What is Lynch Syndrome?

What is the possibility/odds that a husband and wife could have Lynch Syndrome? My daughter has been diagnosed with LS and my wife does have it also. Could I as well?

If anyone is on Facebook, Lynchville is an awesome place for support. There is a public Lynchville as well as a Private Lynchville community. There are a bunch of people who are living with Lynch Syndrome and can answer so many of your questions. Plus, it's really nice to know you aren't alone in this.

My husband was diagnosed in 2010 at age 37 with colon cancer. Six months later Lynch was confirmed. We have two young kids - too young to be tested at this point.

In my husband's case, there was no family history of colon cancer, but due to his age the oncologist recommended he be tested for Lynch.

My husband passed away from colon cancer and was positive for Lynch Syndrome. My nine year old son has developed pretty severe esophageal reflux and stomach pain over the last six to eight months. I did tell the doctor about the diagnosis of Lynch Syndrome but they didn't seem concerned about it. Jacob is too young to be tested. Should I be concerned? Does anyone know the youngest case of colon/stomach cancer connected with Lynch Syndrome? --Tracy

I had colon cancer stage 1 at 38 and have been tested for Lynch. My doctor said it would be five to six weeks for results! Why so long? It's killing me with the waiting and constant fear!

My sister, age 62, just had surgery for colon cancer, is also a double mastectomy patient (age 40) and prior to that, endometrial cancer - after she had had her two children. No one else in the immediate family (including me, age 65) have had any other than small skin cancers which caused no problems.

How did she come up with all this and no one else has had any signs? They have put her into a Lynch Syndrome study now and her children (daughter, son) have to be tested to see if they are carriers. I have no children.

Prior to her diagnosis with colon cancer, she was having some digestive problems etc.m but all the problems she has had over the years we figured were caused by the chemo she had over time for the breast cancers (and she had two types of breast cancer).

I am having a difficult time understanding all of the criteria concerning Lynch Syndrome. My husband's aunt has been diagnosed with this at eh age of 89. She has had several different cancers during her lifetime, including colon.

Her sister, my husband's mother, developed colon cancer at age 79 and recovered only needing surgery to remove a tumor. No one in the family has developed cancers at a very young age, thank God, but my husband's brother just had a kidney removed due to cancer of the ureter which apparently can be related to Lynch Syndrome. He is 63. Wish someone could advise me is my three children should be tested for this syndrome. Any advice out there for me? Thanks. --Concerned Mom in NY

Question no. 2: Sounds like lynch syndrome. they can do a dna test on you for it, a mutation detection test (basically they test for missing proteins in the body). Symptoms can be heavy bleeding and pain in the upper thighs and abdomen. there are more symptoms. Ask your doctor that you would like him or her to give you information on the test.

To Question #13: The fluid in the breast is from the operation or lumpectomy you had since the flesh is taken out the body fills that spot with fluid to replace the flesh. I also have had uterine third stage and two lumpectomies one on each breast and they had to go back in on the left one due to a margin problem. I have been through chemo, radiation, etc., in the same boat lynch syndrome can cause several different types of cancer in different areas. look under lynch syndrome. it should give you some info.

If my maternal grandmother had lynch syndrome and my maternal aunt and my mother, does that mean my mother's children have it too?

My family on my mother's side has cancers running through them. Trying to make it short, My mom passed away at 60 of endometrial cancer and had been on chemo for 10 yrs. Two other sisters of hers have passed from colon cancer and one other sister had had many cancers but is still going at age 75.

I first got cancer when I was 37 years old in 1994. I was diagnosed with ovarian, uterine and cervical cancers at the same time. All individual! I had internal and external radiation and 2 1/2 years of chemo.

In 2001 I was diagnosed with colorectal cancer. I had a year of chemo for that.

I have always went for my yearly tests right on time.

This past year Oct.2010 all my tests came back fine except my Colonoscopy. Turns out in one year, I have stage 4 colon cancer that has metastisized to my abdomen,

I had two major surgeries, now have an ileostomy bag and starting chemo.

Yes, the blood test show I have Lynch and that's why the cancer grew so darn fast.

I pray my daughters don't have this horrible thing!

my boyfriend is 24 years old and was diagnosed with colon cancer a little less than a month ago. He just recently had his tumor taken out. We are now waiting for the pathology results which will tells us whether or not it's lynch syndrome. Doctor says there's a pretty big chance since he's so young. His grandfather died of stomach cancer but his father has never gotten checked so we don't know if its genetic or not.

His symptoms basically started when he was 17 but never got checked. Basically it was diarrhea and a little over a month ago, just before he found out, it was severe anemia. If he had been checked seven years ago, it would have been detected so early but he is not at stage III.

Don't wait until your symptoms become more severe.

I am a 29 year old female that was diagnosed with stage iv colon cancer that spread to the liver and lungs. i got tested and it came back positive lynch syndrome early this year. i just thank God every day that I'm still alive.

the thing that got me was no symptoms to warn me something wrong was going on the doctors gave me a good prognosis and i have to get my four children tested. My mother also is battling breast cancer had a double mastectomy had cancer in her colon and ovaries and had a colon resection and a hysterectomy four months ago and she is doing well.

If you've been diagnosed and have sisters, brothers, first cousins or children please tell them it is important to get tested.

I just talked with my daughter who is starting the genetic testing because she just turned 40. She is scared because my mother died of a brain tumor at 41. I had breast cancer at 42 but had a bilateral mastectomy because I didn't want to worry about it.

I had stage IV colon cancer at age 51 with metastasis to the lymph nodes and the whole right lobe of my liver was full of cancer. After surgery and chemo I made a full recovery.

I then had a total hysterectomy a year later. My sister died of uterine cancer at age 52 the next year after I convinced her to get a hysterectomy, but it was too late. My sisters daughters who are also 40, and my daughter are trying to get all this figured out. I wish I had known my mother's father had colon cancer when I was trying to figure out what was wrong with me.

I had never heard of Lynch Syndrome until my daughter told me about it recently. All I can say is that I am still alive and living a wonderful life at 66. After my colon cancer I made it a point to make sure I live life to the fullest and not put off living. In that way I say cancer has been a good thing. Think positive.

I have lynch syndrome and my daughter has also been unfortunate to have the gene mutation as well, but she is aware and getting screening for everything she can have done to prevent what happened to me.

I have stage3b uterine and stage 1 breast cancer, I had a hysterectomy (full)and two lumpectomies, one in each breast. Unfortunately, in a recent nuclear ct scan they discovered fluid in the left breast. I'm not sure but it can't be good.

Anyone know anything about this? I have been looking on the internet but they do not give you a straight answer. I am seeing my doctor today and haven't slept all night.

I have the HNPC gene and have just had a full hysterectomy to lower my risk of womb cancer. My father died of bowel cancer and my brother has had bowel cancer at 45. I will receive regular screenings for colon cancer on a two-year basis. I am now paranoid about getting cancer. Are there any other screenings they offer to be able to catch them early?

I am 40 years old and just recently been tested positive for Lynch. I am also a diabetic, have kidney disease and may have problems with my thyroid. I may have ovarian and uterine cancer as well. I see my GYN tomorrow morning and with this new diagnosis so I may have to look at a hysterectomy as well.

I am really worried about passing this on to my children, especially my special needs daughter who already has a lot going on with her health. I do not know much about any of this but hope to find out more.

I have just been tested. My sister died at age 28 of a glioblastoma (brain) and we have colon cancer on both sides. My dad has terminal colon cancer now as did my aunt. My mom had breast ca as did her mother, aunt and uncle.

I had my ovaries removed a few years ago because of sudden growth of large complex, but benign tumors. (didn't know they were benign at the time!) I sort of feel like a time bomb, but at least I can have more frequent testing to detect problems early. I have three children. I will do whatever I have to do.

I was diagnosed with FAP in 1998 and had a sub-total colostomy. My family were all tested for FAP and we have the gene that caused bowel cancer. My dad, two sisters and one brother.

I was diagnosed with bowel cancer in 2007 and had my bowel removed. I had a hysterectomy in March 2010 and histology showed that I had cancer in my womb and ovaries (no symptoms) and so I was diagnosed with Lynch Syndrome. I am now having chemo as a precaution in case there are cells somewhere else.

My husband is 22 years old and has rectal cancer because he has this lynch syndrome and we have a daughter who is 15 months old and has to get tested for the syndrome. And my husband is doing chemo and radiation. He is at stage three. If you have any symptoms of any cancer, please don't wait like my husband did; get tested. And if you pray, please pray for my family. --Cassie

there are no symptoms for lynch syndrome, as it's not in itself a disease. it's more a cause of disease.

i was told if i have more than four or five family members with cancer then i needed to be tested for lynch syndrome. I've been tested and get my results next week. there is a 50/50 chance of me having lynch.

if i have, then it won't mean i have cancer, but will mean i will be at a very high risk.

My father has just recently been diagnosed with lynch syndrome. He has colon cancer that has metastasized to his lungs, and also has lymphoma. The tumor in his colon had grown so large that, by the time they found it, it had attached to an artery and is too risky to remove it until treatment can shrink it down.

His father also had colon cancer and his sister had to have a hysterectomy, due to uterine cancer at a fairly young age. It makes me nervous for my own health.

I have had a recent colonoscopy due to intestinal issues that have been bothering me since i was in my teens. I have been diagnosed with Irritable Bowel Syndrome. But with this new information about my family's health history, I feel that maybe something more is going on.

You don't have any symptoms for Lynch Syndrome. The only symptoms come from your family history. Check out the Amsterdam criteria for more information on this.

The testing is just a simple blood test. They will then identify the four genes that would be mutated in order to cause Lynch Syndrome. If any of those genes has a mutation, you have Lynch Syndrome.

I just saw a genetic counselor a few days ago, so I have lots of info right now and am in the process of figuring out how to handle all of this myself.

so everyone who has a family member with cancer needs to be tested then?

My husband had a cancer to pop up in his eyelid in July. He had to have half of his eyelid removed to get all the cancer. The biopsy showed it could be related to muir-torre-syndrome which is lynch syndrome, so

he was sent to a genetic counselor. He had to have a blood test to verify if he was positive or not. The results came back positive. He was told to have a colonoscopy each year. Well he had the colonoscopy in late October and found out he has colon cancer.

No symptoms. Our daughter was tested and is positive also.

My family has a history of cancers which include colon, lymphoma, breast and other cancers. my doctor is now testing me for endometrial and ovarian cancer. I would like to know how they test genetically for this syndrome?

My interest is to find out the actual symptoms i.e., upset stomach, etc. exactly how would a person feel and what discomforts would they experience in order for the doctor to know to even suggest Lynch syndrome?

Betty