Teresa, how old should children be before they are tested for Lynch Syndrome. Their grandmother and Dad have the mutation and are checked
regularly. The parents want to make sure the kids won’t be lose health insurance and /or life insurance before and if laws change. They plan to have
them tested between ages 18 and 21 years old. Knowing too early could be an emotional burden on these kids. Father and grandma have scans
and scopes yearly. Please advise! Their parents are savvy and make sure they have all their checkups and vaccines. Both are currently healthy!
Moo1
Colleen Young, Connect Director | @colleenyoung | Feb 18, 2019
@moo1, generally genetic testing isn't done until children are at least 18 from what I've read. It can be a huge emotional burden. Here are a couple of useful articles:
@moo1, generally genetic testing isn't done until children are at least 18 from what I've read. It can be a huge emotional burden. Here are a couple of useful articles:
this Dec. 2017 I will have and endoscopy and proctoscope. Jan 2018 is the bladder scan. Past MRI shows that have many nodules in my lungs but they have been stable over the past year. The last endoscopy showed pre-cancerous cells in my stomach, so I'm kinda anxious to see what the upcoming scope shows. Not presenting any symptoms for stomach cancer but do get out of breath just walking cross the street, which very uncomfortable feeling.
@mims391
I noticed that you were scheduled for some follow up tests over the past year and a half and I was wondering how you were doing.
If you are comfortable doing so, will you post an update?
A bunch of people in my husband's family (including him) have this. I know it causes you a bunch of screenings but, trust me, that is far better than getting the associated cancer. Many many people in his family have had colon and other digestive system and uterine cancers. It is fortunate to know you have it so you can head them off.
A bunch of people in my husband's family (including him) have this. I know it causes you a bunch of screenings but, trust me, that is far better than getting the associated cancer. Many many people in his family have had colon and other digestive system and uterine cancers. It is fortunate to know you have it so you can head them off.
nrocpop, great question. my genetics say I have Lynch. and Myeloma. Many lab tests show the same, yet doctors, including Mayo, refuse to test me for more rare cancers, etc. I also have LGMD, which causes me great pain., all the time. I am convinced that good testing, earlier, would cut down on my two-bit surgeries. So far, I have had 55 cancer surgeries for many minor and a few major issues (CABG, etc.). But can I get a full whole genome sequencing? No way. Or a Serum Free Light Chain test? No way. Or a Full PET Scan? No way. I do not know whether these doctors are just lazy, don't want to work for their money? or is that just Samaritan or Mayo? Whatever. I am tired of being mistreated like this. For a person suffering with amyloidosis , a sFLC or full body PET scan can relieve years of suffering. oldkarl
@bevers89 and @nrocpop, it's a double-edged sword isn't it? You have a lifetime of close monitoring for cancer and all the cancer screenings because of Lynch. But you have a life time of close monitoring and cancer screenings. So many people don't do the screening that are effective and available for some types of cancers. I bet you never miss an appointment!
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@mims391
It appears that lung nodules can come from different sources like healed scar tissue, from an infection or from an irritant in the air. Here is a website that explains more, https://www.thoracic.org/patients/patient-resources/resources/lung-nodules-online.pdf.
Yes, your fatigue could certainly be from other health issues.
Teresa
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1 ReactionHello Everyone,
I thought you might be interested in viewing this video by Mayo Clinic gastroenterologist and medical oncologist, Dr. Frank Sinicrope, M.D., about Lynch syndrome:
– Understanding Lynch Syndrome https://connect.mayoclinic.org/blog/gastroenterology-and-gi-surgery/newsfeed-post/understanding-lynch-syndrome/
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2 ReactionsTeresa, how old should children be before they are tested for Lynch Syndrome. Their grandmother and Dad have the mutation and are checked
regularly. The parents want to make sure the kids won’t be lose health insurance and /or life insurance before and if laws change. They plan to have
them tested between ages 18 and 21 years old. Knowing too early could be an emotional burden on these kids. Father and grandma have scans
and scopes yearly. Please advise! Their parents are savvy and make sure they have all their checkups and vaccines. Both are currently healthy!
Moo1
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1 Reaction@moo1, generally genetic testing isn't done until children are at least 18 from what I've read. It can be a huge emotional burden. Here are a couple of useful articles:
- Genetic Testing of Children for Lynch Syndrome https://www.curetoday.com/community/georgia-hurst/2018/11/genetic-testing-of-children-for-lynch-syndrome
- Mayo Clinic Q and A: Lynch syndrome and genetic testing https://www.curetoday.com/community/georgia-hurst/2018/11/genetic-testing-of-children-for-lynch-syndrome
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2 ReactionsThanks for your quick response! Moo1
@mims391
I noticed that you were scheduled for some follow up tests over the past year and a half and I was wondering how you were doing.
If you are comfortable doing so, will you post an update?
I have Lynch too. Yay for a bunch of cancer screenings for our whole lives!
A bunch of people in my husband's family (including him) have this. I know it causes you a bunch of screenings but, trust me, that is far better than getting the associated cancer. Many many people in his family have had colon and other digestive system and uterine cancers. It is fortunate to know you have it so you can head them off.
nrocpop, great question. my genetics say I have Lynch. and Myeloma. Many lab tests show the same, yet doctors, including Mayo, refuse to test me for more rare cancers, etc. I also have LGMD, which causes me great pain., all the time. I am convinced that good testing, earlier, would cut down on my two-bit surgeries. So far, I have had 55 cancer surgeries for many minor and a few major issues (CABG, etc.). But can I get a full whole genome sequencing? No way. Or a Serum Free Light Chain test? No way. Or a Full PET Scan? No way. I do not know whether these doctors are just lazy, don't want to work for their money? or is that just Samaritan or Mayo? Whatever. I am tired of being mistreated like this. For a person suffering with amyloidosis , a sFLC or full body PET scan can relieve years of suffering. oldkarl
@bevers89 and @nrocpop, it's a double-edged sword isn't it? You have a lifetime of close monitoring for cancer and all the cancer screenings because of Lynch. But you have a life time of close monitoring and cancer screenings. So many people don't do the screening that are effective and available for some types of cancers. I bet you never miss an appointment!