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Lynch syndrome management

Ann Chang's picture

What questions do you think are important to address about how to screen for cancer, when and what risk reducing surgery to have, and using medications to prevent cancer (chemoprevention)?


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Robin Dubin's picture

Do we need to show some research to get screening guidlines updated?  What guidlines are most important to get updated?

DAVID Dubin's picture

Not sure if there are actual screening guidelines when it comes to Lynch.  As an example however, if the anecdotal evidence is true that the amount of breast cancer associated with Lynch is rising, it needs to looked at.  

Katt's picture

 Brian, there are 10 mL and guidelines for management of individuals with Lynch syndrome. If you have not spoken to a genetic counselor about this, I would recommend you do so. You can go to NSGC.Orrick and search under find a genetic counselor. You can find someone in your area or someone Who can talk to you by phone. They will be able to provide you with a copy of the guidelines specific to you.

hrant guevreyan's picture

David , go to and search for non-polyposis syndrome or genitic/familial high risk assesment , eventualy you will get it . here is a link . go to page 24 .

Robin Dubin's picture

What is everone's opinion on research like this.  Do we need to do a study that would show the gaps in the current guidlines for genetic testing for Lynch syndrome?  Would that be the first step in getting towards updates testing guidlines?

Linda Wallace's picture

The link is Page Not Found - is this what you meant? The article states, "Our results indicate that nearly half of patients with breast cancer with a P/LP variant with clinically actionable and/or management guidelines in development are missed by current testing guidelines. We recommend that all patients with a diagnosis of breast cancer undergo expanded panel testing." If this is true for breast cancer it's likely true for other cancers as well. In my opinion all cancer patients should be offered genetic testing. I was Dx with breast cancer in 2012 and was offered BRCA testing only which was negative. Two years later skin cancer, then two years after that endometrial cancer - further genetic testing - and Lynch Dx. Now that costs for genetic testing are coming down it is reasonable step for all cancer paitents. I was offered 28-gene panel and this study recommends full 80+ gene panel.

Robin Dubin's picture

Yes, sorry.  The links don't seem to be working so well.  But yes the article talks about a breast cancer study that shows that current NCCN guidelines don't necessarily capture all of those who test positive for a pathogenic or likely pathogenic mutation.  In this study, 45% of those that test positive for a pathogenic or likely pathogenic mutation did not meet the guidelines for testing. So should we focus on doing a study that could likely show the same results for Lynch patients with the goal of expanding the guidelines or pushing for universal testing?  Whould this kind of study be a good use of our resources?

Katt's picture

Yes, I think so. I think we need more information about what cancers are associated. My husband has an emulator one mutation and has had basal cell carcinoma and now has squamous  so on his toe with Mets. We are in the middle of the diagnostic Odysseuy.

Also, should the sun exposure and the sunscreen be stressed? What about mouthwash with alcohol? His sister had breast cancer at 43 even though she has a mutation but Emma which one is the one that supposedly not associated with breast cancer. Is there a registry someplace where patients can put in family history and genetic status?

Shannon Masur's picture

We need universal screening guidelines for Lynch Syndrome.  The Lynch Syndrome screening protcool varies with each LS patient I speak to and that’s concerning to me. 

Lindsey Van Parys's picture

Agreed. Everyone I talk to seems to have different tests, see different specialists, etc.  It would be nice to have a more uniform approach. 

Linda Wallace's picture

Doctors need to be better informed about what Lynch is and how to guide patients and recommend survelliance. From the groups where I'm a member patient care is all over the map. Also NCCN guidelines do not include breast cancer or skin cancer as areas of risk. Many Lynch patients have skin issues and basal cell carcinoma is often dismissed as minor and only the result of sun exposure. All Lynch patients need to be examined regularly by dermatologist. 

Allison Burton-Chase's picture

Hi Linda-

I am a researcher who has an interest in providers lacking information about Lynch syndrome and have found that this is more common for people who get care in community settings than in comprehensive cancer centers. The lack of provider knowledge also seems to have a impact on the pateint-provider relationship. I agree that providers need better education, but the mechanism to provide that in an efficient way that will reach a significant number of community providers is not yet clear.

Brian Burton's picture

Linda, providers definitely have a lack of information regarding Lynch.  My gastroenterolgist still argues with me regarding annual colonoscopies, even though it was a recommendation I recieved from a Lynch researcher at MD Anderson.  I have read multiple journal arrticles on my own and know that Lynch cancers in the gastrointestinal tract manifest and proliferate at an accelrated rate, therefore requiring the yearly colonoscopies.  I have addressed this with my gastroenterologist and he still doesn't feel it is necesarry for me to have annual screenings even with my own perosnal history of two primaries, colon and adrenal cortcial carcinoma that were both microsatellite instability high cancers.

Linda Wallace's picture

Hi Brian - all I can say is ugh! I have read that Lynch cancers are most common in the right colon and more care and time are needed to examine Lynch patients in general. How are we to know what the doctor is doing and if we are getting thorough exam??? I also recently asked around about whether a colonic is option to laxative prep and I have not found any information except for one hospital back east that offers it. Managing this condition can feel like uphill battle.

Heather Hampel's picture


You are correct - the average time from an adenoma to a colon cancer in Lynch syndrome (called the "dwell time") is 3 years (that's average so it can happen faster or slower) compared to 10 years in the general public. If your gastroenterologist will not do your colonoscopy every 1-2 years as per the NCCN guidelines, I would suggest finding another one who will.

C.C.'s picture

I think we need more outcomes research about the age of hysterectomy or no hysterectomy for Lynch previvor women, and specifically on the safety of estrogen-only HRT in Lynch previvor women after hysterectomy.  Doctors vary widely on whether or not they recommend estrogen-only HRT for young, Lynch, previvor women. Would also love to see comparison data on rates of breast cancer (and perhaps other cancers) with BSO hysterectomy and no HRT, with BSO hysterectomy and HRT, with hysterectomy that leaves at least one ovary until later ages, and without hysterectomy.  There would be obvious problems with randomizing research like this, so maybe it would need to be more longitudinal, from large registries, etc.  

Erin-Louise House's picture

I agree that doctors need to be better informed about Lynch. I also want to agree that universal screening guidelines should be implemented especially throughout multiple countries/regions. I am Australian yet reside in the US. I had 2 very different care plans from each country with very different guidelines in regards to hysterectomy/oopherectomy and mastectomy. 

Susan Peterson's picture

The U.S. National Cancer Institute, National Institutes of Health, has prioritized the need to improve utilization of genetic testing and follow-up care for Lynch syndrome and other hereditary cancers through the issuance of a request for grant applications to identify ways to best deliver these services.  While this is not a short-term solution, hopefully this research will identify ways to improve the delivery of genetic testing and follow-up care in the long run. 

Linda Wallace's picture

Another area needing reform is how insurance covers Lynch survelliance. It is battle to get annual colonoscopy (and endoscopy) covered as screening rather than diagnostic. It's source of stress and confusion for patients with some doctors knowing how to code so it's covered and others saying no that Lynch colonoscopy is always diagnostic. Patients often have to do battle to get it covered and many are paying for what should be covered. Screening is covered 100% while diagnostic procedures have co-pays and co-insurance that vary alot.

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