Has anyone on this board been diagnosed with Lynch syndrome associated with colorectal cancer. The reason I ask is because I have begun genetic testing due to (quick and relatively young) cancer deaths in my family (mother 57 Non-hodgkins to brain tumour, uncle 60 colon cancer, grandfather 57 colon cancer, grandmother 60 non-hodgkins, and most recently brother 56 non-hodgkins to pancreatic tumour).
Although our familial cancers are predominately colorectal - they do see a strange trend in non specific cancers.
Can anyone tell me if they know of this Lynch syndrome and if these other cancers sound like something that could be associated with the genetic disorder.
Thanks .. Liz
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LindyLee70
12-27-2007, 02:43 PM
Hi Liz,
My 81 year old aunt underwent her first bout of colon cancer at about the age of 54. She had a resection,then had another about about the age 70 and underwent another resection. At the age of 80, she was diagnosed agai with colon cancer and one year ago, underwent a subtotal resection. Despite taking chemo, she is eating, dancing and continuing everyday activities. It was during this last bout that she met with a geneticist that diagnosed her with Lynch. Her sibling, my father, had bouts with skin cancer, colon polyps, renal cancer, esophogal cancer and finally succombed to bone cancer ten years later.
My brother was diagnosed with colon cancer at the age of 51. He is now clean and free of it after five years, after it was removed. He did not undergo chemo. He is a year older than me. I was diagnosed with it last month and am scheduled for a subtotal resection next week.
Of the three siblings in our family, two have colon cancer and one, I suspect, is not being surveilled.
I became to do a genealogical investigation into the age of morbidity in our family to determine where the gene may have come. As well, the survivors in our family are working with a sibling study at Case Western University to help determine the gene that is mutated. May or may not be Lynch, but cancers often run in familial groups. Sometimes they skip a generation.
Unfortunately, in earlier days, individuals did not go into the hospital for testing and only when symptoms were bad. Often deaths were listed simply as "heart failure." Fortunately, my father recalled his father had "stomach cancer." I researched the cause of death of his father's six siblings (my grandfather's) and found four of six died exactly at the age of 55. One was diagnosed as cancer while my grandfather was diagnosed as "heart failure" as well as two other siblings.
I went back to the mid eighteen hundreds and did not find it in my great grandfather's line but did find six of seven siblings in my grandfather's mother's line died between the ages of 52 and 62, which was most likely a result of cancer.
There is a lot of research about Lynch and familial cancers online. With Lynch, several areas of the body can be susceptible to cancer, including the renal pelvic area, the colon, the liver, the lungs and the breast as well as the uterus.
With this knowledge, we can arm ourselves with precautionary methods. Get the regular pap smears, a chest Xray every five years, a colonoscopy (not a sigmoidoscopy) every five years from age 25 up for those with Lynch, get genetic counseling done and have regular mammograms and physical checks for lumps in the breasts. Get your children checked genetically to see if they have the mutated gene.
People don't have to die at early ages as they did in the past from cancer. It is quite cureable today. There is hope, considerable hope and considerable technology and studies.
I view my upcoming surgery as a blessing. I had little doubt the cancer would occur and the stress was wondering when. Now, there is relief in knowing so I can get the treatment. Hopefully, they will be able to determine the location of the mutation of our gene in our family to benefit generations to come.
Its a part of living and as far as I'm concerned a minor inconvenience to continue this wondrous thing we experience, called life. One thing for sure is there is the reinforced fact that life is uncertain, whether or not one has a cancer gene or not or has cancer or not. Fortunately, this is one of those uncertainties that, in many instances, can be controlled by modern day medicine.
So, get those tests. If your doctor balks, scream and scream loud. Go higher if you have to. And stay positive...learn all you can. Once you have the knowledge of your genetic situation, the fear will subside.
Has anyone on this board been diagnosed with Lynch syndrome associated with colorectal cancer. The reason I ask is because I have begun genetic testing due to (quick and relatively young) cancer deaths in my family (mother 57 Non-hodgkins to brain tumour, uncle 60 colon cancer, grandfather 57 colon cancer, grandmother 60 non-hodgkins, and most recently brother 56 non-hodgkins to pancreatic tumour).
Although our familial cancers are predominately colorectal - they do see a strange trend in non specific cancers.
Can anyone tell me if they know of this Lynch syndrome and if these other cancers sound like something that could be associated with the genetic disorder.
Thanks .. Liz
LESLIETOO
12-27-2007, 06:17 PM
LindyLee
HNPCC Lynch tumors grow a lot faster than random colon cancer. If a person is diagnosed with that genetic mutation, it is important to be have a colonoscopy on a yearly basis because within a year or so, a polyp can become cancerous. On the positive side, Lynch tumors are generally associated with high microsatellite instability and this characteristic is also linked to increased survival after removal of the tumor. As far as breast cancer goes, there has been no confirmation of a link between Lynch Syndrome and breast cancer. However, a person can also have a BRCA mutation independent of the HNPCC and having both mutations, thus be susceptible.
LindyLee70
12-29-2007, 02:30 AM
I totally agree with you in respect to how often it should be screened. I believe some guidelines state colonoscopy surveillance every one to two years and five years prior to the age the cancer is contracted by the familial member for those who have confirmed HNPCC. The problem is in confirmation which requires genetic testing and unfortunately, some of the guidelines are "too specific."
We just received, last week, in the mail the Colon Cancer Screening Recommendations of the American Cancer Society. They read:
If you have a first degree relative who was diagnosed with adenamatous colon polyps or colorectal cancer at or before age 60, or if you hve two or more lst degree relatives with either diagnosis at any age, the ACS guidelines are: Schedule a colonoscopy at age forty or ten years before the youngest case in the family, whichever is earlier. The colonoscopy should be repeated every five to ten years.
If you have a personal history of colorectal polyps: After removal of a single small adenomatous polyp: Colonoscopy in three to six years and if normal, continue with guidelines for average risk. After removeal of large or multiple adenomatous polyps: Colonoscopy within three years and if normal, repeat in five years; then if normal, continue with guidelines for Average Risk.
If you have a history of colorectal cancer: colonoscopy within one year after curative intent surgery, if normal, repeat colonoscopy in 3 years, if second is normal repeat colonoscopy every five years.
If you have a personal history of Inflammatory Bowel Disease (IBD) (Ulcerative Colitis or Chron Disease) or a family history of Familiall Adenomatous Polyposis (FAP) or Hereditary Non-Polyposis Colon Cancer (HNPCC) consult your primary care physician for a more aggressive screening program tailored to your needs. Genetic counseling is recommended for FAP and HNPCC.
Average Risk Guidelines: If you neer had adenomatous colorectal polyps or colon cancer or ulcerative colitis and have no lst degree relatives with adenomatous colon polyps or colon cancer: Begin at age 50 to have either:
Yearly Fecal Occult Blood Test plus flexible sigmoidoscopy every five years or Colonoscopy every ten years or Double Contrast Barium Enema every five years."
Thus, the guidelines of the American Cancer Society.
Our family been working with geneticists the past four years. My Aunt was diagnosed with Lynch last summer, (MSH2) however I believe as far as my brother and I are concerned (two of three siblings with colon cancer) there may be also be another gene involved, perhaps within the I chromosone, which has yet to be identified. My daughter does have endometrial dysplasia.
Interesting is the gene that was discovered with my Aunt, by the geneticist and which was consistent with the mutated gene of HNPCC, MSH2, does not meet the guidelines of the Amsterdam criteria in respect to age, as no person in our family has been diagnosed with colon cancer prior to the age of fifty. In fact, most the diagnoses were made between fifty two and fifty five. If the guidelines in this respect were followed, then the diagnosis couldn't be made. The Bethesda criteria is even more stringent. In the above case of our family, it was clearly out of the parameters of the criteria that we would be of risk.
The family history in line with direct descent to us indicates pancreatic cancer, colon cancer, breast cancer, stomach cancer, renal cancer, esophogal cancer and bone cancer (as a result of metasticization.) The one commonality was colon cancer with my Aunt and I having an almost identical cancer on the distal transverse colon.
I was just recently diagnosed with colon cancer a few weeks ago after having undergone a colonoscopy five years ago. The guidelines followed by our HMO was every five years for a colonoscopy.
As you stated, in light of that colonoscopy, tumors appeared to be aggressive and two were flat. There is a possibility they existed prior however may have been difficult to be seen within the colonoscopy without CE evaluation as they were flat and small. Either they were aggressive or they were missed because of their size. Studies show both scenarios could be possible.
However, hopefully subtotal resection will resolve and alleviate recurrance, since they appear to be located in the distal transverse colon and I have been advised the transverse colon and descending colon is where this type of tumor frequents. They did invade the intra-mucosal layers and until surgery is conducted, it is unknown just how aggressive they were. It is quite possible there are more within the folds of the colon.
Here are some recent studies I have found that have familial associations with breast cancer cancer, and though I believe they may relate to the BCRA mutation, however I didn't note indication of it as being separate within them, they do indicate association with breast cancer and those with HPNCC. Breast cancer was added as a result of that, in my post, as well as was cited in another article. I'm kind of lazy about being so totally specific.
"HNPCC stands for Hereditary Non-Polyposis Colon Cancer. Individuals who inherit a mutation in one of several genes have an increased risk of colon, uterine, stomach, ovarian and other cancers. Breast cancer risk also appears to be increased in some families with an HNPCC mutation, but the risk is lower than that of the cancers just mentioned."
As far as me, I realize what will happen in the future is dependent upon the abilities of my surgeon (whom I have the utmost of respect and faith within) and the aggressiveness of the tumors. I can only control my diet and my everyday life, both psychologically and physically.
Thanks for your response.
LindyLee
HNPCC Lynch tumors grow a lot faster than random colon cancer. If a person is diagnosed with that genetic mutation, it is important to be have a colonoscopy on a yearly basis because within a year or so, a polyp can become cancerous. On the positive side, Lynch tumors are generally associated with high microsatellite instability and this characteristic is also linked to increased survival after removal of the tumor. As far as breast cancer goes, there has been no confirmation of a link between Lynch Syndrome and breast cancer. However, a person can also have a BRCA mutation independent of the HNPCC and having both mutations, thus be susceptible.
