Anxiety and questions about follow up and tubular adenoma

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O Stoma Mia
Posts: 1600
Joined: Sat Jun 22, 2013 6:29 am

Re: Anxiety and questions about follow up and tubular adenoma

Postby O Stoma Mia » Thu Dec 14, 2017 2:38 pm

scared0304 wrote:... My GI doctor did say that I needed to tell my siblings to get screened for polyps and cancer. Should I consider genetic testing? Would my insurance cover it considering my history? ... Any thoughts on that?

I'm sorry, but I don't have much information about genetic testing. I never had it done, and my doctor said that in my case it wouldn't be necessary or particularly useful, so I have not done much research on it. What I seem to remember, though, is that there are two different scenarios for genetic testing.

In one scensrio, they are focusing on the genetic mutations of the tumor itself, so they need to have part of a tumor to analyze. If a patient has never had a tumor, then there is no way to do that type of genetic test, and you can't ask your children to have that type of test either because they don't yet have any tumors.

Then there's another scenario where they can do a different type of genetic testing on blood samples or specimens of normal tissue. This kind of test can be done on anyone, whether they have cancer or not, but I think the test is very expensive (but I'm not at all sure) and insurance may not pay for it unless you have a good reason for doing it.

Of course, the objectives are different in the two cases, since they are looking for different types of mutations in the two scenarios. I'm sorry, but I don't have any more details than that.

In your case you have only a very small polyp, and I'm not sure what they can do with that with respect to genetic testing. They can look at the specimen with an electron microscope to determine its cell type, dysplasia, etc., but I'm not sure that they can do anything for genetic testing,since it is not yet a tumor, and probably not large enough to provide enough tissue to go through a formal genetic analysis procedure. Others with more experience in this area might have something more to say.

rockhound
Posts: 113
Joined: Fri Jul 14, 2017 5:00 pm

Re: Anxiety and questions about follow up and tubular adenoma

Postby rockhound » Thu Dec 14, 2017 11:40 pm

O Stoma Mia wrote:
scared0304 wrote:... My GI doctor did say that I needed to tell my siblings to get screened for polyps and cancer. Should I consider genetic testing? Would my insurance cover it considering my history? ... Any thoughts on that?

I'm sorry, but I don't have much information about genetic testing. I never had it done, and my doctor said that in my case it wouldn't be necessary or particularly useful, so I have not done much research on it. What I seem to remember, though, is that there are two different scenarios for genetic testing.

In one scensrio, they are focusing on the genetic mutations of the tumor itself, so they need to have part of a tumor to analyze. If a patient has never had a tumor, then there is no way to do that type of genetic test, and you can't ask your children to have that type of test either because they don't yet have any tumors.

Then there's another scenario where they can do a different type of genetic testing on blood samples or specimens of normal tissue. This kind of test can be done on anyone, whether they have cancer or not, but I think the test is very expensive (but I'm not at all sure) and insurance may not pay for it unless you have a good reason for doing it.

Of course, the objectives are different in the two cases, since they are looking for different types of mutations in the two scenarios. I'm sorry, but I don't have any more details than that.

In your case you have only a very small polyp, and I'm not sure what they can do with that with respect to genetic testing. They can look at the specimen with an electron microscope to determine its cell type, dysplasia, etc., but I'm not sure that they can do anything for genetic testing,since it is not yet a tumor, and probably not large enough to provide enough tissue to go through a formal genetic analysis procedure. Others with more experience in this area might have something more to say.


I had the blood testing originally, then tumor was tested.
42 yr old male
Diagnosed December 2016, age 41
Stage 1/IIA rectal cancer - T2/3N0M0 via MRI (MRI indicates stage 1; onc/surgeon = stage 2a)
Lynch syndrome, MSH6 mutation, MSI
2 to 3/2017 Xeloda + Radiation
5/10/17 - Robotic LAR with temp. loop illeostomy, 0/20 lymph nodes
6 to 7/2017 - Six cycles Folfox @ full strength
9/20/17 - Ileostomy takedown
10/17 - CT, NED
1/18 - 5mm polyp removed during colonoscopy
5/18 - CT, NED
11/18 - CT, NED
5/19 - CT, NED..moving to yearly CT scans

rockhound
Posts: 113
Joined: Fri Jul 14, 2017 5:00 pm

Re: Anxiety and questions about follow up and tubular adenoma

Postby rockhound » Thu Dec 14, 2017 11:48 pm

Pemba wrote:
Are all these data for "normal" population or Lynch syndrome folks, like me? If Lynch, then the process of polyp formation and also polyp turning to cancer can be greatly accelerated (e.g., as in 1 yr or 2). That's why the genetic information, esp. if you are young, is really important.. I would not want to be Lynch positive and have a polyp at 25, but not get rechecked until 30. There's a good chance insurance will cover the genetic testing given the polyp that has been found also, but best to check. Mine was covered nearly 100%, but the polyp was already cancer, so that might have played a role...


I did not write the original post, I think you may mix up the post. Yes I had a polyp at 25 original my next colonoscopy is by 2020. Yes it’s not normal and I am aware of that, I have not decided to get testet or not but I have read the Danish follow up schedule for Lynch positive people, it says every 2 yers a colonoscopy and gynaecological for women. So I’m gonna follow that and see if more polyps appears then I make the decision. My own doctor don’t think it’s Lynch because of the type and because it’s was bleeding for 1,5 yers without turning cancerous or even high grade dysplasi.

The original post is by a 42 year old and was a very very small polyp.

I understand and respect that it’s important getting Lynch testet BUT i also don’t think you should write devil on the wall. If you look at the % 80% of cancer is not genetic just accident and in Denmark Lynch is only around 2-5% FAP is more common.

So when a 42 year old had a very small benign polyp with a 1% chance of becoming cancerous over a period a 10 yers (if not lunch) I would not stress to much. If it was cancer by 42 THEN of cause get testet, but this was not anything like cancer and I would not stress about it.

Like you if you have cancer you will get genetic testing without problems but if you do not you need to match the Amsterdam criteria


My surgeon, GI doctor and a genetic counselor all recommended a colonoscopy every year; upper GI endoscopy every two years. This is mainly because of how fast the polyps can grow (and become malignant) in Lynch positive people. Mine was bleeding for at least a year, more likely 1.5 yrs in retrospect and when they saw it finally, had dysplasia. I was 41 at diagnosis- some of the genes that cause Lynch can cause cancers earlier (e.g., 20's) and a few others (like my mutation), can cause cancers later (e.g., start to pop up in 40's) but still earlier than the normal population. Apparently there is debate right now between whether starting the screening (annual colonoscopies, etc.) for all Lynch folks at 20-25 is the best protocol, or just for the group with the earlier-onset mutations; conversely start screening for folks for the other mutations later, like 35-40 yrs old. I totally agree about the benign polyp, but I had the same kind of polyp and it turned cancerous....only way to know if that thing was there for 10 yrs or 2 yrs would be genetic testing for Lynch and then assume fast growth if Lynch positive. Either way, colonoscopies are so important!
42 yr old male
Diagnosed December 2016, age 41
Stage 1/IIA rectal cancer - T2/3N0M0 via MRI (MRI indicates stage 1; onc/surgeon = stage 2a)
Lynch syndrome, MSH6 mutation, MSI
2 to 3/2017 Xeloda + Radiation
5/10/17 - Robotic LAR with temp. loop illeostomy, 0/20 lymph nodes
6 to 7/2017 - Six cycles Folfox @ full strength
9/20/17 - Ileostomy takedown
10/17 - CT, NED
1/18 - 5mm polyp removed during colonoscopy
5/18 - CT, NED
11/18 - CT, NED
5/19 - CT, NED..moving to yearly CT scans

Pemba
Posts: 84
Joined: Thu Aug 24, 2017 7:52 am

Re: Anxiety and questions about follow up and tubular adenoma

Postby Pemba » Fri Dec 15, 2017 3:45 am

rockhound wrote:
My surgeon, GI doctor and a genetic counselor all recommended a colonoscopy every year; upper GI endoscopy every two years. This is mainly because of how fast the polyps can grow (and become malignant) in Lynch positive people. Mine was bleeding for at least a year, more likely 1.5 yrs in retrospect and when they saw it finally, had dysplasia. I was 41 at diagnosis- some of the genes that cause Lynch can cause cancers earlier (e.g., 20's) and a few others (like my mutation), can cause cancers later (e.g., start to pop up in 40's) but still earlier than the normal population. Apparently there is debate right now between whether starting the screening (annual colonoscopies, etc.) for all Lynch folks at 20-25 is the best protocol, or just for the group with the earlier-onset mutations; conversely start screening for folks for the other mutations later, like 35-40 yrs old. I totally agree about the benign polyp, but I had the same kind of polyp and it turned cancerous....only way to know if that thing was there for 10 yrs or 2 yrs would be genetic testing for Lynch and then assume fast growth if Lynch positive. Either way, colonoscopies are so important!


Because we have universal healthcare in Denmark you are put in a screening program. Like if you have parents with Lynch or early colon cancer you’ll get testet by age 25 always.

And if you have Lynch you are entitled a colonoscopy every second year, they probably find it sufficient enough for most part.

If I did not agree I could go to a private hospital an pay for it myself, but with the genetic testing it’s another story. If the genetic Center don’t accept you you can’t pay for it yourself even if you wanted to, because there is no private genetic company’s

So I’ll definitely try to get in for testing, but if not possible I’ll make a deal with my doctor for erlyer colonoscopy and gyn and I’ll of cause be more aware of symptoms than before. I’ll comfort myself with that the Danish genetic Center says people with Lynch even though often get cancer have a better prognosis than people without.
Age: 26
2017: 15mm Tubulovillous adenoma- Low grade dysplasi.
Next scopy: original 2020 probably 2018-19

veckon
Posts: 131
Joined: Thu Jul 27, 2017 7:44 am

Re: Anxiety and questions about follow up and tubular adenoma

Postby veckon » Fri Dec 15, 2017 2:44 pm

Pemba wrote:Because we have universal healthcare in Denmark you are put in a screening program. Like if you have parents with Lynch or early colon cancer you’ll get testet by age 25 always.

And if you have Lynch you are entitled a colonoscopy every second year, they probably find it sufficient enough for most part.


I have nothing to add but praise for Denmark for doing this. Just, wow, it actually gives me some hope for humanity. It should make you proud that your country has prioritized compassion over profit.
27 yo male
Metastatic rectal cancer diagnosed 12/16
Liver metastases and peritoneal carcinomatosis
Lynch syndrome, MSI-H
Failed liver resection 3/17
FOLFOX6 12/16 - 05/17
Keytruda 5/17 - present
@Memorial Sloan Kettering

rockhound
Posts: 113
Joined: Fri Jul 14, 2017 5:00 pm

Re: Anxiety and questions about follow up and tubular adenoma

Postby rockhound » Sat Dec 16, 2017 12:38 am

veckon wrote:
Pemba wrote:Because we have universal healthcare in Denmark you are put in a screening program. Like if you have parents with Lynch or early colon cancer you’ll get testet by age 25 always.

And if you have Lynch you are entitled a colonoscopy every second year, they probably find it sufficient enough for most part.


I have nothing to add but praise for Denmark for doing this. Just, wow, it actually gives me some hope for humanity. It should make you proud that your country has prioritized compassion over profit.


Yes, this is great!!!!
42 yr old male
Diagnosed December 2016, age 41
Stage 1/IIA rectal cancer - T2/3N0M0 via MRI (MRI indicates stage 1; onc/surgeon = stage 2a)
Lynch syndrome, MSH6 mutation, MSI
2 to 3/2017 Xeloda + Radiation
5/10/17 - Robotic LAR with temp. loop illeostomy, 0/20 lymph nodes
6 to 7/2017 - Six cycles Folfox @ full strength
9/20/17 - Ileostomy takedown
10/17 - CT, NED
1/18 - 5mm polyp removed during colonoscopy
5/18 - CT, NED
11/18 - CT, NED
5/19 - CT, NED..moving to yearly CT scans


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