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.
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:
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.
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.
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.
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?
@annewoodmayo I also have PMS2 and I follow with Dr. Boardman at Mayo in MN. She is really good and has a lot of patients with Lynch Syndrome. I also have auto immune diseases (Rheumatoid Arthritis and EOS Asthma). I unfortunately didn't find out about my Lynch until after we took out my uterus due to pre-malignant cells - that is the only reason we did genetic testing.
I would not rush into a radical hysterectomy without getting another opinion especially if you have no symptoms. I had symptoms - like a lot of pain and abnormal bleeding so I had signs something was wrong. If you still want kids I would wait - if you are done with having kids then it depends on what is best for you. I am not sure how old you are but I was 40 and it forced me into early menopause which was also tough for me so I wouldn't just rush into it.
My autoimmune disease complicates things too because I have to be careful about taking immunosuppressants. My doctors just recently approved me to start on one but they watch everything closely. It can be a lot
I would see if you can get an appointment with Dr. Boardman. Also there is a doctor in FL who is also up to date on it depending which location is better for you. Hope that helps. If you don't mind me asking what auto immune disease do you have?
Hi, Heather!
Thanks for your reply!
I have a PT appointment this morning so I need to watch my time. Sorry if my reply sounds abrupt!
I am 62 yrs old and post menopause, so fertility and sudden menopause are not issues for me. It must have been difficult for you...
I have had multiple diagnoses for the autoimmune crap: Lupus, not Lupus, spondyloarthropathy, sero-negative RA. I think the final one is "undifferentiated spondyloarthorpathy consistent with ankylosing spondylitis." I think this means that spinal bones grow in places they shouldn't and that causes pain. Also, pain in other joints. Bone growth in other places. Inflamation of cartiledge (chest, ribs, nose). Dry eyes, mouth. Gastro-intestinal issues like GERD and IBD. Skin is super dry and very sensitive to metals and fragrances and lanolin and adhesives. Frankly, my symptoms don't fit neatly into any one specific disease.
I have been on the immunosuppressant medication since about 2015. The only worrisome infection I got was one eye infected with uveitis. Used drops and it has not recurred. I do have chronic athletes foot! Ha! Stupid but a real, daily annoyance. Also, I've had significant dental infections, but I am bad about brushing and flossing.
The immuno drugs are scarey. I resisted taking them for about 3 years. I think it's good to ask yourself / remind yourself of the risk-benefit of the meds. When I decided to start taking them, I had reached the point of having lots of problems with normal life. I had clearly reached the point where the benefits outweighted the risk. In other words, I was willing to take the risk in order to get the potential benefits.
One of the real benefits of the immuno meds is the likelihood that they can stop the disease from getting worse. When I got Covid in Oct of 2020, I had a long interruption of my immuno meds, and, Boy! I did get worse! It's 27 months later and I'm still not back to where I was before Covid.
Regarding the infection with Covid-- I was a teacher and my school was live AND virtual at the same time (very difficult for teaching). I'm pretty sure I got Covid from one of my students. Her sister was absent at the time, and she was absent the week after my positive test. The school didn't tell us teachers officially who was absent with Covid, but the students did tell us!
I probably was more susceptible because of my meds but I needed to keep my health insurance so I had to work. Risk-benefit, again, but I lost haha!
The immunosuppressant meds have helped with low energy-- which is better but still my 2nd worst symptom-- AND with guts, eyes and skin. I can tell when I'm due up for another shot/infusion.
I take a daily pill (azathioprine, invented for organ transplant patients) and now evyer 8 weeks a shot of Tremfya. For me, all of the risks of the meds are worth the benefit. But Covid has really added a nasty social-isolation element.
I have tried to get all of my central docs (rheumatologist, gastro and skin and eye) all in the same medical association. They don't really talk to each other, but they know each other and have easy access to my records. The gastro, skin and eye doctors all seem at least a little scared of my rheumatologist. I consider that a good thing. They don't want to mess up with one of her patients.
You are lucky to be at Mayo. I live in Pennsylvania, near Philly. You would think that getting access to good care would be easy near so many academic institutions, but that has not been my experience. You have planted the idea of my getting a virtual appointment at Mayo...
Sorry this got so long and rambling and probably lost of misspellings! I have to get ready for PT right now.
I'd be happy to tell you more about my experience with the many, many meds I have taken.
Could you tell me more about the doctor at Mayo? Specifically, how deeply did she go into the PMS2 vs. the other Lynch genes? Did she discuss the exons? I've got 11,12 duplication. Did she discuss the most current research? Based on my research, the PMS2 carries very little risk for gyn cancers, which is my current issue. I'm back to risk-benefit analysis for the hysterectomy.
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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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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?
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.
-
Like -
Helpful -
Hug
1 Reaction@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.
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.
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'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?
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?
Hi, Heather!
Thanks for your reply!
I have a PT appointment this morning so I need to watch my time. Sorry if my reply sounds abrupt!
I am 62 yrs old and post menopause, so fertility and sudden menopause are not issues for me. It must have been difficult for you...
I have had multiple diagnoses for the autoimmune crap: Lupus, not Lupus, spondyloarthropathy, sero-negative RA. I think the final one is "undifferentiated spondyloarthorpathy consistent with ankylosing spondylitis." I think this means that spinal bones grow in places they shouldn't and that causes pain. Also, pain in other joints. Bone growth in other places. Inflamation of cartiledge (chest, ribs, nose). Dry eyes, mouth. Gastro-intestinal issues like GERD and IBD. Skin is super dry and very sensitive to metals and fragrances and lanolin and adhesives. Frankly, my symptoms don't fit neatly into any one specific disease.
I have been on the immunosuppressant medication since about 2015. The only worrisome infection I got was one eye infected with uveitis. Used drops and it has not recurred. I do have chronic athletes foot! Ha! Stupid but a real, daily annoyance. Also, I've had significant dental infections, but I am bad about brushing and flossing.
The immuno drugs are scarey. I resisted taking them for about 3 years. I think it's good to ask yourself / remind yourself of the risk-benefit of the meds. When I decided to start taking them, I had reached the point of having lots of problems with normal life. I had clearly reached the point where the benefits outweighted the risk. In other words, I was willing to take the risk in order to get the potential benefits.
One of the real benefits of the immuno meds is the likelihood that they can stop the disease from getting worse. When I got Covid in Oct of 2020, I had a long interruption of my immuno meds, and, Boy! I did get worse! It's 27 months later and I'm still not back to where I was before Covid.
Regarding the infection with Covid-- I was a teacher and my school was live AND virtual at the same time (very difficult for teaching). I'm pretty sure I got Covid from one of my students. Her sister was absent at the time, and she was absent the week after my positive test. The school didn't tell us teachers officially who was absent with Covid, but the students did tell us!
I probably was more susceptible because of my meds but I needed to keep my health insurance so I had to work. Risk-benefit, again, but I lost haha!
The immunosuppressant meds have helped with low energy-- which is better but still my 2nd worst symptom-- AND with guts, eyes and skin. I can tell when I'm due up for another shot/infusion.
I take a daily pill (azathioprine, invented for organ transplant patients) and now evyer 8 weeks a shot of Tremfya. For me, all of the risks of the meds are worth the benefit. But Covid has really added a nasty social-isolation element.
I have tried to get all of my central docs (rheumatologist, gastro and skin and eye) all in the same medical association. They don't really talk to each other, but they know each other and have easy access to my records. The gastro, skin and eye doctors all seem at least a little scared of my rheumatologist. I consider that a good thing. They don't want to mess up with one of her patients.
You are lucky to be at Mayo. I live in Pennsylvania, near Philly. You would think that getting access to good care would be easy near so many academic institutions, but that has not been my experience. You have planted the idea of my getting a virtual appointment at Mayo...
Sorry this got so long and rambling and probably lost of misspellings! I have to get ready for PT right now.
I'd be happy to tell you more about my experience with the many, many meds I have taken.
Could you tell me more about the doctor at Mayo? Specifically, how deeply did she go into the PMS2 vs. the other Lynch genes? Did she discuss the exons? I've got 11,12 duplication. Did she discuss the most current research? Based on my research, the PMS2 carries very little risk for gyn cancers, which is my current issue. I'm back to risk-benefit analysis for the hysterectomy.
Thanks so much! Sorry this is so long...