Gardner Syndrome

[July181998]

Hi Everyone,

Two weeks ago, I had what the MRI thought to be a malignant giant cell tumor removed from my foot. After sending the tissue to two pathologist, I found out today that they removed a benign tumor called desmoind fibroysis (I think I spelled it right). Well I have what is called Gardner Syndrome. Gardner Syndrome is rare, but its normally found in patients that have FAP, AFAP or HPNCC. Desmoind Fibroysis has a 50% recurrence rate. Since I have AFAP, my primary doctor has advised me to have my colon removed because of pass colon polyps. I just trying to come to turns with all of this new information. Has anyone heard of Gardner Syndrome or had their colons removed. Any suggestions, and help is welcome.

Thanks,

July

[Hannah]

I don't know a ton about Gardner's, but I am pretty sure that cynnycal on this list has it also - is that right cynnycal? She had her colon removed maybe a month ago, and maybe could shed more light on it.

From what I know, Gardner's is a particular kind of FAP and is fairly rare (about 1 in 1 million people have Gardner's vs. 1 in 8000 with FAP). I also know that polyps have a 100% chance of becoming cancerous if not removed. So if you don't have your colon removed, you will want to discuss an extremely rigorous screening schedule (probably colonoscopy every year and possibly other tests).

If you haven't already, see if you can get a referral to a genetic counselor, and see if you can get one who "specializes" in colorectal cancer. S/he should be able to help you more with the issues, including the decision you face regarding removing your colon or not.

Removing your colon is definitely the recommended course of action, but it is still your choice. If you do choose to have it done, you have a lot of options - it does not necessarily mean a permanent colostomy. If you do have an ostomy, you will learn to take care of it and you will learn to live with it. One great thing is that if you don't have a colon, you will NOT get colon cancer!

Hannah

[july181998]

Hi Hannah,

Thanks for replying. Please read my other post on APC Gene Mutation. I've been seeing a genetic counselor, and I've been tested for the APC Gene Mutation, which I have AFAP. I will be having my colon removed next year sometime. However, I've ony been with my employer almost a year (Nov. 7, 06') so I am trying to wait, so I can receive STD payments at 70%. By the way, I just had my colonoscopy in March 06'. Also, Cynnycal has replied to my posting on the APC gene mutation. I am in the process of meeting with three board certified colon/rectal surgeons here in Chicago. She was kind enough to give me a list of a couple of doctors, along with my genetic counselor who'd given me a couple of names. Before I go an meet with them, I am trying to learn enough about the disease so that I can ask the right questions. I will keep you and the boards updated on my visits and my surgery.

Thanks,

Ann aka July98