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?
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
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?
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.
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.
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.
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.
Breast cancer 4/2022...recently had emergency surgery for a blocked bowel obstruction that has tested as malignant cancer 1.9 mm tumor. Removed with 12 inches of bowel and 18 lymph nodes that were negative.
Healing
My question...recently due to the colon cancer diagnosis had the DNA testing that came back for Lynch Syndrome, something I had never heard of.
Lynch Syndrome patients, did you do chemo after your colon surgery? Oral or infusion?
If so what did you have? How soon did you have a colonoscopy?
New to this network and new to MAYO. Have requested an appointment, since my oncologist specialized in breast cancer care. Thank you for being informative and kind in this very scary time in my life.
Breast cancer 4/2022...recently had emergency surgery for a blocked bowel obstruction that has tested as malignant cancer 1.9 mm tumor. Removed with 12 inches of bowel and 18 lymph nodes that were negative.
Healing
My question...recently due to the colon cancer diagnosis had the DNA testing that came back for Lynch Syndrome, something I had never heard of.
Lynch Syndrome patients, did you do chemo after your colon surgery? Oral or infusion?
If so what did you have? How soon did you have a colonoscopy?
New to this network and new to MAYO. Have requested an appointment, since my oncologist specialized in breast cancer care. Thank you for being informative and kind in this very scary time in my life.
@lindyruss, hearing you have Lynch syndrome sends you on an additional path of learning. Here are some discussions and an expert blog you might find helpful as you learn more:
In April 2025, I will be an 18-year survivor/person living with Lynch Syndrome. My father died at age 40 in 1967, so we didn't even know about genetic screenings back then. But because of his early death, I had been getting fairly regular colonoscopies and other screening tests. My colon cancer was detected during a routine colonoscopy in 2007. It was an early Stage 1 cancer and I only required a partial colectomy. No one recommended genetic testing prior to my cancer diagnosis, and it was strongly recommended by a gastroenterologist that I just happened to meet at a community medical school presentation on colon cancer screening and treatment. That was 4 days before my surgery. After surgery, I talked to my doctors about genetic testing and they thought it might be a good idea. Bottom line? Find a gastroenterologist who knows about Lynch Syndrome and who will recommend and advocate for early genetic screening for you, your siblings, and for any children who have parents who test positive. I've since been diagnosed with Muir-Torre Syndrome, which is a sub-category of Lynch Syndrome related to skin cancers. I've had probably a dozen surgeries for skin cancers. So here is another bottom line... Make sure you have a good dermatologist who understands Lynch Syndrome and Muir-Torre Syndrome. It takes a village of knowledgeable providers to work with a person with Lynch Syndrome, but a gastroenterologist, surgeon, dermatologist, and dermatology surgeon have been the most important providers in my life.
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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?
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?
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
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.
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.
@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.
Breast cancer 4/2022...recently had emergency surgery for a blocked bowel obstruction that has tested as malignant cancer 1.9 mm tumor. Removed with 12 inches of bowel and 18 lymph nodes that were negative.
Healing
My question...recently due to the colon cancer diagnosis had the DNA testing that came back for Lynch Syndrome, something I had never heard of.
Lynch Syndrome patients, did you do chemo after your colon surgery? Oral or infusion?
If so what did you have? How soon did you have a colonoscopy?
New to this network and new to MAYO. Have requested an appointment, since my oncologist specialized in breast cancer care. Thank you for being informative and kind in this very scary time in my life.
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1 Reaction@lindyruss, hearing you have Lynch syndrome sends you on an additional path of learning. Here are some discussions and an expert blog you might find helpful as you learn more:
- Dealing with Lynch Syndrome and Constant Screenings https://connect.mayoclinic.org/discussion/dealing-with-lynch-syndrome-and-constant-screenings/
- Lynch Syndrome & Colon Cancer https://connect.mayoclinic.org/discussion/lynch-syndrome-colon-cancer/
- Expert blog: Understanding Lynch Syndrome https://connect.mayoclinic.org/blog/gastroenterology-and-gi-surgery/newsfeed-post/understanding-lynch-syndrome/
What is your current treatment plan for colong cancer?
In April 2025, I will be an 18-year survivor/person living with Lynch Syndrome. My father died at age 40 in 1967, so we didn't even know about genetic screenings back then. But because of his early death, I had been getting fairly regular colonoscopies and other screening tests. My colon cancer was detected during a routine colonoscopy in 2007. It was an early Stage 1 cancer and I only required a partial colectomy. No one recommended genetic testing prior to my cancer diagnosis, and it was strongly recommended by a gastroenterologist that I just happened to meet at a community medical school presentation on colon cancer screening and treatment. That was 4 days before my surgery. After surgery, I talked to my doctors about genetic testing and they thought it might be a good idea. Bottom line? Find a gastroenterologist who knows about Lynch Syndrome and who will recommend and advocate for early genetic screening for you, your siblings, and for any children who have parents who test positive. I've since been diagnosed with Muir-Torre Syndrome, which is a sub-category of Lynch Syndrome related to skin cancers. I've had probably a dozen surgeries for skin cancers. So here is another bottom line... Make sure you have a good dermatologist who understands Lynch Syndrome and Muir-Torre Syndrome. It takes a village of knowledgeable providers to work with a person with Lynch Syndrome, but a gastroenterologist, surgeon, dermatologist, and dermatology surgeon have been the most important providers in my life.
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