Polyps at (relatively) young age...wonderibg how to advocate

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Kat520
Posts: 5
Joined: Sat Aug 26, 2017 12:32 pm

Polyps at (relatively) young age...wonderibg how to advocate

Postby Kat520 » Sat Sep 09, 2017 1:11 pm

So here's my background:
-Bleeding at 25, colonoscopy with one 6-7mm polyp found at 25 and told to return in ten yrs. No info on type of polyp and doc didn't give any indication that it was a concern.
-Colonoscopy at 35. 3 polyps found. One ascending tubular adenoma at 7mm, one ileocecal tubular adenoma, one rectal tubularvillous adenoma
-Repeat colonoscopy 2 months later to make sure doc got it all. Found sigmoid polyp. Told to return in 3 yrs.
-Colonoscopy at 39, was pregnant at the three yr mark so closer to 4 yrs. One 0.3 cm polyp in hepatic fluxure. Want repeat in 5 yrs.

So the first colonoscopy was done by one doc, next 3 done by my most recent doc who just moved to Denver. She recommended genetic screening bc of the polyps found at my age, which i will do after completing my life insurance stuff.

So I will get getting a new doc...not sure who and am unsure how to find out who is thorough and will continue to work on preventing me from ending up with cancer.

I'm anxious...im scared for the genetic link bc I certainly dont want the kids to have it. I'm both grateful that I've been lucking out and have had these colonoscopies, but afraid 5 yrs maybe too long. My doc that did the last 3 said I wouldn't have made it to 50...the usual screening age. I kinda figured it would be 3 yrs if they found stuff and 5 if they had an all clear. But then, am I just worrying too much and requesting unnecessary (and unpleasant) tests? Obviously if the genetic link turns up my screening will change depending on that.

Thoughts? On finding reviews or info on doctors? On whether 5 yrs is appropriate or should be 3? On what age my kids should be screened...ive read ten yrs prior...so would it be 15 or 25...i have no idea what kind the first polyp was....

I found help in my 20's on healthcare with cervical dysplasia, so I'm hoping this will be a source of info as well as a place to quell some anxiety. Really wish my doc hadn't moved....
Ty in advance for your time...

Lee
Posts: 5534
Joined: Sun Apr 16, 2006 4:09 pm

Re: Polyps at (relatively) young age...wonderibg how to advocate

Postby Lee » Sun Sep 10, 2017 3:40 pm

Hi and welcome.

Regarding screening, think of it as "knowledge is power". If it is determined you have genetic issues, you really want to know so that you can be monitor you more closely than other people. Since you seem to have a history for producing polyps, you might not want to go beyond 3 year. NEVER go beyond 5 years.

Can you get copies of your pathology reports? If you can, get them and keep them in a special place (like a 3 ring binder with other medical information). Can you ask family if colon cancer ruin in your family. If you have siblings, they too should be scoped.

At what age your kids should be screen may be determined by your genetic finding.

Do you know what type of genetic testing they will be doing on you? Many people here have also been genetic tested.

Find a primary doctor you feel comfortable with. And take it from there.

Hope this help some, We are here to help.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

Kat520
Posts: 5
Joined: Sat Aug 26, 2017 12:32 pm

Re: Polyps at (relatively) young age...wonderibg how to advocate

Postby Kat520 » Sun Sep 10, 2017 10:13 pm

Hi Lee,

I do not have any family history of colon cancer...a grandmother with breast cancer, but that was in her 90's...an uncle with uterine cancer, but again, older in his 70's. Suggested to my brother 4 yrs ago to get a colonoscopy at the direction of my doc and again this yr, and he was less than agreeable and did not do it. I also don't have very many lifestyle contributing factors...haven't drank since early twenties, quit smoking 3 yrs ago, not overweight, vegetarian for 15 yrs,...

You are right, I do need to get organized....i can get path reports on the last three. I do not have a path report on the first polyp, just a letter saying it was benign.

The genetic testing is Myriad Myrisk Hereditary Cancer Test. That is all I really know...the website seems to indicate that it covers all the major genetic mutations...

I vaselate between Google being a way of being knowledgeable enough to advocate for myself and a way to extremely stress myself out...

Thanks again for your reply. :)

veckon
Posts: 128
Joined: Thu Jul 27, 2017 7:44 am

Re: Polyps at (relatively) young age...wonderibg how to advocate

Postby veckon » Mon Sep 11, 2017 9:21 am

My first genetic testing was through myriad, which found the two clinically important mutations I had. MSK also did this but the results were identical.
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

Kat520
Posts: 5
Joined: Sat Aug 26, 2017 12:32 pm

Re: Polyps at (relatively) young age...wonderibg how to advocate

Postby Kat520 » Mon Jan 29, 2018 1:49 pm

So my doc moved to Denver and new doc doesn't want to do the genetic testing and says insurance won't cover. Opted to do the Color test on my own and am awaiting the results. Figure I'll go from there. I'll keep you posted and appreciate your support.

TXLiz
Posts: 249
Joined: Thu Sep 22, 2016 3:31 pm

Re: Polyps at (relatively) young age...wonderibg how to advocate

Postby TXLiz » Mon Jan 29, 2018 11:08 pm

Kat520 wrote:So my doc moved to Denver and new doc doesn't want to do the genetic testing and says insurance won't cover. Opted to do the Color test on my own and am awaiting the results. Figure I'll go from there. I'll keep you posted and appreciate your support.


Gosh that sucks.

I always ask doctors if they would take the same advice they are giving me...your new doc would be concerned if he/she were a polyp factory.

Good luck.
Vomiting and blockage 9/19/16 46 y F
R hemi colectomy 9/20/16
Stage 3 B CRC, located in cecum
3 out of 16 lymph nodes positive
perineural invasion/lymphovascular invasion
infiltrating, mod differentiated adenocarcinoma with a mucinous component
separate tumor nodules present in pericolonic adipose tissue
MSI-high
Baseline PET scan clear 9/16 CEA 0.5
FOLFOX 10/16- 3/17
April 16th, CT scan clear. CEA 1.1
Lynch "inconclusive"
Colonoscopy 10/5/2017 clear

rockhound
Posts: 106
Joined: Fri Jul 14, 2017 5:00 pm

Re: Polyps at (relatively) young age...wonderibg how to advocate

Postby rockhound » Tue Jan 30, 2018 9:16 am

I did the MyRisk test - diagnosed me with Lynch syndrome and tumor pathology confirmed the mutation. With Lynch, the standard of care is annual colonoscopies- if I would have done this early on, I likely would have never gotten rectal cancer since the polyp would have been caught. For example, I just had my first (annual) colonoscopy post-treatment about two weeks ago and a 5mm precancerous polyp was cut out.. mission accomplished! Lynch diagnosis is important because it can be linked to many other cancers.

I have kids and the testing question for them is tough. I talked to one genetic counselor and they suggested letting the kids decide, after they turn 18 (really should be an individual's decision was their point, which I get, but as a parent, I'm still digesting that logic). Either way, they will likely need colonoscopies starting at 25 or so, esp. if they test positive.

My advice re: the Dr. is to find a different one if you don't like what they are doing, etc. and/or they don't advocate for you. You clearly have a history of polyp production...
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

scared0304
Posts: 14
Joined: Tue Dec 12, 2017 1:56 pm

Re: Polyps at (relatively) young age...wonderibg how to advocate

Postby scared0304 » Thu Feb 01, 2018 3:54 pm

Kat520 wrote:So my doc moved to Denver and new doc doesn't want to do the genetic testing and says insurance won't cover. Opted to do the Color test on my own and am awaiting the results. Figure I'll go from there. I'll keep you posted and appreciate your support.



Kat520 - I have thought about doing the Color test as well. Is Lynch Syndrome testing included in the standard hereditary cancer test or did you have to get the expanded lynch testing? Also, I am in Colorado and looking for a good GI, would you recommend your doctor that moved to Denver? If so, what is her name? Please let us know your results.

henry123
Posts: 96
Joined: Sun Oct 08, 2017 3:25 am

Re: Polyps at (relatively) young age...wonderibg how to advocate

Postby henry123 » Tue Feb 06, 2018 5:27 am

rockhound wrote:I did the MyRisk test - diagnosed me with Lynch syndrome and tumor pathology confirmed the mutation. With Lynch, the standard of care is annual colonoscopies- if I would have done this early on, I likely would have never gotten rectal cancer since the polyp would have been caught. For example, I just had my first (annual) colonoscopy post-treatment about two weeks ago and a 5mm precancerous polyp was cut out.. mission accomplished! Lynch diagnosis is important because it can be linked to many other cancers.

I have kids and the testing question for them is tough. I talked to one genetic counselor and they suggested letting the kids decide, after they turn 18 (really should be ...


Very nicely explained. While the issue of testing kids is a painful one , I find hope in the fact that Lynch is responding quite well to immunotherapies. Another 10 15 years down the line should hopefully give a easier solution than annual colonoscopies and scans for our kids.
46yo M
5/16 lap AR 14/21 L nodes +ve
T4N2M1
7/16 Capox 9 cyc
9/16 cea 2
1/17 550
PET CT mets in lung & peri
iri+ avast fail
3/17 10577
msi-h Lynch
4/17 regro fail
5/17 cea 28800
5/17 CT inc in size of mes nodes , new onset of multi nodules in liver.
6/17 Opdivo start
7/17 26754
8/17 5623
9/17 497
10/17 52
11/17 12
CT all clear exc a nodule in Lung. liver normal
1/18 3.6
2/18 2.3
4/18 2.0
opdivo continue
Aspirin start

Vegan yoga juicing apricot

Kat520
Posts: 5
Joined: Sat Aug 26, 2017 12:32 pm

Re: Polyps at (relatively) young age...wonderibg how to advocate

Postby Kat520 » Sun Feb 18, 2018 10:58 pm

@ scared0304 Her name is Dr. Kathryn Wisser. I felt she listened and certainly erred on the cautious side of things with my age and the polyps she found, which I appreciated.

As for the Color test, my results came back negative for any mutations (yay!) and took about 4 wks from sending my sample out. I compared the genes it tested and seems like the same ones as the myriad would do, so I'd say well worth the money.

Grateful that the genetic component isn't a factor, but something is causing the polyps so now, next steps for me are going to be a colonoscopy in 3 yrs...and maybe looking more closely at environmental and dietary toxins...increasing fiber...looking at the things that are in my control. Looking at what I am putting in that harms and what I put is that heals.

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O Stoma Mia
Posts: 1275
Joined: Sat Jun 22, 2013 6:29 am

Re: Polyps at (relatively) young age...wonderibg how to advocate

Postby O Stoma Mia » Mon Feb 19, 2018 12:14 am

Kat520 wrote:... but something is causing the polyps so now, next steps for me are going to be a colonoscopy in 3 yrs...and maybe looking more closely at environmental and dietary toxins...increasing fiber...looking at the things that are in my control. Looking at what I am putting in that harms and what I put is that heals.

What's the link between alcohol and colon cancer?
https://health.usnews.com/health-care/patient-advice/articles/2017-08-08/whats-the-link-between-alcohol-and-colon-cancer

...Plus, alcohol can also lead to the development of polyps in the colon, ..., and it increases the risk that you'll develop polyps, which are benign growths that have the potential to turn into colorectal cancer.......

Kat520
Posts: 5
Joined: Sat Aug 26, 2017 12:32 pm

Re: Polyps at (relatively) young age...wonderibg how to advocate

Postby Kat520 » Mon Feb 19, 2018 10:03 am

I haven't drank in over a decade and quit smoking quite a while ago as well...so the obvious two are are out...but yes, those are the things I am now looking for. So if you have info on things like that i appreciate the share!. And taking a more holistic approach to prevention in addition to the colonoscopy...


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