Lynch Syndrome

[jbelle]

My mum died of bowel cancer when she was 46. My brother, who is only 33, has just had his whole colon removed because of colon cancer. I am currently on the waiting list (Australia) to have genetic counselling. We have colon cancer on both sides, what are the chances of having Lynch Syndrome if both parents have it? Im not sure I really want the answer It is a big worry.

Because of the high risk of endo and ovary cancer, is it recommended women have a full hysterectomy after kids?

[JAZZToo]

It is important to know if you have Lynch syndrome because there are steps you can take to prevent or detect at the earliest stage Lynch related cancers. Close screening surveillance - a colonoscopy every year or two, removal of the uterus and ovaries for women after childbearing is complete or by age 40 or so. Although endometrial cancer usually has symptoms at the earliest stages, ovarian cancer is often silent until it is quite advanced, thus removal is recommended as a preventative measure. The reason for removal of the entire colon as an alternative to yearly colonoscopy is that with Lynch a person can develop a second or third colon cancer during one's lifetime.

The genetic mutation for Lynch is a dominant one, meaning that only one parent has to have it to pass it on - a 50% chance to their children. This is another reason to be tested, cause if positive, your children, parents, and sibling would need to be tested too, to institute preventative surveillance if positive to avoid or catch at the earliest stages any developing Lynch related cancers.

Leslie
Lynch Syndrome
2003. Colon cancer
1995. Endometrial cancer

[-Sophie-]

Colon cancer is very common so it can look like it is genetic but that is not always the case. Early onset is a factor towards lynch syndrome.

I have just gone through the screening tests in Australia. Very positive experience in terms of assistance. I am lynch positive with no family history.

Your chances of having lynch syndrome are based on wether your parents had it. One positive parent will give you a 50% chance of having the same gene mutation.

They familial cancer centre will give you all the details for checks to be done based on your category (lynch positive, suspected, negative).

[Nickmark59]

They kept insisting my crc was genetic but found no sign of lynch syndrome

[JAZZToo]

Unfortunately all of the Lynch genetic mutations haven't been discovered yet. I was told i didn't have Lynch until the PMS2 mutation was found and a test to detect it developed, and i tested positive for it.
If Lynch is suspected but tests are negative, close preventative surveillance is still recommended, because the colon cancer may be due to a yet to be determined mutation.
Leslie

[barbara jayne]

I'm classed as Lynch positive, but have not had the culprit gene identified as yet, they were very hopeful mine was going to be PMS2 after ruling out all the others but alas it's not that one either.
In the meantime Myself & my children & sister all get colonoscopy screening every 2 yrs, while they will keep on looking for the gene.
Jbelle, there is an Australian based facebook page if you are interested I think it's called "The Lynch Effect"
Best wishes hope you don't have to wait too long to find out.

Barbara x