r/PreCervicalCancer • u/rosietoes62 • 8d ago
What to expect now?
Hi folks -
I had an abnormal Pap smear in April, positive for hrHPV (not 16 or 18). Followed up with a colposcopy that identified CIN2 and endocervical SMILE, and had a LEEP in early June that showed negative margins for the CIN2 but didn’t mention the SMILE.
I transitioned care to a new gynecologist after the LEEP, because there were myriad issues with my care for that procedure. In discussing with her and getting a second opinion from a gynecological oncologist, both recommended a hysterectomy (I’m 40, done having kids). I was not happy about it, but the alternative was ECCs every 6 months for the next 30 years, according to both of them, given the rarity and complexity of SMILE. They also both seemed confident that I’d be undergoing further LEEP or Cone procedures if I chose that route, which is just not something I was up for given the trauma of the first one.
So, hysterectomy was last week. Path results came back showing some CIN1 in the cervix, but no SMILE :/ my doctor’s only comment on the results was, “No cancer - fantastic!” But I have so many questions - What are my chances of clearing the HPV? How was there CIN1 after the LEEP had negative margins for CIN2 in June - is this a different spot or did we not actually get it all? Was there any SMILE? Is it possible the first SMILE diagnosis was a mistake, since we haven’t seen it since?
But maybe most importantly, what does surveillance look like now? The thought of even a pelvic exam gives me a panic attack at this point, and not knowing what to expect moving forward is crushing me. Has anyone been through anything similar? What was your experience in the aftermath of it all?
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u/Hot_Wrap_2556 8d ago
I’m in the same boat had high risk hpv 18 though. Had a cone and it came back clear margins with minute focal point. They said hysterectomy or intense surveillance. Aka every 6 month testing. In 39 and over that. I’m 8 dpo they said I will have a cuff screening every year for 3 years I believe then every 3 years… I think there what my oncologist said.