Pretty sure I have hereditary colon cancer

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sofreakinscared
Posts: 1
Joined: Wed Aug 03, 2016 2:53 pm

Pretty sure I have hereditary colon cancer

Postby sofreakinscared » Wed Aug 03, 2016 3:00 pm

A few months ago I came across some info online that having congenitally missing teeth could be linked to colon cancer. So I did some research and discovered Gardner's Syndrome/FAP. Then I freaked out because I have the following symptoms:

-missing both upper lateral incisors and my upper canines were both impacted and I had to have surgery and a chain to bring them down

-a freckle on my eye (not 100% sure it's a CHRPE lesion, but my eye dr said its "probably been there since I was born" and choroidal nevus cannot be present at birth apparently. So I'm going with CHRPE.) From what I've been told I only have one not multiples

-dermatofibroma: had it removed from my leg a few months ago, also have another bump that I suspect is the same thing

-tori/buccal exostosis on upper gum, above where both canine teeth should be. Both sides. Could be osteomas.

So I'm 100% convinced I have this horrible disease, however I have no family history that I know of. No cancer really on either sides of my family. My brother is missing one of his lateral incisors and my dad's brother is missing both of his. My cousin (dad's brother's son) has peg shaped lateral incisors. My dad has all of his teeth and they are all normal shaped. If this trait/gene mutation is autosomal dominant how did my dad give it to both me and my brother? And why did my cousin get peg laterals instead of missing his?

I'm 27/female. I've already seen a gastroenterologist who said that he thinks it is "highly unlikely".

I'm worried sick that I have this disease, it's all I can think of.

janklo
Posts: 1567
Joined: Wed Mar 03, 2010 11:10 pm
Facebook Username: JanetKlostermann

Re: Pretty sure I have hereditary colon cancer

Postby janklo » Wed Aug 03, 2016 4:57 pm

I've never heard of this disease and it's unlikely you have it. But--is there some kind of genetic testing you can get? That would put your mind at ease. Also online it says dentists can diagnose this. Have you talked with your dentist? Don't drive yourself sick worrying, get some answers.
Mom to 28 yo daughter
colectomy 2/22/10, stage 3C, signet cell
7/2011 peritoneal mets
HIPEC September 2012, difficult recovery
Hospice 10/31/2012, Died 11/16/2012

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Pretty sure I have hereditary colon cancer

Postby Lee » Thu Aug 04, 2016 10:20 am

I've never heard of this disease either. I had rectal cancer and none of the issues you just described. Talk to your dentist, express your concerns, see what they say.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

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mypinkheaven
Posts: 459
Joined: Fri May 20, 2016 4:29 pm
Facebook Username: Sally Cunningham
Contact:

Re: Pretty sure I have hereditary colon cancer

Postby mypinkheaven » Thu Aug 04, 2016 11:37 am

Why not get a blood test looking for a mutation in the APC gene?
MSS, KRAS Wild NRAS Mutated
9/2012 CRC IIB Lft Colectomy 0 lymph nodes 0 Chemo
10/2013 CT clear
11/15 CEA 2.7 to 4.6
11/15 Spread to uterus. Hysterectomy
2/16 Pelvic radiation 25, brachytherapy 3
4/16 - 6/16 Xeloda
6/16 CT Several lung nodules 5 mm
8/16 CT Nodules still present. Most stable. Some growth
11/16 Transfer to UCSD Moores
12/16 Folfox + Avastin failed
2/17 Folfiri + Erbitux
8/17 5FU+Erbitux No 5FU bolus
7/18 Spread to vagina
6/18 Folfiri + Avastin + Trametinib
6/18 CEA dropping

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BeansMama
Posts: 959
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: Pretty sure I have hereditary colon cancer

Postby BeansMama » Thu Aug 04, 2016 11:40 am

Are you basing your self diagnosis just on your dental characteristics? Do you have any GI related symptoms? If not you may be jumping the gun just a bit.

Dr Google is not always accurate. Using it you could diagnose yourself with any number of diseases. You have seen a GI, go see a dentist, get genetic testing. You have no family history of cancer.

I'm sorry, I am not trying to be harsh at all. It seems you may be overreacting just a little bit. Your post says it could be linked to, not definitely is linked to. Step away from the computer and go see a doctor and a dentist.

Please stop trying to self diagnose, it will drive you bananas with all the possibilities. I have been there and I have driven myself nuts. I had to learn myself to stop and trust my doctors.
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016


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