Hey all, 26F. Looking for perspectives because my case is confusing even my doctors a bit.
*Backstory:* Aug 2024 I had bright red blood in stool. Diagnosed with amebiasis, treated with antibiotics. Infection cleared on follow-up stool tests, but bleeding continued. That’s what led to my first colonoscopy.
*Colonoscopy #1 – Sept 2024*
- *Indication:* Diagnostic for hematochezia
- *Findings:* Boston Bowel Prep 9. Terminal ileum + ascending colon normal. _Multiple elevated, sessile and pedunculated polyps starting at rectum up to 50cm from anal verge._ Polypectomy done.
- *Diagnosis on report:* _Familial adenomatous polyposis_
- *Biopsy:* _Adenomatous tubular polyp with low-grade dysplasia_
-Due to the huge amount of polyps found, GI said >100, he only snared 5 polyps for biopsy.
*Colonoscopy #2 – Dec 2025* [15 months later]
- *Indication:* Polypectomy
- *Findings:* _Multiple sessile and pedunculated polyps in the transverse colon down to the rectum._ Polypectomy done again.
- *Diagnosis on report:* _Colonic polyposis_
- *Plan:* Send to histopath + _surgery referral for possible proctocolectomy_
- *Biopsy:* _Tubular adenoma with low-grade dysplasia_ again
-Same with the 1st colonoscopy, GI snared 5 polyps.
*Genetic testing:* Did Invitae Multi-Cancer Panel (70 genes incl. APC, MUTYH). *Result: NEGATIVE.* No pathogenic variants found.
*My questions for anyone with FAP, AFAP, or polyposis:*
Has anyone been diagnosed with FAP clinically like this but had negative genetic testing? Did you get a diagnosis of “APC-negative FAP” or “polyposis of unknown etiology”?
For those with dozens/hundreds of polyps, how fast did yours grow back between scopes? 15 months feels fast to me.
If you were offered proctocolectomy with negative genetics + low-grade dysplasia only, did you do it? What made you decide yes/no?
Any younger people here managing polyposis with just yearly scopes vs. surgery?
I know FAP = high cancer risk eventually, but the negative genetic test + still being young is making this decision feel huge. My family has no history of colon cancer or polyps that I know of.
Not asking for medical advice — I have a GI and surgical consults lined up. Just want to hear from people who’ve actually lived this.
Thanks in advance.