Lynch syndrome Community Group

Non-polypopis colon cancer

21 Members
84 Posts
0 Online
Cancers
/ Lynch syndrome Support Group

Children Tested Lynch's Syndrome

deleted_user
deleted_user
My husband was diagnosed, for the second time, with colorectal cancer. His first diagnosis was at age 18 when they had to remove a huge tumor that took up 80% of his colon. After his second diagnosis at age 35, he tested positive for Lynch's Syndrome. We have a 6 year old little girl and an 11 year old son who need to be tested. I would like to go ahead and have them tested so that we can start being preventative if need be. Our genetics doc at UAB told us that it is not ethical. Why not be safe? My husband had colon cancer at age 18 and there is no telling how long it had been growing. If I can prevent my children from dealing with cancer, I want to start now and do what it takes. I am looking into getting a second opinion or finding a hospital that will be willing to test my children now. I have read too many stories of children that are the same age as my children dying before a parent finding out that Lynch Syndrome was a factor. I can't let that happen to my kids! Does anyone know of such a hospital that will test this young? I need peace of mind that they are not dealing with this and if they are, I need to be sure that we are doing everything in our power to prevent cancer and catch it early.
deleted_user
deleted_user
BillyHall4
Where are you located? Did they tell you how old they have to be on order for it to be unethical? I ask because I am almost sure that my cousin was tested prior to being 18. I also recall my mother asking me if I were planing on testing my children as babies when I have them. She is a nurse and I would think if it weren't allowed she would have known.
This really perplexes me because I am a firm believer in preventative care and having a diagnosis allows for early screenings, especially with your husbands early original diagnosis.
Good luck with your difficult decision.
Christie
Group Founderimsb1
imsb1
The Lynch protocol states that testing should begin 10 years prior to the diagnosis of the youngest person in your linage receiving the Lynch Positive diagnosis. My granddaughter, age 12 1/2, had her genetic testing and subsequent endoscopy and colonoscopy just completed at U of Michigan Mott Children's hospital and will be followed by a Pediatric Gastroenterologist until she is 18 yrs when she will continue testing with Adult GI. Please get a second opinion, I believe you were given the wrong information or misunderstood. Good Luck! imsb1
deleted_user
deleted_user
The idea that it is unethical depends on the physician, I think. The doctor involved with my genetics counselor and my Lynch diagnosis felt similarly without actually using "unethical." However, as I've increased my contacts and information about Lynch, the idea of it being unethical is not necessarily common. To be candid, as an expectant father who is Lynch positive (MLH1), I find it offensive that a doctor thinks it unethical to undergo preventive care. It should be your decision as to when you have your children tested. If you feel strongly about finding out if your children have Lynch, you will be able to find a physician who understands your point of view.
AnnieG522
AnnieG522
My 4 kids were in their mid to late 20's when I was diagnosed. I think the ethical dilemma with Lynch and younger children is, once you know, do you move forward for prophylatic treatment in the most common cancer areas in your familial group. I think preventative testing is good, but what if you find something? Are you going to push for a cololectomy? And having had lots of colonscopies, and now sigmoidoscopies, I can't imagine being 8 years old and having one.

Very personal. I would contact a hospital ethicitist about the question.
tennisgal
tennisgal
I hope you find a hospital that understands the gravity of Lynch. My nephew's 13 year old had stage 3b colon cancer, as did I at the same time. The children's hospital took a long time diagnosing him.
Group Founderimsb1
imsb1
Just checking to see if you were able to find a hospital to test your kids? A large hospital with a children's speciality center would be you're best option. Good luck. imsb1
pterrasi
pterrasi
The literature I was given when I was diagnosed states that testing should begin ten years sooner than the youngest person diagnosed. My son, also diagnosed with Lynch Syndrome (Muir Torre) was 37 so his children would be tested at 27. That being said, I was diagnosed at 55 and my three children were all tested in their twenties and thirties. I think it depends on the insurance company and if children are young.
Ali47
Ali47
I appreciate the question and the comments on this particular topic. I am currently faced with this challenging question as my 7 year old was diagnosed with cancer this year. Although his cancer is not necessarily associated with Lynch Syndrome, it is my understanding that children with cancer have an increased risk of developing other cancers. If my child is predisposed, my question is will that increase his chances of developing cancer associated with Lynch Syndrome? I was diagnosed with Lynch (MSH2) and always planned on testing my children when they were older as recommended. I am trying to figure out if I should have this done now through his treating oncology doctors. My genetic counselor has offered her concerns about testing at a young age, but the oncology doctor is open to testing. My gut says to go ahead with the testing, but admittedly I am conflicted a little. My main mantra remains the education is power. Sorry to not offer a good solution, but I remain empathetic to those struggling with this decision.