Colon cancer gene

shelloz1

Hi,

Recently I have been told that I carry the APCI1307K (Colon cancer gene).  Can anyone tell me more about this.

 Thanks

eileen1955

Sounds like we are on similar pursuits for this specific knowledge.     My father had colon cancer at a young age (40) and then died of it at 62.         It was an entirely new primary site that caused his death.        

Then I get breast cancer at 47, which is kinda early according to the statistics.   So I have spoken to a geneticist about a possible link between colon and breast cancer.    she mentioned Lynch Syndrome; but then backed off a bit b/c no one in my entire family has had breast/colon or ovarian which is the complex of LS.   she suggested that I get my father's old lab pathology slides (from 1992 when he died)       I just called that hospital's lab recently expecting them to laugh at me.  The very rational answer was that they'd look into their storage and my father's next of kin (my mother) would be the one to sign the release.        The path lab seemed very interested in my quest.  

People ask why do I do this? B/c it will help me better make decisions about preventative mastectomy and ovary removal.       It will benefit my entire family.      

I am seeing a new oncologist this Friday so I'll ask that I be tested for that specific gene you mentioned.   I am very interested in your story. eileen

Dee2010

I'm doing this same genetic research.  My mother and my father's brother both died of colon cancer, and cancer runs rampant on my mother's side of the family. My sister has had thyroid cancer, as have three of my cousins.  I've had thyroid cancer and now IBC.  All of my mother's aunts and cousins have had cancer. It's worrisome, and I wonder what I'm passing on to my son...

shelloz1

Hi Eileen/Dee

Interesting, my mother or father never had Colon cancer, but my genectics counsellor now tells me that one of them MUST have had the gene.  My aunt (on my father's side did pass away from colon cancer).  Yesterday my husband said to me, I wonder if that gene is what caused you to have breast cancer (which I got at 47 as well) spooky or what! 

You have me curious now, I actually was analyzing my blood work, I keep seeing Lynch syndrome, but never gave it much thought, now I'm seeing my Oncologist on Thursday, I think I better bring this up. Cancer runs rampant in my family as well, breast, colon, pancreatic, malanoma, thyroid, prostate, etc.

My genetics counsellor advised me that I should have a Colonoscopy done every 3 - 5 years, because with this gene, I have a 50% increased risk.  She also said that I should have my children tested.  My father-in-law passed away from Colon cancer, so they have a mother with breast cancer, a colon cancer gene and a grandfather that had colon cancer, very scary for them.

 I look forward to hearing from both of you

susan_CNY

my Grandma had breast, colon and oral cancers, my Dad colon twice and throat, his brother colon and 2 sisters, 1 of those sisters also breast cancer, I am the 1st diagnosed in my generation. please post more about this genetic test when you have more info

Welga

My aunt had first breast cancer then colon cancer a few years after. I always thought there was a link. Thanks for the info

Welga

shelloz1

I spoke to the gene counsellor again.  She said considering that I have the gene and that I have had breast and colon cancer in the family, they now will test me for the Lynch Syndrome gene as well.

 I don't know how advanced they are on the gene's, but I feel that there must be some connection.  Hopefully one day, they will have this all figured out.

 If anyone finds out any new information, I'd love to hear about it.

The best to everyone.

Shelley

eileen1955

Sheely: thanks for starting this thread. I see a new oncologist on Friday and I will pursue this topic with her.

Please tell me the situation that led to your being tested for the colon cancer gene in the first place;esp since neith parent had it.       And you can be tested for Lynch by blood test? There is so much I do not know about this field of genetics; probably b/c it is advancing so rapidly.

the geneticist I spoke to months ago advised me to get my father's old pathology slides from 1992. that seems a bit silly if I can just be tested for the genetic disorder. 

If I have Lynch, I'm not quite sure how that would affect my treatment plan.  Maybe I would consider getting my ovaries out?    Probably more frequent colonoscopies.  

My father had the disease of alcoholism so I always believed that caused his colon cancer. But there is not scientific link, I've been told by several docs.        Maybe it was my irrational belief to convince myself he caused his cancer.            Please keep us posted.

shelloz1

Hi Eileen,

I agreed to take a survey, it was all about breast cancer.  Part of the testing was agreeing to a genetics test for both the BRCA and the APCI, and I was fine with that.  I was concerned, although neither my mother or father had suffered from this, my aunt did and further relatives as well.  My sister who was diagnosed with Colitis (almost 50 years ago), was not sure that she actually might have had colon cancer, and that it wad perhaps missed or not diagnosed.

Regarding Lynch, I'm also not sure what this means, and I spoke to my husband about perhaps doing a hysterectotmy, but I will discuss this tomorrow with my Oncologist.  It definitely means doing Colonscopies more often. 

Keep in touch and let me know how things are going, and if you get any further answers as well,

Prayers and love to everyone on the board.

Shelley

eileen1955

What is APCI? I was going to PM the ? but thought that maybe someone else does not know either.  thanks and all the best.

shelloz1

Hi Eileen,

APCI is the name of the heredatory colon cancer gene.

 Shelley