Anxiety and questions about follow up and tubular adenoma

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scared0304
Posts: 13
Joined: Tue Dec 12, 2017 1:56 pm

Anxiety and questions about follow up and tubular adenoma

Postby scared0304 » Tue Dec 12, 2017 2:21 pm

I have been lurking for several days and I am so impressed by the wealth of information and support given on this website. I am hoping that someone can offer some insight after my recent procedure. After suffering from severe stomach pain and a change in bowel movements (loose stool, several times a day) since September I underwent an endoscopy and colonoscopy on December 1. For background, I am a 42 year old female with no known family history of colon cancer. Immediately after my exam I spoke with the doctor (I have Kaiser so I didn't pick the gastroenterologist I saw, it was first available appt) and he told me that he removed a small polyp from my ascending colon that would be sent to pathology. I don't remember alot of what he told me, but based on my husband's recount, the doctor said that it was unusual for someone my age to have polyps, but that polyps were not unusual. I asked him if he believed it was cancerous and he said highly unlikely but that is why he removed it entirely and sent it to pathology. I received the pathology results several days ago and I am feeling some anxiety about the results (full disclosure, I am a highly anxious person anyway). The polyp was a 5mm tubular ademona that was removed from the ascending colon. My doctor sent me an email with the results and basically told me that "tubular adenomas are pre-cancerous polyps that could have become cancerous if they had been left there for many years (although most never become cancerous), your polyp has been completely removed, but since you've had this type of polyp you should undergo another colonoscopy in 5 years. Additionally, you should advise your siblings to undergo screening for polyps and cancer." I received the pathology report but it doesn't give me any more information about the polyp ie dysplasia etc.

Five years seems like an awful long time, does that sound like a reasonable time frame? Should I seek a second opinion? What is the likelihood of developing more polyps and/or of this before 5 years? I guess I'm just looking for information from someone who has been there, this is not the news I was expecting, but I know that it's better than finding out the polyp has become cancerous. Any thoughts?

Pemba
Posts: 73
Joined: Thu Aug 24, 2017 7:52 am

Re: Anxiety and questions about follow up and tubular adenoma

Postby Pemba » Tue Dec 12, 2017 4:23 pm

Polyps at 5mm and under don’t often end up cancerous and tubular is the best look for it to have. Only around 10% of all Adeomas becomes cancerous that 90% that don’t.

They most often make the checkup scale 1, 3 or 5 years depends on the report. They know approximately how fast it takes for a polyp to grow, it normally takes around 5 years and then another 5-10 for it to turn cancerous.

So if I was you I would take it easy and wait the five years unless symptoms appear!

PS.
For it to be a 5 yers polyp, you can be sure it had low grade dysplasi, otherwise you would fall in another group :)
Last edited by Pemba on Tue Dec 12, 2017 5:58 pm, edited 1 time in total.
Age: 26
2017: 15mm Tubulovillous adenoma- Low grade dysplasi.
Next scopy: original 2020 probably 2018-19

rockhound
Posts: 83
Joined: Fri Jul 14, 2017 5:00 pm

Re: Anxiety and questions about follow up and tubular adenoma

Postby rockhound » Tue Dec 12, 2017 5:01 pm

scared0304 wrote:I have been lurking for several days and I am so impressed by the wealth of information and support given on this website. I am hoping that someone can offer some insight after my recent procedure. After suffering from severe stomach pain and a change in bowel movements (loose stool, several times a day) since September I underwent an endoscopy and colonoscopy on December 1. For background, I am a 42 year old female with no known family history of colon cancer. Immediately after my exam I spoke with the doctor (I have Kaiser so I didn't pick the gastroenterologist I saw, it was first available appt) and he told me that he removed a small polyp from my ascending colon that would be sent to pathology. I don't remember alot of what he told me, but based on my husband's recount, the doctor said that it was unusual for someone my age to have polyps, but that polyps were not unusual. I asked him if he believed it was cancerous and he said highly unlikely but that is why he removed it entirely and sent it to pathology. I received the pathology results several days ago and I am feeling some anxiety about the results (full disclosure, I am a highly anxious person anyway). The polyp was a 5mm tubular ademona that was removed from the ascending colon. My doctor sent me an email with the results and basically told me that "tubular adenomas are pre-cancerous polyps that could have become cancerous if they had been left there for many years (although most never become cancerous), your polyp has been completely removed, but since you've had this type of polyp you should undergo another colonoscopy in 5 years. Additionally, you should advise your siblings to undergo screening for polyps and cancer." I received the pathology report but it doesn't give me any more information about the polyp ie dysplasia etc.

Five years seems like an awful long time, does that sound like a reasonable time frame? Should I seek a second opinion? What is the likelihood of developing more polyps and/or of this before 5 years? I guess I'm just looking for information from someone who has been there, this is not the news I was expecting, but I know that it's better than finding out the polyp has become cancerous. Any thoughts?


You might consider getting tested for Lynch Syndrome, given your age.. If Lynch positive, then you want to have colonoscopies every year - polyps form and turn into cancer much faster than the rest of the population (like in 1 year or so where normally it might take 5-10 years), also upper GI scopes, and other check-ups as Lynch predisposes you for a number of other cancers. I'm Lynch positive and from here out, colonoscopy every year. If I would have known I had Lynch, I would have had one every year and my polyp that turned cancerous, would have likely been discovered.....The gene that I carry also is associated with a smaller number of hereditary cancers compared to other genes that are associated with Lynch- in my case, there was no obvious family history of colorectal cancer or other Lynch cancers that could be used a a big red flag when I first started having funny symptoms.
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-H
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 - Clear CT

Pemba
Posts: 73
Joined: Thu Aug 24, 2017 7:52 am

Re: Anxiety and questions about follow up and tubular adenoma

Postby Pemba » Tue Dec 12, 2017 5:44 pm

rockhound wrote:You might consider getting tested for Lynch Syndrome, given your age.. If Lynch positive, then you want to have colonoscopies every year - polyps form and turn into cancer much faster than the rest of the population (like in 1 year or so where normally it might take 5-10 years), also upper GI scopes, and other check-ups as Lynch predisposes you for a number of other cancers. I'm Lynch positive and from here out, colonoscopy every year. If I would have known I had Lynch, I would have had one every year and my polyp that turned cancerous, would have likely been discovered.....The gene that I carry also is associated with a smaller number of hereditary cancers compared to other genes that are associated with Lynch- in my case, there was no obvious family history of colorectal cancer or other Lynch cancers that could be used a a big red flag when I first started having funny symptoms.


Can I ask what kind of polyp you had that turned cancerous? Was it the flat kind or the mushroom kind ? I’m under the impression that Lynch often is associated with flat style polyps.

I’m probably gonna talk to my doctor about getting Lynch testet. But most places you have to match the Amsterdam criteria (I think it’s called)
Age: 26
2017: 15mm Tubulovillous adenoma- Low grade dysplasi.
Next scopy: original 2020 probably 2018-19

Ron50
Posts: 633
Joined: Fri Feb 10, 2006 7:04 pm

Re: Anxiety and questions about follow up and tubular adenoma

Postby Ron50 » Wed Dec 13, 2017 6:26 am

At my last scope (three and a half years from the previous one) They removed four tubular adenomas the biggest 11 mm. They had all grown in under four years. Both my GI and my Nephrologist were happy that they were tubular adenomas. They both agreed that they are the least likely to turn. All of mine had mild displaysia. The greatest concern from my gi was that they had grown so quickly. He said that mine would have developed into cancers in time. My original cancer was described by my surgeon as frightfully aggressive. He said he could almost see it growing. I will be on 2 yearly scopes from now on. Ron.
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo

User avatar
O Stoma Mia
Posts: 980
Joined: Sat Jun 22, 2013 6:29 am

Re: Anxiety and questions about follow up and tubular adenoma

Postby O Stoma Mia » Wed Dec 13, 2017 7:04 am

O Stoma Mia wrote:I don't think you need to worry right now. According to the MD Anderson protocol for colonoscopy followup, I think 5 years is normal if you have only one or two small tubular adenomas.

See document below, page 3
https://www.mdanderson.org/content/dam/mdanderson/documents/for-physicians/algorithms/screening/screening-colorectal-web-algorithm.pdf.
.
.

Note: If the cause is not hereditary, then there is a possibility that the cause might be life-style related and that you could do something about it. The article below about tubular polyps gives several possible life-style causes to consider. Are they doing any tests to rule out hereditary causes?
"You also can take these steps to help avoid both colon polyps and colon cancer:

Eat less fat and more vegetables, fresh fruits, and other high-fiber foods
Keep your weight in a healthy range
Avoid smoking and too much alcohol"
Ref. https://www.webmd.com/colorectal-cancer/colorectal-tubular-adenoma

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rockhound
Posts: 83
Joined: Fri Jul 14, 2017 5:00 pm

Re: Anxiety and questions about follow up and tubular adenoma

Postby rockhound » Wed Dec 13, 2017 10:07 am

Pemba wrote:
rockhound wrote:You might consider getting tested for Lynch Syndrome, given your age.. If Lynch positive, then you want to have colonoscopies every year - polyps form and turn into cancer much faster than the rest of the population (like in 1 year or so where normally it might take 5-10 years), also upper GI scopes, and other check-ups as Lynch predisposes you for a number of other cancers. I'm Lynch positive and from here out, colonoscopy every year. If I would have known I had Lynch, I would have had one every year and my polyp that turned cancerous, would have likely been discovered.....The gene that I carry also is associated with a smaller number of hereditary cancers compared to other genes that are associated with Lynch- in my case, there was no obvious family history of colorectal cancer or other Lynch cancers that could be used a a big red flag when I first started having funny symptoms.


Can I ask what kind of polyp you had that turned cancerous? Was it the flat kind or the mushroom kind ? I’m under the impression that Lynch often is associated with flat style polyps.

I’m probably gonna talk to my doctor about getting Lynch testet. But most places you have to match the Amsterdam criteria (I think it’s called)


It was a tubular adenoma; so I think it may have had a stalk. Also, you might consider seeing someone about the anxiety - I was in the same boat and talking to a Dr. and getting started on prozac basically made it disappear. Have not felt better mentally in years, even with the cancer diagnosis! Worth talking about/pushing for the genetic testing though if you are concerned, even given all the potential issues with genetic stuff and insurance, etc. I'd rather know what I now know...
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-H
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 - Clear CT

rockhound
Posts: 83
Joined: Fri Jul 14, 2017 5:00 pm

Re: Anxiety and questions about follow up and tubular adenoma

Postby rockhound » Wed Dec 13, 2017 11:26 am

rockhound wrote:
Pemba wrote:
rockhound wrote:You might consider getting tested for Lynch Syndrome, given your age.. If Lynch positive, then you want to have colonoscopies every year - polyps form and turn into cancer much faster than the rest of the population (like in 1 year or so where normally it might take 5-10 years), also upper GI scopes, and other check-ups as Lynch predisposes you for a number of other cancers. I'm Lynch positive and from here out, colonoscopy every year. If I would have known I had Lynch, I would have had one every year and my polyp that turned cancerous, would have likely been discovered.....The gene that I carry also is associated with a smaller number of hereditary cancers compared to other genes that are associated with Lynch- in my case, there was no obvious family history of colorectal cancer or other Lynch cancers that could be used a a big red flag when I first started having funny symptoms.


Can I ask what kind of polyp you had that turned cancerous? Was it the flat kind or the mushroom kind ? I’m under the impression that Lynch often is associated with flat style polyps.

I’m probably gonna talk to my doctor about getting Lynch testet. But most places you have to match the Amsterdam criteria (I think it’s called)


It was a tubular adenoma. Also, you might consider seeing someone about the anxiety - I was in the same boat and talking to a Dr. and getting started on prozac basically made it disappear. Have not felt better mentally in years, even with the cancer diagnosis!

Worth talking about/pushing for the genetic testing though if you are concerned, even given all the potential issues with genetic stuff and insurance, etc. I'd rather know what I now know...
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-H
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 - Clear CT

scared0304
Posts: 13
Joined: Tue Dec 12, 2017 1:56 pm

Re: Anxiety and questions about follow up and tubular adenoma

Postby scared0304 » Wed Dec 13, 2017 11:30 am

Thanks to all of you for your feedback..... I'm wondering if I told my PCP that I wanted a colonoscopy at 3 years instead of 5 years, if my insurance would cover it? Do any of you know the answer to that? As for the genetic testing is that something my insurance would pay for based on my history? What is the out of pocket cost for it? I'm more concerned for my children, the GI doctor recommended they start receiving colonoscopies at 35, one of them has celiac disease, does that put him at higher risk for colon cancer?

I also suffer from anxiety, have been in a tailspin for the last 6 months, health anxiety plays a big part, so finding the polyp has only increased the what if's and worst case scenarios ten fold. I am seeing a new therapist Friday and considering medication, it is good to know that Prozac has worked for you.

scared0304
Posts: 13
Joined: Tue Dec 12, 2017 1:56 pm

Re: Anxiety and questions about follow up and tubular adenoma

Postby scared0304 » Wed Dec 13, 2017 1:54 pm

Pemba wrote:Polyps at 5mm and under don’t often end up cancerous and tubular is the best look for it to have. Only around 10% of all Adeomas becomes cancerous that 90% that don’t.

They most often make the checkup scale 1, 3 or 5 years depends on the report. They know approximately how fast it takes for a polyp to grow, it normally takes around 5 years and then another 5-10 for it to turn cancerous.

So if I was you I would take it easy and wait the five years unless symptoms appear!

PS.
For it to be a 5 yers polyp, you can be sure it had low grade dysplasi, otherwise you would fall in another group :)


Thank you Pemba, can you provide a link with the information you provided on the percentage of Adenomas that become cancerous, and the amount of time it takes for it turn cancerous? I know everyone is different, but that information is a little reassuring.

rockhound
Posts: 83
Joined: Fri Jul 14, 2017 5:00 pm

Re: Anxiety and questions about follow up and tubular adenoma

Postby rockhound » Wed Dec 13, 2017 2:53 pm

scared0304 wrote:Thanks to all of you for your feedback..... I'm wondering if I told my PCP that I wanted a colonoscopy at 3 years instead of 5 years, if my insurance would cover it? Do any of you know the answer to that? As for the genetic testing is that something my insurance would pay for based on my history? What is the out of pocket cost for it? I'm more concerned for my children, the GI doctor recommended they start receiving colonoscopies at 35, one of them has celiac disease, does that put him at higher risk for colon cancer?

I also suffer from anxiety, have been in a tailspin for the last 6 months, health anxiety plays a big part, so finding the polyp has only increased the what if's and worst case scenarios ten fold. I am seeing a new therapist Friday and considering medication, it is good to know that Prozac has worked for you.


I was also suffering from health anxiety pre-cancer and was always afraid of getting cancer... surprise not as bad now on the other side! I was not inclined to go for the medication, but my psychologist suggested it and I'm glad I did. About a 180 deg. change over the 3-4 weeks after starting taking it and no longer see the psych. regularly. My cancer situation seems to be good also, so that has certainly helped with everything...
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-H
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 - Clear CT

scared0304
Posts: 13
Joined: Tue Dec 12, 2017 1:56 pm

Re: Anxiety and questions about follow up and tubular adenoma

Postby scared0304 » Wed Dec 13, 2017 7:29 pm

O Stoma Mia wrote:
O Stoma Mia wrote:I don't think you need to worry right now. According to the MD Anderson protocol for colonoscopy followup, I think 5 years is normal if you have only one or two small tubular adenomas.

See document below, page 3
https://www.mdanderson.org/content/dam/mdanderson/documents/for-physicians/algorithms/screening/screening-colorectal-web-algorithm.pdf.
.
.

Note: If the cause is not hereditary, then there is a possibility that the cause might be life-style related and that you could do something about it. The article below about tubular polyps gives several possible life-style causes to consider. Are they doing any tests to rule out hereditary causes?
"You also can take these steps to help avoid both colon polyps and colon cancer:

Eat less fat and more vegetables, fresh fruits, and other high-fiber foods
Keep your weight in a healthy range
Avoid smoking and too much alcohol"
Ref. https://www.webmd.com/colorectal-cancer/colorectal-tubular-adenoma

.
.


Genetic testing was not mentioned and I didn’t bring it up because I didn’t even think about it. 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? I have read about prevention and in addition to diet (I’m not overweight and only drink moderately) I’m considering starting baby aspirin. Any thoughts on that?

Pemba
Posts: 73
Joined: Thu Aug 24, 2017 7:52 am

Re: Anxiety and questions about follow up and tubular adenoma

Postby Pemba » Thu Dec 14, 2017 6:08 am

scared0304 wrote:
Pemba wrote:Polyps at 5mm and under don’t often end up cancerous and tubular is the best look for it to have. Only around 10% of all Adeomas becomes cancerous that 90% that don’t.

They most often make the checkup scale 1, 3 or 5 years depends on the report. They know approximately how fast it takes for a polyp to grow, it normally takes around 5 years and then another 5-10 for it to turn cancerous.

So if I was you I would take it easy and wait the five years unless symptoms appear!

PS.
For it to be a 5 yers polyp, you can be sure it had low grade dysplasi, otherwise you would fall in another group :)


Thank you Pemba, can you provide a link with the information you provided on the percentage of Adenomas that become cancerous, and the amount of time it takes for it turn cancerous? I know everyone is different, but that information is a little reassuring.


Unfortunately, the page I use is Danish, but I'm linking to it's a page that is used by medical practitioners in Denmark. I'm sure there are such websites in English as well I google translate just the piece that is most relevant to you :D

"Malignancy risk

Not more than 10% of all adenomas develop into cancer

High risk
1 adenoma greater than or equal to 20 mm
5 or more adenomas regardless of size
Removal of adenoma with piecemeal technique

Between risk
1 adenoma greater than or equal to 10 mm and less than 20 mm
3-4 adenomas regardless of size
tubulovillous or villous adenoma
High grade neoplasm

Low risk
Fewer than 3 adenomas, all of which are less than 10 mm
Tubular adenoma
Low grade neoplasm

Polyployment takes place through the phases of initiation, growth and malignant transformation. The development will be affected by genetic and environmental factors
Any malignant development in a newly raised polyp is often a lengthy process, but there will be big differences

Disposing factors
First degree relatives with colorectal cancer
Low intake of dietary fiber
An epidemiological study found that high intake of dietary fiber was associated with a lower risk (27%) of colorectal adenomas.

Prognosis

A very small proportion of colon polyps develop into colorectal cancer
Malignancy risk is related to the size of the adenoma

<1 cm - 1%
1-2 cm - 10%
> 2 cm - 46%

The risk of developing cancer in adenoma with size 1 cm is estimated at 8% after 10 years
Longitudinal studies have estimated that it takes an average of 5 years for a medium adenoma to be developed from normal mucosa and 10 years for a macroscopic cancer tumor

One lacks good criteria for which polyps should be removed, and so everyone is removed
Familial adenomatous polyposis
Regular follow-up and interventions reduce the frequency of colorectal cancer down to 3%
The polyposis-based proportion of all colorectal cancers has declined since over the seventies from over 40% to below 0.1%

Link https://www.sundhed.dk/sundhedsfaglig/l ... -polypper/


Wow that became long i hope it helped at bit, even though the link is on Danish ! im also gonna link to this side "Understanding Your Pathology Report: Colon Polyps (Sessile or Traditional Serrated Adenomas)"
https://www.cancer.org/treatment/unders ... nomas.html
Age: 26
2017: 15mm Tubulovillous adenoma- Low grade dysplasi.
Next scopy: original 2020 probably 2018-19

rockhound
Posts: 83
Joined: Fri Jul 14, 2017 5:00 pm

Re: Anxiety and questions about follow up and tubular adenoma

Postby rockhound » Thu Dec 14, 2017 10:31 am

Pemba wrote:
scared0304 wrote:
Pemba wrote:Polyps at 5mm and under don’t often end up cancerous and tubular is the best look for it to have. Only around 10% of all Adeomas becomes cancerous that 90% that don’t.

They most often make the checkup scale 1, 3 or 5 years depends on the report. They know approximately how fast it takes for a polyp to grow, it normally takes around 5 years and then another 5-10 for it to turn cancerous.

So if I was you I would take it easy and wait the five years unless symptoms appear!

PS.
For it to be a 5 yers polyp, you can be sure it had low grade dysplasi, otherwise you would fall in another group :)


Thank you Pemba, can you provide a link with the information you provided on the percentage of Adenomas that become cancerous, and the amount of time it takes for it turn cancerous? I know everyone is different, but that information is a little reassuring.


Unfortunately, the page I use is Danish, but I'm linking to it's a page that is used by medical practitioners in Denmark. I'm sure there are such websites in English as well I google translate just the piece that is most relevant to you :D

"Malignancy risk

Not more than 10% of all adenomas develop into cancer

High risk
1 adenoma greater than or equal to 20 mm
5 or more adenomas regardless of size
Removal of adenoma with piecemeal technique

Between risk
1 adenoma greater than or equal to 10 mm and less than 20 mm
3-4 adenomas regardless of size
tubulovillous or villous adenoma
High grade neoplasm

Low risk
Fewer than 3 adenomas, all of which are less than 10 mm
Tubular adenoma
Low grade neoplasm

Polyployment takes place through the phases of initiation, growth and malignant transformation. The development will be affected by genetic and environmental factors
Any malignant development in a newly raised polyp is often a lengthy process, but there will be big differences

Disposing factors
First degree relatives with colorectal cancer
Low intake of dietary fiber
An epidemiological study found that high intake of dietary fiber was associated with a lower risk (27%) of colorectal adenomas.

Prognosis

A very small proportion of colon polyps develop into colorectal cancer
Malignancy risk is related to the size of the adenoma

<1 cm - 1%
1-2 cm - 10%
> 2 cm - 46%

The risk of developing cancer in adenoma with size 1 cm is estimated at 8% after 10 years
Longitudinal studies have estimated that it takes an average of 5 years for a medium adenoma to be developed from normal mucosa and 10 years for a macroscopic cancer tumor

One lacks good criteria for which polyps should be removed, and so everyone is removed
Familial adenomatous polyposis
Regular follow-up and interventions reduce the frequency of colorectal cancer down to 3%
The polyposis-based proportion of all colorectal cancers has declined since over the seventies from over 40% to below 0.1%

Link https://www.sundhed.dk/sundhedsfaglig/l ... -polypper/


Wow that became long i hope it helped at bit, even though the link is on Danish ! im also gonna link to this side "Understanding Your Pathology Report: Colon Polyps (Sessile or Traditional Serrated Adenomas)"
https://www.cancer.org/treatment/unders ... nomas.html


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...
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-H
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 - Clear CT

Pemba
Posts: 73
Joined: Thu Aug 24, 2017 7:52 am

Re: Anxiety and questions about follow up and tubular adenoma

Postby Pemba » Thu Dec 14, 2017 12:42 pm

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
Age: 26
2017: 15mm Tubulovillous adenoma- Low grade dysplasi.
Next scopy: original 2020 probably 2018-19


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