Genetic Testing

[Andrea1976]

What is your experience with genetic testing? My mom and her sister both had breast cancer at age 50 and 51. They had it at the same time. Both fully recovered and heathy 16 years later.

We don't have any colon cancer in our family. I am being tested for Lynch. Should have results in few weeks. But because of the breast cancer I am being sent for extensive genetic testing to Southwestern in Dallas.

[BeansMama]

I am still waiting for my genetic testing results, I am being tested for Lynch as well. My mother is a 10 year survivor of endometrial cancer, my great aunt lost her battle with breast cancer many years ago. No history of colon in my family but the Lynch links endo and colon cancers.

The wait is killing me, I want to know for my daughter. If I am positive for Lynch she will need to get screened to see if she carries it as well. She will already have to start colonoscopies at 30, it would be better to know if she carries that too.

I just noticed you are in/around Dallas. I am over by Ft Worth myself

[Andrea1976]

I agree, it is scary:-( hope we both test Lynch negative. I am in Dallas:-) great weather this week!!!

[kandj]

My husband was tested for MAP and Lynch done by Ambrygenetics with something called ColoNext. Negative for everything. Just shitty luck.

[BeansMama]

I agree, it is scary:-( hope we both test Lynch negative. I am in Dallas:-) great weather this week!!!

It is beautiful out! I took a break from work this afternoon and went outside for some air. My walker and I made it another house farther on the street hooray! I wish I didn't have to come back into the office. One more hour and I am going outside again!

[Andrea1976]

That is great!!!

[UnicornOnTheJayneCob]

I am in the midst of my genetic testing now.

I had a colon resection last month, and the pathology showed the micro-satellite instability typical of Lynch syndrome. I also have some family history of colon and bladder cancer (grandpa) and ovarian and endometrial cancer (mom and aunt). And, I am only 37.

As a result, most of the doctors I have seen so far have told me I am a very likely candidate for Lynch.

Right now, my oncologist has taken blood and is having both it and the pathology (removed sections of my colon/tumor/lymph nodes) tested for Lynch. We are also going to be meeting with a genetic counselor next week.

However, my oncologist (she specializes in genetic GI oncology) feels that there are a number of factors in my case that “scream lynch” and that even without the results of the blood test back yet, that I absolutely have the disorder. Some of these include:

MSH2 and MSH6 loss staining on the tumor specimen
my age at diagnosis
family history of cancers at a young age (mom was in her thirties, aunt was in her twenties)
tumor appeared flat
No apparent cancer markers in blood tests

I DID not have:
Cancer on the RIGHT side of my body (more common in Lynch) - the mass was closer to the left.

Now we are just waiting for the lab’s confirmation - next week. I am still holding out hope that she (and the other three doctors) is wrong. It feels like having the “forever cancer.”

[Andrea1976]

Sorry to hear:-( hope you will not have Lynch. We don't have breast cancer but not any other cancer that I know in our family.

I am currently dealing if I should have colon resection or not... 1 surgeons says yes and 2 not to have it. Not sure what to do...

[Andrea1976]

Sorry to hear:-( hope you will not have Lynch. We have breast cancer but not any other cancer that I know in our family.

I am currently dealing if I should have colon resection or not... 1 surgeons says yes and 2 not to have it. Not sure what to do...

[Jachut]

My experience is that I have about sixteen second/third cousins and great uncles and whatnot that I never met or knew that have had bowel cancer, my father's maternal grandmother died of rectal cancer and my father's sister had a tumour in the transverse colon followed by uterine cancer a year later, which rang alarm bells regarding Lynch. I was tested - nothing found. I don't have lynch, or FAP. What I was told was that most likely there was something genetic involved but they just cant identify it yet. But it was also stressed that it all could be a huge coincidence - since none of those relatives are direct ones.

[Wonderfullymade]

I had a lot of the markers you are talking about including the tumor being on the right side ( ascending) but nothing positive in my blood work, my Onc said the same thing, that they just don't know which gene is controlling the "misspellings" yet.
I was quite concerned and was told by the genetic counselor that I would benefit from a full hysterectomy, and keeping a close eye on the other known areas of concern. Now that I am on the Prembro/Keytruda I asked him if that meant I didn't need to do all that...he said "well that is a good question, we don't know yet"
In my thinking if it will correct the problem in one area...it should correct them all! And I am going to remain positive that it will!!

[Wonderfullymade]

Oops meant to add. I had my entire colon removed out of concern that the cancer would return, I figured while he was there, and the surgeon agreed. Have you spoken to your Dr about your concerns and what is their opinion? I think it is a personal choice, I will most likely be living with this bag for as much time as I have on this earth, but I am not as anxious about that as some are as I see as saving my life. I have wondered if I was hasty now...but I am ok with the choice as I wouldn't want to undergo that surgery again!

[bathroom_tile_blues]

I've said this in a couple of other threads I think and I don't want to beat a dead horse, but being diagnosed with lynch isn't the worst thing in the world. All it means is more monitoring and a little more thoughtful family planning. There's also a lot of evidence out there that note that lynch related cancers are often not as aggressive as sporadic cancers. As long as you know you have it, your health and well being is in your own hands. This is evident in the multiple 20+ year survivors of lynch related cancers that I know.