Feeling a bit stressed coming back to this forum 5 years on!
I had a smear show severe changes 5 years ago, so went to colposcopy, had a loop there and then, the biopsy revealed unclear margins and 1a1, Hpv positive. Had another loop and then onto regular check ups - with a nightmare pregnancy in the meantime!
Fast forward to recent smear at colposcopy and nurse saw acetowhite patches. Told me not to worry but she wanted to do a punch biopsy. I’ve heard this nurse say don’t worry before!!! I won’t lie. I’m worried.
Have called up yesterday for results as she said they’d be two weeks plus bank hold (yesterday was 2 weeks and I was impatient!) - they said a letter had already been sent but told me that the biopsy was inadequate and they were awaiting the smear test results that would hopefully be back next week before discussing next steps.
I don’t even know what to think!! I’m already awaiting a hysterectomy (9-12months wait) for other gynae probs and mentioned to nurse who took biopsies and she said if anything showed up it could be considered seriously on action plan if it is already on the cards anyway.
Why would a smear be different to a biopsy? Why would a biopsy be inadequate.
And why can’t I find ANY similar stories on anyway with micro invasive 1a1 with abnormal changes coming back 5 years on! I know recurrence is v low % but must be someone out there who can relate?
Can’t sleep and have insomnia. Sick with worry as a mum of 4!
I’m so sorry you’re dealing with the ongoing worry of this again.
I’m also no evidence of disease from 1a1 adenocarcinoma back in Dec 2018 (with conservative treatment via cone). I have been doing the twice a year ECC and pap smear testing. They also have me on yearly HPV testing, which remains negative.
I saw your post and just wanted to say that I have also had the “inadequate specimen” report over the years. It’s happened twice, and was told they didn’t get enough tissue sample when they took the biopsy (usually the ECC in my case). From my understanding, the pap smear may scrape an area at random… whereas a biopsy is usually a targeted section. In theory they can be different, but I think the colposcopy limits that likelihood as your doctor probably took the cells for the pap smear near/on the area they also biopsied. The biopsy is usually more accurate and the only thing they can use to diagnose formal cell changes. In my case, when the smears came back negative and the biopsy was inadequate, they didn’t have me redo them as my HPV test was negative.
As for the acetowhite patches, my understanding is that ANY inflammation can also set that off… so although we would naturally be automatically worried that those are precancerous or cancerous changes… it could also be something like an infection and perhaps they just want to be extra cautious to make sure they’re not missing anything. It’s also possible that HPV is active (not sure if you’re getting tested for that) and there are minor cell changes.
You’re right, reoccurrence for the actual cancer is approx. 2% for us with conservative treatment and even if there is, the whole reason for our check-ups is to catch it as early as possible (when it’s minor cell changes). I know it’s easier said than done to not worry (I still worry at every check-up!). But there’s nothing you can do until they get the smear results to you.
Try to distract yourself as much as possible. Sending you & your family positive thoughts!!
