I have Lynch Syndrome which is a lot of screenings that insurance does cover. You might consider having your doctor submit paperwork to your insurance before your screenings and verify they will cover it. Do you follow at mayo? My doctors at mayo are very familiar with Lynch.
I am was thrown into early menopause because of Lynch which was rough. I had my uterus and ovaries out. They found premalignant cells in my uterus. It is hard because not everyone understands the emotional impact of Lynch unless they have it.
I never miss an appointment! However, I wish insurance would pay for all of these cancer screenings.... Just because I am not "of age" for cancer screenings they all come out of pocket for me :/.
You may want to call and talk this over with your insurance. Perhaps, with a doctor letter and/or documentation, they may consider paying for your screenings.
@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!
I never miss an appointment! However, I wish insurance would pay for all of these cancer screenings.... Just because I am not "of age" for cancer screenings they all come out of pocket for me :/.
@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!
Colleen and @bevers89 Right. Lynch is a rotten egg in the carton of life. I am not sure how it works, but I have a bunch of stuff which respond to the name of Lynch Syndrome. Anyway, If I am fortunate, I will find a doc before I am 100 years old who has their stuff together and can deal with Lynch. But there is always something new coming along. I just learned this morning that a couple of my mutations came on because of bad water some time long ago, probably around 50-60-80 years back. PPPHHHHTTTTT!!!! 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!
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
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.
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?
@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:
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I have Lynch Syndrome which is a lot of screenings that insurance does cover. You might consider having your doctor submit paperwork to your insurance before your screenings and verify they will cover it. Do you follow at mayo? My doctors at mayo are very familiar with Lynch.
I am was thrown into early menopause because of Lynch which was rough. I had my uterus and ovaries out. They found premalignant cells in my uterus. It is hard because not everyone understands the emotional impact of Lynch unless they have it.
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1 ReactionYou may want to call and talk this over with your insurance. Perhaps, with a doctor letter and/or documentation, they may consider paying for your screenings.
-
Like -
Helpful -
Hug
3 ReactionsI never miss an appointment! However, I wish insurance would pay for all of these cancer screenings.... Just because I am not "of age" for cancer screenings they all come out of pocket for me :/.
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Like -
Helpful -
Hug
1 ReactionColleen and @bevers89 Right. Lynch is a rotten egg in the carton of life. I am not sure how it works, but I have a bunch of stuff which respond to the name of Lynch Syndrome. Anyway, If I am fortunate, I will find a doc before I am 100 years old who has their stuff together and can deal with Lynch. But there is always something new coming along. I just learned this morning that a couple of my mutations came on because of bad water some time long ago, probably around 50-60-80 years back. PPPHHHHTTTTT!!!! oldkarl
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Like -
Helpful -
Hug
1 Reaction@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!
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
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.
I have Lynch too. Yay for a bunch of cancer screenings for our whole lives!
@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?
Thanks for your quick response! Moo1