CSN Login
Members Online: 7

You are here

Tested for Lynch Syndrome?

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2664
Joined: Mar 2013

Hey all.  After your biopsy or surgery, were you tested for Lynch?

My gyn onc's office called to ask if I wanted my biopsy to be tested.  They automatically test now, but back in 2012 when I was dx and had surgery they didn't.  I said 'sure'.  Goodness knows what this test if going to run on my insurance.

So my questions to you:  Did you have the test for Lynch?

Jairoldi's picture
Jairoldi
Posts: 220
Joined: May 2017

I was tested about 2 months post-surgery in 2017.  My results were negative.

cmb's picture
cmb
Posts: 437
Joined: Jan 2018

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.

MAbound
Posts: 943
Joined: Jun 2016

For whatever reason, my insurance would only approve testing by the geneticist for the BRCAA 1 & 2 genes even though I had blood drawn for more extensive genetic testing. We could have paid a couple of grand for more extensive testing, but didn't really understand the need for it at the time and passed. Regret that.

In any case, my gyn-oncologist really wanted me to be tested for Lynch Syndrome and went back door to do it because he has a daughter who is a pathologist. He sent my tissue to her for testing (about $200). Maybe that is what your doctor is proposing since it's sounds like he's focused on Lynch and is testing your biopsy tissue rather than sending you to a geneticist for a blood draw.

Besides Lynch, you'd probably find out if you have microsatellite instability or not (makes you eligible for immunotherapy should you need it) and if MLH-1 promoter methylation is detected or not. MLH-1 methylation is common in microsatellite unstable tumors and rarely occurs in Lynch Syndrome, but it can happen, so then they also correlate your results with what's called Amersterdam II criteria for Lynch Syndrome: 

https://www.lynchscreening.net/development/diagnostictumor-testing-criteria/

This is all for testing of tissue as opposed to having blood drawn for more extensive genetic testing. Hope this is kind of what you were asking about.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1584
Joined: Jun 2015

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

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2664
Joined: Mar 2013

You ladies are the bomb!  

(BTW - I forgot the colonoscopy part!) 

CheeseQueen57's picture
CheeseQueen57
Posts: 850
Joined: Feb 2016

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

Tamlen's picture
Tamlen
Posts: 229
Joined: Jan 2018

I was also tested for Lynch; I had to ask. No insurance problems, negative results.

LisaPizza's picture
LisaPizza
Posts: 257
Joined: Feb 2018

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.

Fridays Child
Posts: 119
Joined: Jul 2019

After I had a late recurrence of grade 1, stage 1A garden variety endometrial cancer, they went over my family history again and suggested genetic testing.  No Lynch, no other identifiable hereditary cancers.  Apparently there were enough qualifying types that the insurance didn't argue with that one.

BluebirdOne's picture
BluebirdOne
Posts: 249
Joined: Jul 2018

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.

EZLiving66's picture
EZLiving66
Posts: 1374
Joined: Oct 2015

Nope, they never mentioned it, maybe because I have a so little cancer in my family?

Love,

Eldri 

Northwoodsgirl
Posts: 570
Joined: Oct 2009

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's picture
NoTimeForCancer
Posts: 2664
Joined: Mar 2013

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. 

MAbound
Posts: 943
Joined: Jun 2016

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's picture
cmb
Posts: 437
Joined: Jan 2018

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.

MAbound
Posts: 943
Joined: Jun 2016

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

Northwoodsgirl
Posts: 570
Joined: Oct 2009

Correct CMB! 

Yes, It is on every online job application that I have seen. From what I have read if one doesn‘t claim to have had one of the many diagnoses considered to have caused a disability then the employer is not obligated to make reasonable accommodations at work to enable you to do your job.

Sadly there is discrimination at work against people who have had chronic or catastrophic health issues. Many people who use the Family Medical Leave Act (FMLA) find themselves unemployed shortly after exhausting benefits.

Companies will never admit to discrimination of course due to litigation exposure.  Minnesota is an “at-will” employment state meaning the company nor employee needs a reason to disengage employment. I would not tell an employer that I have a disability by virtue of being a cancer survivor- neuropathy, lymphedema “ yada yada”. 

Subscribe to Comments for "Tested for Lynch Syndrome?"