My grandmother had uterine cancer at 54 and then later in life had bladder cancer and in the end it spread to her bones and she passed away. My father had prostate cancer followed by liver cancer that they said started in the bile ducts, he also passed from cancer. I also had uterine cancer at 54 like my grandmother. I am 61 and have not had cancer recurrence so far. I also started having colon polyps in my 40’s as did my brother. One of his polyps was so big that the dr told him if he had waited one year there would have been nothing they could have done for him. I do annual screenings of colonoscopy , ureters, a yearly MRI of my pancreas, every three years of endoscopy with a second scope to look at my pancreas, yearly mammograms, yearly skin check from a dermatologist and also meet with genetics. I was tested and am MSH6. My son and one of my brothers were also positive. My brother and son do their yearly screenings as well. Thank you for making this video to promote awareness. There are so many drs who don’t even have a clue what I am talking about when I say lynch syndrome. Thankfully my OBGYN was very up on it and had me tested. She felt with family history there was a connection to lynch. Our family has a great team of drs and we all use the same drs to keep our history together. Awareness is so important to save lives. Thank you again.
Wow, you and your family has been through so much. Thanks for sharing your story. My mother has just been diagnosed with colorectal cancer and is getting tested for lynch syndrome. I’ve been sick awhile, and need to have tests made. It makes a lot of sense if my mother’s/grandmother’s bloodline has passed down lynch syndrome to me. I went to the doctor’s at 24 and got treated like I was making things up most of the time and dealt with a lot of sickness on my own. Here I am nearly 40, and I’m getting really bad after being better for many years. Hopefully I don’t go and get diagnosed with late stage cancer.
I have Lynch Syndrom. I got a Lynch tumor in my bile ducts. The surgeon tried to take the tumor out but unfortunately the cancer grew back. I then got immunotherapy, Nivolumab and within three months the cancer was gone. Immunotherapy, check point inhibitors often work exceptionally well on Lynch tumor if given before the patient had radiotherapy or chemotherapy. It is important to give immunotherapy to Lynch patients as a first line treatment. It then can be curative and not just palliative.
Immune checkpoint inhibitors work very well for Lynch because the tumors tend to be highly mutated. Therefore when the immune system is unleashed it can quickly recognize the abnormal tumor because of its high mutation burden. While it may cure that specific occurrence of cancer it’s important to distinguish it isn’t curing Lynch itself. The risk for new cancers remains.
Dr Cooper, this will be extremely helpful to everyone, I did not know all of this information because when I was told that I had Lynch Syndrome they were not as detailed as this video. You are super awesome Dr Cooper!
Thanks Mitchell. It means a lot you would find it useful since you're already an informed patient. I hope others impacted by the disease find it similarly useful.
Dr Cooper, even though your videos are short and to the point, it is amazing how much information that you can pack into them so that even an informed person can get some new information.
I have recently been alerted that I "may" have lynch syndrome. So far this is the best video I have found that explains what Lynch syndrome is in a way that is easy to understand. Thank you!
thank you, this helped me so much to understand, my 13 y/o brother just got diagnosed with Lynch and is battling stage 4 colon cancer. We are currently in gene testing since my dad, his sister, his uncle, and my Granda all got diagnosed with the BRCA gene.
I have lynch syndrome gene mutation mlh1, been fighting cancers for over 40 years if you have this gene mutation, keep up every bowel colonoscopy evey year
My father had lung cancer. His sisters died from skin and colon cancer. My paternal grandmother died from brain and bone cancer. Her sister had breast cancer. Cousin has ovarian cancer that killed her. Paternal grandfather died from kidney disease and leukemia. My dad's little brother just got diagnosed with bladder cancer. I myself have had polyps since 31 and every 5 years the polyps are bigger. I'm beginning to wonder if I should be tested for Lynch Syndrome.
My sister has recently been diagnosed with Muir-Torre Syndrome, which I'm sure you know is a rare subset of Lynch Syndrome. This diagnosis was made based on testing she had on some subaceous adenomas that were removed from her face. Her doctors are recommending her siblings and children get genetic testing done. The thing is, there is no history of cancer in our family. None! Can a hereditary condition be latent in some carriers? Or is this possibly a random mutation?
My 9 year old genetic testing popped up with msh2 gene but it says “uncertain significance” what does that mean? Does she have it or not? & should I push for a colonoscopy? She has Crohn’s disease
Dr. COOPER, my sister was just dx with Uterine cancer stage 1b w/mets to her lymph nodes stage 3, also she was dx with lynch syndrome, she is 52, I am 65, no ca dx, but I don't really go to Doctors like I should. should I get tested and is it a blood test? I have no Dx of CA. except precancerous skin areas. I'am right outside of Chicago. The answer to this is very important because my daughter a teacher has been having concerning symptoms for years, abnormal periods, cysts, night sweats, constipation, dry eyes(she had a procedure done/didn't work/she produces no tears) dry mouth, test so far negative, lip biopsy in sept at northwestern. The fact that her Aunt has lynch makes me more concerned for my daughter, 31. Thank you for any assistance.
My grandmother had uterine cancer at 54 and then later in life had bladder cancer and in the end it spread to her bones and she passed away. My father had prostate cancer followed by liver cancer that they said started in the bile ducts, he also passed from cancer. I also had uterine cancer at 54 like my grandmother. I am 61 and have not had cancer recurrence so far. I also started having colon polyps in my 40’s as did my brother. One of his polyps was so big that the dr told him if he had waited one year there would have been nothing they could have done for him. I do annual screenings of colonoscopy , ureters, a yearly MRI of my pancreas, every three years of endoscopy with a second scope to look at my pancreas, yearly mammograms, yearly skin check from a dermatologist and also meet with genetics. I was tested and am MSH6. My son and one of my brothers were also positive. My brother and son do their yearly screenings as well. Thank you for making this video to promote awareness. There are so many drs who don’t even have a clue what I am talking about when I say lynch syndrome. Thankfully my OBGYN was very up on it and had me tested. She felt with family history there was a connection to lynch. Our family has a great team of drs and we all use the same drs to keep our history together. Awareness is so important to save lives. Thank you again.
Wow, you and your family has been through so much. Thanks for sharing your story. My mother has just been diagnosed with colorectal cancer and is getting tested for lynch syndrome. I’ve been sick awhile, and need to have tests made. It makes a lot of sense if my mother’s/grandmother’s bloodline has passed down lynch syndrome to me. I went to the doctor’s at 24 and got treated like I was making things up most of the time and dealt with a lot of sickness on my own. Here I am nearly 40, and I’m getting really bad after being better for many years. Hopefully I don’t go and get diagnosed with late stage cancer.
I have Lynch Syndrom. I got a Lynch tumor in my bile ducts. The surgeon tried to take the tumor out but unfortunately the cancer grew back. I then got immunotherapy, Nivolumab and within three months the cancer was gone. Immunotherapy, check point inhibitors often work exceptionally well on Lynch tumor if given before the patient had radiotherapy or chemotherapy. It is important to give immunotherapy to Lynch patients as a first line treatment. It then can be curative and not just palliative.
Immune checkpoint inhibitors work very well for Lynch because the tumors tend to be highly mutated. Therefore when the immune system is unleashed it can quickly recognize the abnormal tumor because of its high mutation burden. While it may cure that specific occurrence of cancer it’s important to distinguish it isn’t curing Lynch itself. The risk for new cancers remains.
Dr Cooper, this will be extremely helpful to everyone, I did not know all of this information because when I was told that I had Lynch Syndrome they were not as detailed as this video. You are super awesome Dr Cooper!
Thanks Mitchell. It means a lot you would find it useful since you're already an informed patient. I hope others impacted by the disease find it similarly useful.
Dr Cooper, even though your videos are short and to the point, it is amazing how much information that you can pack into them so that even an informed person can get some new information.
I have recently been alerted that I "may" have lynch syndrome. So far this is the best video I have found that explains what Lynch syndrome is in a way that is easy to understand. Thank you!
You’re welcome! Glad it was helpful.
thank you, this helped me so much to understand, my 13 y/o brother just got diagnosed with Lynch and is battling stage 4 colon cancer. We are currently in gene testing since my dad, his sister, his uncle, and my Granda all got diagnosed with the BRCA gene.
I have lynch syndrome gene mutation mlh1, been fighting cancers for over 40 years if you have this gene mutation, keep up every bowel colonoscopy evey year
Thank you doctor. I always learn from your videos. God bless you
Thank you! That’s my goal.
My father had lung cancer. His sisters died from skin and colon cancer. My paternal grandmother died from brain and bone cancer. Her sister had breast cancer. Cousin has ovarian cancer that killed her. Paternal grandfather died from kidney disease and leukemia. My dad's little brother just got diagnosed with bladder cancer. I myself have had polyps since 31 and every 5 years the polyps are bigger. I'm beginning to wonder if I should be tested for Lynch Syndrome.
My sister has recently been diagnosed with Muir-Torre Syndrome, which I'm sure you know is a rare subset of Lynch Syndrome. This diagnosis was made based on testing she had on some subaceous adenomas that were removed from her face. Her doctors are recommending her siblings and children get genetic testing done. The thing is, there is no history of cancer in our family. None! Can a hereditary condition be latent in some carriers? Or is this possibly a random mutation?
My 9 year old genetic testing popped up with msh2 gene but it says “uncertain significance” what does that mean? Does she have it or not? & should I push for a colonoscopy? She has Crohn’s disease
Dr. COOPER, my sister was just dx with Uterine cancer stage 1b w/mets to her lymph nodes stage 3, also she was dx with lynch syndrome, she is 52, I am 65, no ca dx, but I don't really go to Doctors like I should. should I get tested and is it a blood test? I have no Dx of CA. except precancerous skin areas. I'am right outside of Chicago. The answer to this is very important because my daughter a teacher has been having concerning symptoms for years, abnormal periods, cysts, night sweats, constipation, dry eyes(she had a procedure done/didn't work/she produces no tears) dry mouth, test so far negative, lip biopsy in sept at northwestern. The fact that her Aunt has lynch makes me more concerned for my daughter, 31. Thank you for any assistance.
Yes, immediate family members should consider testing. I don’t know if some places near you may do saliva based testing.