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Old 05-21-2001, 12:08 AM   #1
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barris HB User
Post Neurofibromatosis

Hello everyone.

I dont have cancer- but I have many tumors. I have had about eight removed, all of which were benign. I have about 20 this summer I may get removed. In 1997 my mother died of cancer. I cant help but think that my tumors are ticking time-bombs. Many times it is just sombering.

Elijah

 
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Old 05-21-2001, 09:49 PM   #2
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I guess the most important thing I can do is worry about something I dont even have yet.

Thanks bud,
Eli

[This message has been edited by moderator2 (edited 02-21-2003).]

 
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Old 07-12-2001, 02:33 AM   #3
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hi elijah ! i have the same problem. i also have many tumors,which are benigne. but they spread like cancer.against cancer you can at least do something (surgery,chemotherapy) but against my tumors nothing can be done, but the anxiety stays. this is really terrible, i know how you feel. god bless you.

 
Old 07-14-2001, 07:16 PM   #4
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when you were diagnosed didn't someone go over the cancer risks with you? You should be able to know that from whoever diagnosed with, then you donn't have to excessively worry about it.

 
Old 07-14-2001, 07:22 PM   #5
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I was diagnosed fifteen years ago. It's all heredity.... My mother had, it as does my brother. It's okay. Sometimes I just sit and wonder if I should be reevaluated, to see if any new prognosis is warranted. I mean, I still have the tumors, but I just want to see if they have changed in any way (other than finding new ones every so often).

Thanks for yalls concern,
Elijah

 
Old 07-18-2001, 06:17 AM   #6
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Elijah

I just went and looked at the main support group site for your condtion there are no mentions of increased cancer risks. The treatment is just removal of the tumors if they become bothersome.

 
Old 07-18-2001, 10:19 AM   #7
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Generally speaking if your health is otherwise ok then the tumours would be nothing to worry about.

 
Old 07-18-2001, 10:19 AM   #8
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barris HB User
Talking

Thanks for that hon. Smiles.

Yeah, thats all I do get done- remove the ones that are bothersome. Thanks for that cancer info it really helps.

Hugs,
Eli

 
Old 07-20-2001, 01:41 AM   #9
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ELIJAH how do you get along with the fact of having many tumors in your body ? i just can't fix it. even though the possibility, that one will become maligne is small, i will never feel healthy again.now i see my body as a kind of enemy....

 
Old 07-20-2001, 06:04 AM   #10
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I just kind of adapt to it. The only ones that bother me are like ones on my shoulder blade that if I carry a shoulder strap on that shoulder... it may get pinched and OMG. There are a few others that hurt in certain instances... but otherwise... I dont really pay them much heed. I think about the subject occasionally... but just as quickly the thought disappears.

Hugs,
Eli

 
Old 07-23-2001, 05:48 AM   #11
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elijah,

i think your attitude is very good. why focus on things you can't change. i can understand your concern about cancer. but really i don't think the tumors turn into cancer.

i have a condtion like hokestra that grows some lipomas but I try not to focus on it, and just get the ones removed that bother me.

what i have though does have an increased risk of cancer, but i still don't look at my body as my enemy it is my temple a gift from god.

 
Old 07-24-2001, 04:02 AM   #12
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HI ROSALITA ! where do you have the lipomas ? under the skin or inside of the body ? who many do you have ? the other thing is a question of the attitude. i am simply a pessimistic person, which i have ever been. and now where i have this disease it got even worse !

 
Old 07-29-2001, 06:18 PM   #13
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hoekstra,

I have them both places, but unless your a woman you need not be to concerned about the cancer risk. the increased cancer risk is in the breast and thyroid. that's it. If you have what I have they are small. I feel there are a lot worse diseases such as cancer, so having a genetic disease that may predispose you to cancer should not get you down. you need to get some information on your disease so you have your sense of control back over your life. everyone has something wrong genetically wether it be diabetes, heart, huntingtons exc. usually when people get cancer they don'[t even know why. they just treat it. find out what you need to worry about..

 
Old 02-19-2003, 08:38 AM   #14
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Hi,

The type I have is called, "Von Recklinghausen". You can do a search for it and read about it. Basically for mine, they have potential for becoming malignant, but mostly are benign. There is no cure for it. Just get the ones removed that bother you.

Hugs,
Eli

[This message has been edited by moderator2 (edited 02-21-2003).]

 
Old 08-11-2003, 12:13 AM   #15
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Hello I am a 34 yr old female with NF-1. I was Dx in 1991 and was shocked. This disorder is becoming more common. In a span of 3 years I met 3 ppl not inc my self. Each person was effected in different ways. The tumors can be caused by genetics or by a spontaneous gene mutation. Mine is genetic. Those with the disorder have a 50/50 cance of having a child born with the disorder and a 50/50 of not. I have more than 6 cafe-au-lait light brown spots that are similar to birth marks and can be found any where on the body.I was born Piegon toed or club footed.My eyes have lisch nodules which are pigmented bumps on the iris of the eye. I have over 100 plus tumors on my body ( mainly the abdominal area. I have had one removed that was by my belly button and I had 2 removed at the time of a hysterectomy. The Dr told me the tumors can return and may be twice the size of the original tumor. Tumors can be found anywhere in the body. I have had several MRI's and a CT of the brain and Thank God I don not have any on the brain or on the Eye. This disorder can cause depression and can be enhanced while pregnat. I learned a lot about NF from living with it and from a conference I attended in San Diego where the Dr who is I would say an expert on NF spoke. There is a site that can provide more info> I highly reccomend it to anyone, it is [url="http://www.nf.org."]www.nf.org.[/url]

[This message has been edited by CalGal2003 (edited 08-11-2003).]

 
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