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.

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

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. :dizzy:


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.

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

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. :confused:

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. :angel:
Warm Regards,
CancerDad

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!!

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.

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.

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!

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!!

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.

thanks so very much for your support i know that he is in good hands with the surgeon

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?

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.

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...

up date my brother had the rectal mass removed it was 8 cm cancer and they also removed the entire colon and prostate. thanks for being there... he says he feels better than he has in years ...still waiting on pathology

delrae,
I'll say a prayer for your brother. Im so glad they found it and he's getting treated for it. God bless you and your family. I'm praying everything works out perfect for you all.

Glad he is feeling better. Hope his recovery goes smoothly and the path'y report is good too.

thank you all so musch all you replys are so helpful no pathology reports yet i will keep you all posted

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?


He's become Chief of Surgery at the U of M... and he is considering leaving surgery all together, but... He hasn't exactly left private practice, I believe he just isn't taking in new patients. . . That is I believe, but I am unsure.

He's been well to us through all this - but I'm looking for more options for my mother and myself.

A sigh of relief for you, Delrae. Hope all goes well in the upcoming days for you and him.


And for me and my colonscopy - Got a few polyps removed that don't look good. Lots have grown since my last check up. Waiting on the results of the biopsy(7 to 10 days. UGH!! I am impatient with this.)... I'll let you know what they find out. Doctor wants my colon now though.

What kind of food do you eat, FAPintheFamily?

Best of luck with you and your mom. I will pray for both of you.

well we probably won't know the results of the pathology until we go for the post op visit with the dr next week my brother is suppose to be released tomorrow from the hospital if all goes well. now i know that when the removed the colon and rectum they also took the prostate so make sure you ask the dr if they do this with you since you ar so young im not sure they will hopefully ythat wont have to happen but i understand that since its so close to the restum that when they remove the rectum they also take the prostate becasue thats the frist organ that can be invaded by cancer... good luck

Hey there, i too am sorry to have to hear all this stuff you are going thru, its just too much for one person, but you know the ole saying, "if it doesnt kill you, it will make you stronger!".
My dad has an Ileostomy on right now, its temporary but boy is he depressed. He keeps starring at it and thinking, what the heck?? Anyways, this is his second surgery in 3 years to remove a cancerous tumor from his bowel ........and the bag is just to let his insides heal. I am sorry that at age 21 you are experiencing all this horror, but you should always get a second opinion and then proceed to get a 3rd if you're not comfortable with the answers. I too know what its like to be worried, BOTH my parents had cancer-related surgeries in the same year , with NO history of cancer in either families.

What doods do I eat?

Hm. Well, I am not exactly the healthiest of eaters. I do eat the reccommended veggies and fruits - supposed to help with the digesting and especially with FAP, but broccolli and lettuce always irritate my system more, so I don't eat much of it. I try to keep my fiber up, as well as my calcium intake since they're both supposed to help. Why do you ask?

Good News - No cancer. My colon looks... okay. Biopsies came back looking good. No cancer. That's all I heard. I have to wait until Wednesday to speak to my doctor to find out why I'm having my symptoms. But... question - If I'm colon looks "fine for having FAP"... why am I having the pain, pressure, tenderness, eating away feeling in my left side? I should be over joyed... but I'm crying. Hehe. I don't get this!

What doods do I eat?

Hm. Well, I am not exactly the healthiest of eaters. I do eat the reccommended veggies and fruits - supposed to help with the digesting and especially with FAP, but broccolli and lettuce always irritate my system more, so I don't eat much of it. I try to keep my fiber up, as well as my calcium intake since they're both supposed to help. Why do you ask?

I am just curious. I heard most people with colon problems eat a lot of rare steaks and not enough fiber. My aunt said that eating red meat and a bag of chips everyday has taken its tull on her colon. Now she can only eat mashed carrots and potatoes until she can stomach other foods.

not necessarily so some of it is inherited as my brother has now had his colon and rectum remove i can tell you we are not steak eaters in my family in fact we eat only red meat 1-2 a week.so i think that concent is not true for all peolpe.

not necessarily so some of it is inherited as my brother has now had his colon and rectum remove i can tell you we are not steak eaters in my family in fact we eat only red meat 1-2 a week.so i think that concent is not true for all peolpe.

Hmm... so if I eat really healthy, but Colon Cancer runs in my family, I still have a good chance of getting it also? I have a lot of relatives who have it, have died from it,or are about to get it, and all of them eat/ate junk. My dad's mom died from Colon Cancer. Ever since, all he has been doing is eating really healthy, and he has never had a Colon problem.

One day I am not worried, and the next I get pretty scared. I hope eating right is enough to prevent Colon Cancer.

Note: If you ever get constipated, Flax Seed Oil works really well.

Btw, I never eat red meat.

[QUOTE=Hawk-]Hmm... so if I eat really healthy, but Colon Cancer runs in my family, I still have a good chance of getting it also?


If you have it in your family's genetics - it's best to keep a keen eye on things. Especially something as harsh as colon cancer. If you were a friend of mine, I would be pushing to get things checked out ... and yearly if things look abnormal.

Eat what you'd like. If you have it in your genes already, there isn't any kind of diet that will prevent you from getting it. Yes, it may stunt it... or prolong not getting it, but if it's in the genes. It's in the genes.

I don't eat red meat much. Possibly ... twice a week, if that. I eat just about anything. I know I have FAP, I know it will - 98% chance - growing into cancer... and yet, I will eat what I want because I already know what to look for and I'm going to be happy eating what I want while I can enjoy things. Eh.

Don't matter what you eat. I believe - if you've got it in the genes already.

But is it really considered to be in the GENES if no one in your family has ever developed it before until now?? My dad just had a cancerous tumour removed and no one in our family has ever had cancer before that! I dont get it? I strongly believe that our toxic environment and animal fats have a heck of alot to do with this disease.
My father enjoyed all foods, he eats salads, fruits, vegetables, meats, pastas, fish, you name it, my dad eats it. He has always been slender and constantly physically active. Not much of a beer/alcohol drinker, and doesnt smoke. How does one explain this?
I cannot wait for the day when we all hear that someone has finally found a cure for all cancers!!

Well, my mom was vegetarian for 30+ years and ate very healthy, exercised, took vitamins everyday and she got rectal cancer. Diet must have not much to do with it. No form of any cancer runs in the family either. It was a fluke I guess....no one is safe, really. It can happen to anybody. I think stress is a big factor though....that is the only thing my mom had problems with, handling stress.

No one is sure exactly what causes cancer. Certain things will increase or decrease the probability that you will get it. Obviously smoking increases it for certain cancers while exercise and good diet decreases it for some cancers. My Mom-in-law is 83 and has smoked for 60 years with no related health problems yet her husband smoked a pipe and died of throat cancer in his 50's.

This is why continued research is needed.

Yes,and thats why i /my family donates regularly to cancer charities.
You know, i have an ex-friend that believes there is already a cure for cancer and that doctors/the government is 'holding it'. What a dumb thing to belive! Sorry, dont mean to be nasty but come on people, why would they let so many people suffer for years and die.............i dont know. She is even against donating to cancer charities cause she says they dont use it for research.

Well, smartcookie, I have heard of stories where people found possible cures for cancer and many other things, but the FDA came into their working environment and shut them up pretty quickly.
Pharmaceutical companies make billions of dollars every year from Cancer patients who buy medications.

On the other hand, this could all be one huge crock and these people could be making these stories up.

I am afraid that this conspiracy theory is actually pretty old. At it's worst it contends that the entire medical establishment including pharmacuetical, research and your local G.P. are all in on it and actually making you sick and/or keeping you sick in order to make money. Of course this would only work in places that have non-social medicine systems but that doesn't stop the true believers.

Jaydees, i know, its pretty sad to think someone thinks like that, but what can you do?
I know i keep donating and hope every day there will be an annoucement that they have a CURE!
We cannot dwell on those people, its unfortunate they think that way but, thats the way they feel.

I suggest you get online, go to the bookstore, the library, and research everything about colon cancer, and cancer in general. Research articles and books online, medical websites, alternative healing websites, colon cancer websites. Check out Dr. Andrew Weil's books, and anti-cancer diets. I've heard that they've made some major breakthroughs in colon cancer in the last several years. You might not know of something that's available right now (that wasn't available for your family members). There may be a treatment out there that you can live with, physically and emotionally. Get aggressive!!!!!

Don't let a surgeon tell you what to do. It's always your choice. They told me a long time ago that I'd probably need a hysterectomy. I didn't have one, and I'm OK (it's not cancer, though). BUt having such a major organ removed? I'd fight it.

I feel for you and my prayers are with you.
Your symptoms sound like those of crohn's disease or IBS (irritable bowel syndrome)?
Earlier this year my daughter was diagnosed with crohns disease and it was horrible being in and out of the hospital until they were finally able to diagnose her.
Today she is doing much better.

In good health

sounds like Wilson's Disease. It presents with brown spots in the iris/cornea and has many neurological symptoms as well, e.g., like the ones you mentioned below. Sometimes it can be mistaken for Multiple sclerosis. The disease is caused by the body's inability to remove copper from the blood stream. It is treatable with a chelating (key-lating) agent that binds to the copper and you pass it in your urine. My sister was recently diagnosed with this and it is definitely treatable and not life threatening if treated properly. I know this post is almost a year old, but I am hoping you might receive this thread via email or you happen to check back.

As far as the colostomy, hang in there. My girlfriend has Crohn's and may need to have her colon removed. Take care!



QUOTE=FAPintheFamily]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.[/QUOTE]