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What is Lynch Syndrome?

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  • Written By: Tricia Ellis-Christensen
  • Edited By: O. Wallace
  • Last Modified Date: 18 August 2014
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Lynch syndrome is an inherited medical condition in which people affected inherit several genes that make them much more likely to develop certain types of cancer. Most commonly those who have Lynch syndrome are at higher risk for colon, endometrial and ovarian cancer, and are especially likely to get these conditions at a young age, before they turn 45. The condition, which is often diagnosed based on family history or early onset of cancer plus family history, is best fought through examinations that can catch cancer early on when chance of treating it successfully remains highest.

A person gets this condition by inheritance. When someone has the condition and has children, there is a 50% chance each child may inherit the condition. What you are really inheriting with the condition are some genes that don’t perform certain jobs in the body correctly. Some of our genes work to correct DNA that has mistakes in it. People with Lynch syndrome lack the ability for these “correcting” genes to work properly, which in time can lead to abnormal tissue growth and cancer.

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If you develop colon, endometrial or ovarian cancer at a young age, and you don’t know your family history, you may have inherited this syndrome. If you do know your family’s medical history, there are some guidelines, which establish when to look for the condition. These include history in the family, especially of your mother or father, of developing cancer or tumors, which include the above-mentioned and also cancer of the stomach, kidney, bowel, brain, and skin, and especially whether that history extends to the parent’s siblings. Doctors also look for two back-to-back generations of such history of cancer and when cancers were developed, especially if they occurred before the age of 50.

When doctors know the medical history of family members and Lynch syndrome is suspected, this generally means the condition is treated through earlier screening for cancers. Doctors will also generally refer you to a genetic counselor, who may order genetic testing. Even if you do test positive for the condition, this is not a guarantee that you will get cancer, but you do have a 60-80% chance of developing cancer in your lifetime, hence the extensive screening like colonoscopy, ultrasounds on ovaries, and testing of endometrial tissue, usually yearly once you are in your 30s. A negative test, though, doesn’t necessarily mean you don’t have Lynch syndrome, so with the condition strongly suspected in your family, you will still need more extensive cancer screening on a yearly basis.

Greater potential that you have Lynch syndrome may be evaluated by testing any tumors that might develop, to look for the lack of certain proteins in tissue samples. Yet even this testing may not confirm the condition. Given the high rate of inheritance from parents, and the risks of cancers that can be fatal if untreated, even those who test negative for the syndrome are usually followed very closely.

Many people who have Lynch syndrome are not only physically challenged but also emotionally challenged by the risks of developing cancer. This can be a difficult thing to understand and deal with, and it may be complicated by having lost family members to certain forms of cancer caused by Lynch syndrome. In addition to genetic counseling, many people benefit from regular counseling or contact with support groups to help them deal with the emotional affects arising from the condition.

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anon339224
Post 27

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.

anon323236
Post 26

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

anon262466
Post 25

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!

anon221853
Post 24

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).

anon157428
Post 23

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

anon154008
Post 22

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.

anon154003
Post 21

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.

anon145206
Post 20

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

anon143790
Post 18

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!

anon140578
Post 17

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.

anon133342
Post 16

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.

anon130162
Post 15

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.

anon128033
Post 13

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.

anon125459
Post 12

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?

anon123735
Post 11

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.

anon108680
Post 10

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.

anon101375
Post 9

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.

anon100610
Post 8

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

anon88356
Post 7

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.

anon60910
Post 6

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.

anon60824
Post 5

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.

anon52524
Post 4

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

anon51396
Post 3

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.

anon38625
Post 2

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?

anon30845
Post 1

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

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