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

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Kat520
Posts: 2
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: 5076
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: 2
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: 84
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


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