share this tool:
MyLynch: A Cancer Risk Tool for People with Lynch Syndrome
MyLynch was built by cancer researchers and statisticians from the BayesMendel lab at Dana-Farber Cancer Institute and Harvard University to help people with Lynch Syndrome (LS) understand how their LS can increase the risk of different cancers and to show them what they can do to lower their risks.
MyLynch is new and we are seeking YOUR input to help us improve this website; there will be a link to a user survey at the end of the tool so please give us feedback.
What is Lynch Syndrome?
Lynch Syndrome (LS) is a condition passed down through families that affects about 1 in 300 people in the United States. People with LS have a significantly increased likelihood of developing one or more cancers throughout their lifetime, with colorectal cancer being the most common. As LS research has evolved, many other cancers have also been linked to LS however, advances in medicine have also found effective ways to prevent and treat these cancers.
LS is caused by a pathogenic mutation on one of five genes:
- MLH1
- MSH2
- MSH6
- PMS2
- EPCAM
There are tests available for LS, both commercially and through your doctor, to detect if you have a pathogenic mutation on one of the genes above. If someone in your family has been diagnosed with LS, or your family has a history of cancer, you may have LS and you should talk with your doctor about getting tested.
People diagnosed with LS are often referred to a medical specialist called a genetic counselor. Your genetic counselor will work with your doctor to make a plan to manage your LS.
Dana-Farber has a dedicated site for LS where you can learn more: click here
What Does MyLynch Do?
This tool is based on a large body of medical research that links specific LS genes to different cancer types. The research shows that for people with LS, risk for these cancers varies widely from person-to-person based on several factors such as which gene is causing their LS, their sex, their age, and other factors. This tool will lead your through a series of steps and in the end, you can get a personalized report that tells you:
1. Which cancers you are at risk for due to LS.
2. What your chance of getting each cancer is.
3. What you can do to lower those risks.
The visualization below are just some examples of what you'll see when using MyLynch.
Lowering Your Risk
Based on your unique characteristics you may have options to lower your risk for cancer such as losing weight, taking aspirin, colonoscopies, or even electing to have preventative surgery. No two people are the same, so the options you have for lowering your risk may be different from someone else’s options.
Your Personalized Report
Near the end of the tool, you will build a personalized report which you can download or email to your doctor or genetic counselor. If you choose, you can also send it to a family member or trusted friend.
Sharing the tool
Because LS is an inherited condition, you may have family members who have LS but are undiagnosed. You can share this tool with family members to motivate them to get tested for LS and help them understand their risks. There are share buttons in the top right corner of the website and these buttons will appear again in the last step. Don't worry, these buttons only share the link to this tool; they do not share any information that you enter, nor do they share your personalized report.
Your Privacy
Because we are a hospital, we take patient privacy very seriously. This website will ask you for basic information like your age, sex, Lynch gene, and more, but rest assured that we do not share this information with anyone, nor do we store this information anywhere. No one can see your information except you due to this site’s security features.
Staying Up-to-date
LS research is evolving rapidly, and as it does, we will continually update and improve this site with the latest LS information, including any new associated LS cancers and risk reducing options.
What MyLynch Does Not Do
MyLynch can aid in making informed decisions but, it does not replace the advice of a medical doctor. Consult your doctor for all LS questions and before making any LS related decisions.
Getting Started
First, you will need to know your Lynch gene to use the tool. If you do not know your Lynch gene, ask your doctor first and then come back.
You can take as little or as much time as you want to go through the tool, but for first time users it is recommended to set aside about 10 to 30 minutes.
When you are ready to begin, click the button below or go to the 'Get My Cancer Risks' tab.
Assumptions and References
For technical notes on the assumptions used to calculate the impact of risk reducing interventions used in this tool and for a list of references click here.
MyLynch: Your Personal Cancer Risk
Navigating the Tool
This tool will take you through several screens which you can follow with the progress bar at the top. When you are done with a screen, look for the Continue and Back buttons at the bottom to move on or go back.
You can take as little or as much time as you want to go through the tool, but for first-time users, we recommended to set aside about 10 to 30 minutes.
Make sure you know which Lynch gene you have a mutation on. If you don't know this, ask your doctor and then come back.
CLICK CONTINUE TO PROCEED
My Profile
Things like your sex, current age, Lynch gene, and cancer history are crucial to calculating you cancer risks. Based on your Lynch gene and sex, you may be asked to enter other information like your height, weight, and some surgical history. Things like your race and ethnicity will help us further personalize your risk estimates.
We only ask for the bare minimum information needed to calculate your personal risk. We do not share this information with anyone, nor do we store this information anywhere. No one can see the information you enter except you.
Once you have answered all the questions, the continue button will appear at the bottom of the screen.
Select if you have had either or both of these surgeries:
You must enter a valid age from 1 to 80
My Body Mass Index (BMI):
Your height and weight determine your BMI which will help us customize your risk.
Enter a valid weight
My BMI is:
This tool provides estimates only for the first occurence of cancer therefore any cancers selected above will not be analyzed. For questions about the risks of any of your previous cancers returning, consult your doctor.
Based on the information you entered, this tool cannot calculate cancer risks for you. You have had (or have) each of the possible cancers related to your Lynch Syndrome gene.
Based on the information you entered, this tool cannot calculate cancer risks for you. You have had (or have) each of the possible cancers related to your Lynch Syndrome gene already and/or you have had a preventative surgery for some of these cancers already.
CLICK CONTINUE TO PROCEED
When you have entered all the necessary information, the continue button will appear below.
Possible Cancers
You have a higher risk for the following cancers, compared to someone without Lynch Syndrome. The list is ordered from your highest risk cancer to your lowest risk cancer.
Note: Consult your doctor to determine how frequently you should receive colonoscopies.
Although Colorectal Cancer risks without colonoscopies are very high in your case, note that the vast majority of people with Lynch Syndrome get regular colonoscopies at more frequent rates than the average person. Your chances of getting cancer while following your doctor's recommended colonoscopy schedule will be greatly reduced. Also, due to limited data, it is unclear how accurate estimates are for those who do not follow regular colonoscopy schedules.
You can learn more about any of these cancers on this page from Dana-Farber's Lynch Syndrome page: Click here
CLICK CONTINUE TO PROCEED
When you are done reading, hit continue.
My View
Before we look at each cancer in more detail, please tell us how you would like to view this information by picking your favorite visualization option below. Note, the data you see here are just examples, these are not your risks. Use the drop-down menu below to select option 1, 2, or 3 then click the continue button at the bottom of the screen.
CLICK CONTINUE TO PROCEED
When you have selected a display option in the drop-down the continue button will appear.
Visualize My Risk
Below you will see a visual with your cancer risks. The data behind the visuals you will see today came from a rigorous review of scientific data and peer-reviewed articles on Lynch sydrome.
First, let's start by taking a look at your colorectal cancer (CRC) risk in the display below because it is almost always the highest risk cancer for someone with Lynch. Here you can view your risk for CRC if you get or don't get regular colonscopies. As you can see, colonoscopies provide a great benefit!
Comparing your risk to someone without LS: Can you see how your risks compare to someone without Lynch Syndrome? The 'Average Person' being compared in the visual is someone with the same sex and age as you but who does not have Lynch syndrome.
Using this graph:
To add more cancers to the display, click them on using the checkboxes to the right.
1. Switch between different cancers by selecting them to the right.
2. Below the cancer options, you can switch between viewing your lifetime risk (by age 85) to viewing your risk in 5 years.
When you are done, scroll to the bottom and click the Continue button.
Note: Consult your doctor to determine how frequently you should receive colonoscopies.
Note: Lifetime risk is assumed to be until age 85.
Although Colorectal Cancer risks without colonoscopies are very high in your case, note that the vast majority of people with Lynch Syndrome get regular colonoscopies at more frequent rates than the average person. Your chances of getting cancer while following your doctor's recommended colonoscopy schedule will be greatly reduced. Also, due to limited data on people who do not do colonoscopies, it is unclear how accurate estimates are for those who do not follow regular colonoscopy schedules.
CLICK CONTINUE TO PROCEED
When you are done on this page, hit continue.
CLICK CONTINUE TO PROCEED
Unfortunately, the current Lynch Syndrome research has not yet discovered a way for you to lower your cancer risks. You can still create a personalized report though, just click the continue button.
My Risk Reduction Options
Depending on your Lynch gene, sex, and age your customized list of risk reduction options is below. Your options are based on the current Lynch syndrome research available for someone with your profile. As new research becomes available, we will update the tool.
You have options to lower your risk of Colorectal Cancer and Endometrial Cancer.
You have options to lower your risk of Colorectal Cancer and Ovarian Cancer.
You have options to lower your risk of Colorectal Cancer, Endometrial Cancer, and Ovarian Cancer.
You have options to lower your risk of Endometrial Cancer.
You have options to lower your risk of Ovarian Cancer.
You have options to lower your risk of Endometrial Cancer and Ovarian Cancer.
You have options to lower your risk of Colorectal Cancer. Your options are:
Colorectal Cancer options:
Endometrial Cancer options:
Ovarian Cancer options:
What else can I do to lower my risk?
There are additional ways to lower your risk for the cancers listed above and more. For example, regular exercise and avoiding tobacco are generally recommended, but it is difficult to measure the exact benefit for these on individuals with Lynch Syndrome due to limited data and research at this time. We are constantly looking for new studies that provide risk reducing options for individuals with Lynch Syndrome to add to this tool. General recommendations for lowering your risk for cancer can be found on the American Cancer Society website.
For technical notes on the assumptions used to calculate the impact of risk reducing interventions used in this tool and for a list of references click here.
CLICK CONTINUE TO PROCEED
When you are done reading, hit continue.
Visualize My Risk Reduction
Using this graph: The display below will show you how your risks change based on your options.
1. Select which cancers your want displayed. You can change these at any time.
1. Pick the cancer your want displayed. You can change this at any time.
2. Turn on the options under 'How can I reduce my risk?' to see how your risks will change. Experiment with different combinations of settings by turning them on and off.
2. Below the cancer options, you can switch between viewing your lifetime risk to viewing your risk in 5 years.
3. Turn on the options under 'How can I reduce my risk?' to see how your risks will change. Experiment with different combinations of settings by turning them on and off.
When you are done, scroll to the bottom and click the Continue button.
Note: Consult your doctor to determine how frequently you should receive colonoscopies.
Note: Consult your doctor to determine if you should be on an aspirin regimen and the dosage.
Note: Lifetime risk is assumed to be until age 85.
Although Colorectal Cancer risks without colonoscopies are very high in your case, note that the vast majority of people with Lynch Syndrome get regular colonoscopies at more frequent rates than the average person. Your chances of getting cancer while following your doctor's recommended colonoscopy schedule will be greatly reduced. Also, due to limited data on people who do not do colonoscopies, it is unclear how accurate estimates are for those who do not follow regular colonoscopy schedules.
CLICK CONTINUE TO PROCEED
When you are ready to to move on, hit continue.
My Report
This screen will allow you to create a customized cancer risk report with the cancers and risk reduction options you want. You will be able to download the report or email it to yourself, your doctor, or genetic counselor.
Using this graph:
1. Select the cancers and risk reduction options you want on your report.
1. Select the cancers, future age, and risk reduction options you want on your report.
2. Click the download button at the bottom. The report will open automatically after it downloads.
Note: Consult your doctor to determine how frequently you should receive colonoscopies.
Note: Consult your doctor to determine if you should be on an aspirin regimen and the dosage.
Note: Lifetime risk is assumed to be until age 85.
Although Colorectal Cancer risks without colonoscopies are very high in your case, note that the vast majority of people with Lynch Syndrome get regular colonoscopies at more frequent rates than the average person. Your chances of getting cancer while following your doctor's recommended colonoscopy schedule will be greatly reduced. Also, due to limited data on people who do not do colonoscopies, it is unclear how accurate estimates are for those who do not follow regular colonoscopy schedules.
Download and Email Your Report
Use the buttons below to download and/or email your report.
We recommend that you share this report with your doctor and genetic counselor. If you want, you can also share your report with family members or trusted friends.
You must enter a valid email address.
Email sent!
CLICK CONTINUE TO PROCEED
When you are ready to to move on, hit continue.
Help your Family by Sharing
Did you know:
1. Lynch syndrome cancers are preventable and can be caught early... if the person knows they have Lynch syndrome. Catching cancers early means saving lives.
2. Only 1 in 100 people with Lynch syndrome know they have it.
3. Your parents, siblings, and kids have a 50% chance of having Lynch; your grandparents, aunts, uncles, cousins, and grandchildren are also at risk.
Sharing your Lynch diagnosis with your family can save their lives. Almost all people with Lynch syndrome share their diagnosis with their parents, siblings, and children.
But...
Some people never tell their other relatives.
Save a Life
You could save the life of a family member if you choose to share your diagnosis.
Your doctor can help you make a plan to tell your family or you can use a website like Kin Talk (kintalk.org).
You can also share the MyLynch website with your family using the buttons below. These buttons will only share the link to the website, not your personal information.
What did you think of MyLych?
Please give us your feedback to help us improve. Click here to fill our a brief user survey.
You have finished!
Thank you for using this tool; we hope you found it helpful. Remember to share your personalized report with your doctor and genetic counselor. You can now return to any of the previous screens to review your information and make updates.
DISCLAIMER:
This website is provided for informational purposes only. The content is not intended as a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your doctor or other qualified health provider with any questions you may have regarding your personal health or medical condition.
The content and design of this website are protected by U.S. and international copyright laws. This website or any portion thereof may not be reproduced, distributed, altered, or used in any manner, beyond your own personal and noncommercial use, without prior written consent from Dana-Farber Cancer Institute.
For technical notes on the assumptions used to calculate the impact of risk reducing interventions used in this tool and for a list of references click here.
