Tested for Lynch Syndrome?

I was tested for Lynch Syndrome after my hysterectomy. I assumed this was because both my parents had cancer, although neither fit the conventional profile of cancers caused by Lynch. My mother's cervical cancer wasn't considered a hereditary cancer. And my father's colon cancer wasn't diagnosed until his eighties – long after a Lynch-influenced cancer usually manifests itself.

After the tumor pathology suggested I might have Lynch, I had further genetic testing, which confirmed that I had inherited Lynch Syndrome from a parent. Of my three siblings who later got tested, my brother also has Lynch, but my two sisters do not.

I was glad the test was done after surgery as I wouldn't have thought to ask for this.

I did have to appeal the claim denial by my insurance company after I had the post-surgery genetic testing since I didn't fit the usual "profile" of someone with Lynch. I wrote a response that cited statements in their own medical policies. The insurer then decided to approve the claim. My two sisters had to pay a flat fee for the test since it wasn't covered by Medicare for them. My brother, who still had private insurance at the time, never mentioned if his test claim was approved or not.

I was tested for Lynch before I knew I had cancer. My sister has Lynch and my GYN NP pushed me to take the test. Mine was a bucal swab type test and my insurance did cover it.

I found out that I have Lynch the same day I found out I had cancer. (The same day I had a negative pap test result.!) Anyway, it's better to know than not. Doesn't change your life much except to be more vigilant with your checkups. That darn colonoscopy every two years is probably the most annoying. 

Love and Hugs,

Cindi

I was tested after surgery. It was routine at Fox Chase. No insurance problems. 

I had genetic testing because of my age (40s) and other cancers in my family (sister breast cancer age 36, father both multiple myeloma and then brain cancer, his mother both cervical and breast cancer, and both of her sisters had cancer). They did a panel (15 or so genes), and also a consult with the genetic counselor before and after. This was on Kaiser insurance, no fighting for it. Although, I think the whether the blood testing was done or not depended on the genetic counselor's decision. She did up a detailed family tree. I only ended up being a carrier for a cancer gene (MUTYH) but only have modest or possibly no increased risk because both genes aren't mutated. They don't advise any special screening, but advised to be sure I never skimp on the advised standard screening.

Due to family history, aunt with colon cancer death and another aunt with lung cancer death, my tumor was tested for Lynch at the time of my hysterectomy surgery. My tumor was tested for HER2 (was negative). Also they tested to make sure my tumor was actually uterine serous and not ovarian that had migrated. p53, p16 were positive, WT-1 was negative, which is interpreted as positive for uterine, not ovarian cancer. This was all done at the time of my initial surgery, with recommendation to test for MSI at a later date. I was not ruled out totally for Lynch, but the odds are small that I do have Lynch.

As I recall I met with genetic counselor back in 2009. My Mom died of uterine cancer at the age of 72 yrs old just 4 years before I was diagnosed. We were the same stage and grade.

I recall my tumor was tested for microsatellite instability and it came back “inconclusive”.  I was supposed to come back for a blood draw genetic test but was a “no show” because franklly I was just too overwhelmed with everything I was going through with my treatment. So this is something I need to look into yet at 10 years post treatment.

Ten years ago the insurance companies didn’t have very specific medical coverage criteria for genetic testing. They do now. I guess I was thinking about genetic testing from the perspective of “inheritance “ for future generations. I don’t have biological children. In hindsight I should have thought of genetic testing in terms of my own future risks but didn’t.  Hmmm??  Guess my self advocation was weak in terms of genetic testing. Plus it was very expensive. 

NoTimeForCancer said:

My gyn had suggested genetic

My gyn had suggested genetic testing, and since I don't have children like you, I asked her why?  She did say for myself and the future, but it could potentially benefit my sisters knowing - and I have four of them.  

Our parents died (eventually) of cancer - they were 92!!!  So things I think about - like MA - hmmmmmm

Need to add a footnote..  I am concerned about the 'information' being out there.  Can it someday be used against us?  I have filled out a few job applications, and since the positions I apply for are people I have worked with, they know I have had cancer.  On job applications, one of the Disabilities is:  Have or had cancer.  Lots of discrimination out there - and it is hard to prove.  Just saying. 

My ears perked up at you last paragraph. I get that employers need to ask if you have any disabilities that need accommodation because of the ADA, but I wonder if you can leave that unchecked if your having had cancer did not leave you with any disability that needs to be accommodated? Would not checking that box be considered lying on the application or could you argue that you left it out because it didn't seem to apply specifically to you?

If anyone one has access to a HR person, it would be really interesting/helpful to know how to handle that item on an employment application if it gets encountered. It's not that I'm looking to apply for a job, but I have a daughter treated for a tongue lesion over 10 years ago and is considered cured. She's likely at some time in her career to encounter this conundrum and being prepared for how to handle it would be very helpful.

cmb said:

Employment versus Insurance Applications

The Genetic Information Nondiscrimination Act of 2008 (GINA) is a federal law that protects individuals from genetic discrimination in health insurance and employment.

See the EEOC fact sheet at https://www.eeoc.gov/eeoc/publications/fs-gina.cfm

Many states also have their own version of this law, which may vary in some degree from the federal law.

See Illinois http://www.ilga.gov/legislation/ilcs/ilcs3.asp?ActID=1567&ChapterID=35 for an example of these state laws.

Generally employers can't ask about an applicant medical history without the permission of the applicant, unless there are specific physical conditions that the applicant would have to meet to do the job (ability to lift certain weights, etc.).

However, if an applicant doesn't disclose a present or past health condition on insurance applications for life, health, disability income, critical illness, and long-term care insurance policies that are offered through their employer, the person could be denied coverage for related claims or even rejected for coverage outright.

Thanks so much for that information. I am in awe of how knowledgeable you are!