Hello I am new here. I had Adenocarcinoma in situ in 2011 and it was removed with a LEEP but the margins were NOT clear. My paps since then have been normal, but now I’m being tested to see if its still there/recurring. I am awaiting biopsy results including ECC, and am having a CT scan next week too.
Does anyone else have experience with Adenocarcinoma In Situ treated with only LEEP/cone biopsy, and had recurrence? I am le scared.
Hi Nutmeg,
Sorry to hear this, though I imagine it's not a rarity. I don't have the same experience myself, as my adenocarcinoma was a 2b when first diagnosed. Am I correct to understand that In Situ means just the tiniest amount of cancer cells? If is has returned then I would imagine that your treatment would follow the normal pattern for a diagnosis, so a hystectomy if it's less than a stage 2 or chemo-radiation for stages 2 and above. Maybe they might do the chemo-rads anyway if it's a recurrence. I have to say, the chemo-rads do seem to do their job incredibly well and aren't nearly as difficult to get through as you might imagine. I know that waiting for results is the hardest part but you are in good hands and you will get through this.
Be lucky :-)
Tivoli
Tivoli, hello, thank you for your reply. From what I understand, "in situ" means the cancer cells are still encapsulated and have not yet begun to spread. I am reading that adenocarcinoma is harder to detect on screening tests, and is also considered more aggressive than squamous cell carcinoma in regards to cervical cancer. I am trying to learn as much as possible about all this. I have also read that having a LEEP to treat adenocarcinoma is considered the "conservative" treatment, as opposed to a hysterectomy. I was only 25 at the time of treatment so I understand the gyno chose that option to conserve my fertility. I also understand that since I had a conservative treatment and my margins were not clear, there is a chance the cancer is sitting higher up, and could recurr 4-5 years after the LEEP, and if it does return, it will be aggressive and require aggressive treatment. If I need chemo-rads, good to hear they are not as bad as they seem, will I lose my hair? Thank you again.
-- Nutmeg
Hi Nutmag :-)
Nice avatar! :-) Since you are only 29(?) now, I guess you could be treated with a trachelectomy if that's available where you are. That's the surgical removal of the entire cervix but leaves the womb and ovaries in tact so you can go on to have a family of your own. They do need to put a stitch in to hold a baby in place and they need to watch you like a hawk if you do become pregnant, but that sounds like a good option for you if you are concerned about a recurrence.
I would agree, a LEEP does sound quite conservative for adenocarcinoma. I know it hides itself higher up the channel, is harder to detect and harder to remove but I wasn't aware that it was necesarily more aggressive than squamous cell.
You will be relieved to hear that most of us who are treated with chemo are given Cisplatin, which does not do anything dramatic with your hair.
Be lucky :-)
Tivoli
Thanks Tivoli! Yes I am now 30. It is comforting to know there are so many treatment options. When I asked my gyno what would happen if I tested positive for cancer, if I would need another LEEP, she said "Well it will be another SURGERY, but lets not jump to any conclusions yet, until we have results back" So I have no idea what will be next. I have not left my house in 7 days now since finding out, except once for a doctor appointment. What a relief to know that there is a type of chemo that doesn't cause hair loss!!
Thank you for your replies. <3
Big hugs hope you get some good news soon xx
Sarah thank you very much. It's been 1 week now since biopsy. I was told about 3 weeks to hear back.
Ah hun the waiting is horrible, I had to wait 3 weeks for my recent vault smear and was not in a good place mentally. Try to do things that get you out of house, away from too much thinking time and Google. Xxx
Thank you Sarah, yes I'm trying to keep myself distracted. This waiting period is driving me bonkers- I feel like I already know the answer. :(.
Hi Nutmeg:
Don't know whether you have posted elsewhere or whether you check this thread but I thought I'd reach out to you.
I was diagnosed 1a1 adenocarcinoma on 21 April 2016. It was removed with a cone biopsy but I had CIN 2 in situ. Clear margins though. My doc recommended a hysterectomy as I have my kids and am post menopausal. She did mention in passing that something else might be kicking off higher up the cervix despite the clear margins. Apparently this can sometimes happen with adenocarcinomas. I had the hysterectomy and the biopsies did reveal another tumour higher up. This was a shocker to be honest. However, it was still small and still classified as 1a1 so she's put me on 6 monthly follow ups.
I've got a PET scan next week for a different issue so I'm hoping that nothing shows up related to the CC. My doc did say that if I hadn't got the scan booked she wouldn't have ordered one and seems OK with seeing me in 6 months. She doesn't seem worried, unlike me of course.
I hope you got good news from your scans and tests and that you're doing well.
