Tested postive for Lynch Syndrome: Anyone have this?

Posted by Michaelb @bsox1901, Jun 13, 2016

Last year i tested positive for Lynch Syndrome. Does anyone else have this?

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I have the Lynch diagnosis but no family doctor. I am looking to see if there is a way to get the various preventative screenings done?

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I'm in that boat too.

When I received the diagnosis (from genetic testing after cancer diagnosis) it came with recommendations for various screenings. Did you receive something similar?

And, I also received a letter to send to my kids and siblings because they were at risk for also being in our boat. Did you get such a letter?

My relatively new primary care doctor ordered all the screenings recommended, and I've been doing those the last year.

Do you have a primary care doctor you can follow up with?

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My husband has this. If his experiences can be of any help, just ask. I think the main thing is to get a doctor that is familiar with it and get any suggested screenings

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@gdj

I'm in that boat too.

When I received the diagnosis (from genetic testing after cancer diagnosis) it came with recommendations for various screenings. Did you receive something similar?

And, I also received a letter to send to my kids and siblings because they were at risk for also being in our boat. Did you get such a letter?

My relatively new primary care doctor ordered all the screenings recommended, and I've been doing those the last year.

Do you have a primary care doctor you can follow up with?

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I was notified to get tested because my aunt lost her battle with cancer at age 38, and all her kids are positive. Long and short is we have moved provinces and I do not have anyone overseeing my care or ordering the screenings.

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@stefanieeveline

I was notified to get tested because my aunt lost her battle with cancer at age 38, and all her kids are positive. Long and short is we have moved provinces and I do not have anyone overseeing my care or ordering the screenings.

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Based upon what knowledge I have, I think you need to get tested. Find someone that does genetic testing. If you have Lynch Syndrome, doctors have advised my husband's nieces and nephews to start getting colonoscopies at the age of 20. Having an aunt die at 38 tells you that you need to take this seriously. It is worth it for you, even if you have to travel to get tested. The most common cancer it causes is colon cancer, and you could prevent it rather than treating it later. I hope you do not have Lynch Syndrome, but please act upon this to be sure. If you test positive, be sure you are getting regular gynecological care and be sure to bring this to your doctor's attention there, too. One of the next most common cancers caused by Lynch is uterine cancer, I believe. My husband found it when he already had advanced stomach cancer. Be sure you have a trusted doctor to oversee your are in the gastroenterology area.

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@stefanieeveline

I was notified to get tested because my aunt lost her battle with cancer at age 38, and all her kids are positive. Long and short is we have moved provinces and I do not have anyone overseeing my care or ordering the screenings.

Jump to this post

@stefanieeveline, you mention province so I assume you live in Canada, is that right?

Each province has a provincial authority through which you should be able to access free cancer screening without a doctor referral. For example
In Ontario https://www.cancercareontario.ca/en/get-checked-cancer
In Nova Scotia https://www.nshealth.ca/cancer/cancer-screening-and-early-detection
In British Columbia http://www.bccancer.bc.ca/health-info/screening

I just put in "cancer screening" and "province name" into a Google search.

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