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Hello everyone.
I've just spent the last hour reading the messages on here and figured I would post a message too. I am 26 years old and am an HNPCC carrier. Can anyone here relate to that? My grandfather had colon cancer at age 38 and passed away at that time. My mom's oldest brother has had colon cancer, my mom has had colon and uterine cancer and now my 30 year old brother has colon cancer. I've read stats saying that there is an 80% chance of developing colon cancer if you are and HNPCC carrier. So I feel like I'm a sitting duck. My brother was diagnosed as a stage II with 3 involved lymph nodes. He is going through intense chemotherapy and nothing seems to be going right with the treatment and his indwelling line, he has a port-a-cath. On top of that he has 3 young children and a baby on the way! Now I'm trying to weigh my options and decide what I should do. I have routine colonoscopies (every year), but my gastroenterologist as well as the oncologist suggest that I have a prophylactic total colectomy. Seems radical, but it would most likely guarantee me from developing the disease, in my colon at least. Has anyone heard of this? Has anyone done this? I'm from Canada, and my husband and I are planning on making a trip down to the Mayo Clinic in Rochester to get an opinion from them. Any insights? Thanks

nanuk's picture
Posts: 1362
Joined: Dec 2003

first, I have no answers. I have never heard of such a radical solution. You have made an excellent choice in Mayo. Expect some expert answers to your question (s) here, and stay with us..I for one would like to follow your progress as you become "family here"... bud

MCarr's picture
Posts: 20
Joined: Feb 2007

I agree you have made an excellent choice in going to Mayo, Rochester for a second opinion, they saved my life twice. I am sorry to here about your brother, but hang in there. As a ray of hope I was 36 when diagnosed and nothing was going right for me either. I also have a young family. Mayo saw me through all of the complications including problems with my central line. I had a Double lumin Groshong catheter that developed a staph infection. That was all in 2000, with a recurrence in 2002, so tell him to continue pushing on. I found that my will survive for my family was a very powerful thing.

Posts: 405
Joined: Mar 2007

Welcome to the site. It has really helped us in this battle against this beast. I don't know much about your situation, but I do know that my husband has been doing all of his treatments at the Mayo. We have only positive things to say about this clinic. I'm sure they can help you with your decision. Good Luck!

Posts: 126
Joined: Jan 2006

Hi Darilyn,
Welcome to this site.
I went to a genetic counselor yesterday to be screened for HNPCC, and everything you have said is consistant with what I was told. I think that it is wise to get as much information as possible, and the Mayo is the best.
Best wishes,

PGLGreg's picture
Posts: 741
Joined: Jul 2006

Maybe you could just increase the frequency of colonoscopies. At least, if it hasn't come up, it might be worthwhile running that past your doctors.


JADot's picture
Posts: 720
Joined: Jan 2006

I have HNPCC, and oddly, the first ever in my family. Go figure! The thing you should know about HNPCC is that it also predisposes women for uterine and ovarian cancers. So you should asked to be check for all 3, all the time. I get CEA and CA125 tests every 3 months. My gyn has said the dreaded H word. So I know how you feel. You are most definitely doing the right thing by going to the Maya clinic.

Good luck to you!

Posts: 2
Joined: Mar 2007

I am VERY aware of the uterine and ovary risks as well. I'm having routine paps etc. No blood tests as of yet. Have you had colon cancer or are you just a carrier and haven't had cancer yet? I will continue being screened but am definitely leaning towards complete colectomy, have kids and then have a hysterectomy. I just don't want to get cancer if at all possible!

lucy120's picture
Posts: 5
Joined: Apr 2007

I also have HNPCC. My father died from colon cancer at age 34, I was 23 when diagnosed. I had primary kidney cancer at age 45, which is not one of the ones that high on the list. Three months ago the kidney cancer metastasized to the lungs and brain. My gyn oncologist also has been pressuring me for the big H.

Many relatives on my fathers side have had HNPCC cancers. They have not been tested. I have been told that if you have the gene mutation then you have a 50% chance of passing it on. If you don't have it then no chance. My siblings have not been tested I believe they are worried about insurance. Good luck.

2bhealed's picture
Posts: 2085
Joined: Dec 2001

Hi Darilyn,

Welcome to the boards.

I did all my diagnostics and surgeries at Mayo and always say they run like a Swiss Watch. I lovelovelove my oncologist! (and my surgeons). The place is beautiful too which is in stark contrast to so many health care facilities. I live in Minnesota thankfully so it's not too far.

I am curious why if the doctors and you are rigorous about prevention and diagnostics would they want to haul out your entire equipment? Not sure how that makes sense, but I don't know much about HNPCC.

Is that something that is routinely checked when we have our surgery or does one need to have specific testing done to determine if one is a carrier?

Please advise.

My sister was diagnosed with intestinal cancer when she was 29 and we had no family history. She had been misdiagnosed for years (I am sure due to her age) and no one bothered to advise any of us to get scoped (we were told her cancer was rare-wrong) because I was dx'ed with colon cancer (sigmoid) when I was 39 and was told the tumor could easily have been there for 10 years (putting me at her same age when dx'ed).

I wish you and your brother all the best in this......he has a lot on his plate right now. You are added to my prayers.....

peace, emily

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