just assumed it was because of my complex migraines.

     
    Old 10-13-2004, 12:15 PM   #8
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    Re: Colon Cancer at 21??

    Look up Neurofibromatosis and lisch nodules"freckles " on the irises. Sorry I looked up Gardners syndrome, it is a fibromatosis and does have a retina pigmentation disorder but not like NF1 , Sorry to scare you like that. Not that NF! is so scary either{can be but usually isn't}
    Good luck with your colonoscopy anyway. I have had the precancerous polyps and due for another colonoscopy in about 6 months. As most will tell you the drink is the hardest part as you already know from your 1st test. I will pray that the outcome is good. 21 is an age to be able to enjoy life and all that comes with it not have to worry about everything else. I hope that your family survives all that is before them.
    Take care.

    Last edited by lilsunshine46; 10-13-2004 at 12:28 PM.

     
    Old 10-13-2004, 12:26 PM   #9
    FAPintheFamily
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    Re: Colon Cancer at 21??

    And now that I have... it is scary.

    I had a cyst removed from the end of a nerve shaft a little over three years ago. And the "freckles" have been there forever. And... for the coloring part - I have what my parents call a "Stork's Bite" birth mark. It is large darker pigmented skin in the shape of a weird circle on the back of my neck. I also have two other "birthmarks" on my legs. Do I just go into the doctor and ask if I can be tested for NF-1? or... Help!

     
    Old 10-14-2004, 06:49 AM   #10
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    Re: Colon Cancer at 21??

    my brother is 57 years old and tomorrow he goes under the knife at 3pm to remove the mass in his rectum there is only a 50/50 chance it can be saved then they will do a resection of the colon dr has prepared him to the possibility of a permanent colostomy. he has a 8 cm mass in the rectum ....................... thank you!!
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    Old 10-14-2004, 10:50 AM   #11
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    Re: Colon Cancer at 21??

    To delrae -

    Good luck to your brother! It is amazing what they can do with colon cancer and bags and pouches! I hope the out come is good, but I believe you're only given what you can handle. So best of luck and my thoughts are with you.
    I have been prepared for a colostomy and even complete illeostomy at sixteen... so I know how that feels. It's scary and hard to comprehend, but in the end... I'd rather be alive and well then suffering or worst. Let us know how it goes with your brother.

     
    Old 10-14-2004, 02:39 PM   #12
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    Re: Colon Cancer at 21??

    thanks so very much for your support i know that he is in good hands with the surgeon
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    Old 10-14-2004, 07:16 PM   #13
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    Re: Colon Cancer at 21??

    Fap and Delrae, best of luck to you and your families. Fap, if you are going to the doctors I think you are, they are the best in the area. Didn't Dr. Madhoff leave private practice?

     
    Old 10-14-2004, 08:04 PM   #14
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    Re: Colon Cancer at 21??

    I have a colostomy. Ileostomates have some different things to take care of than a colostomate though the pouch is the same.

    The colostomy pouch is not bad at all once you get used to it. Now that is easy for me to say though, I was more than twice as old as you when I had my surgery. I don't know how I would have reacted when I was in my twenties.

    However if the alternative is going to be constant worry, numerous colonoscopies and the spectre of death hanging over you perhaps you should have it done. It might very well improve your quality of life. In my case it made sure I was still alive.

    Last edited by moderator2; 10-14-2004 at 08:18 PM.

     
    Old 10-18-2004, 12:46 PM   #15
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    Re: Colon Cancer at 21??

    God bless ya FAP. Im so glad they know whats going on with you early. I can't imagine they would have ever caught it if not for your family history.
    Thats so great that you know so far ahead of time whats going on. I know it must be scarry and such a young person wouldnt want to have to wear a bag, but thats really such a small price to pay for your life when you really think about it. God bless all you guys going through that! Your all in my prayers, and i know you'll be just fine...

     
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