what does “in situ” mean?

Yay! Another post about cancer! I know most readers probably come here for sewing content. Hopefully, I will be back to the sewing soon.

But first, I need to talk about something kind of shitty.

I had my first appointment with the oncologist on Thursday. There were no surprises. She confirmed the diagnosis & reiterated the protocol for diagnostic & therapeutic steps. First up will be a cold knife cone biopsy “to rule out invasive cancer”. I’ll be put under “because no one is insane enough to do this while they’re awake” & she will slice a cone out of my cervix & examine it for cancer, to see how deep the cancer cells have penetrated. Some people with adenocarcinoma in situ stop there if it appears that the biopsy itself removed all of the cancer. This way, they can keep their uteruses & have more children if they like.

However, cervical adenocarcinoma can be sneaky. It can grow in a “skipping” pattern, so the outer edges of the biopsy are free of cancer cells, but cancer cells were still left behind in the body. This is what makes adenocarcinoma trickier to treat than its more common relation, squamous cell carcinoma.

& of course, if the margins are not free of cancer cells, that means there’s definitely more cancer lurking in there.

So my doctor considers a simple hysterectomy (removal of cervix & uterus) to be the standard treatment, even for adenocarcinoma in situ. Right now, adenocarcinoma in situ is my diagnosis. It is considered “stage 0,” & the oncologist repeatedly stressed the fact that the “in situ” part means it is technically a pre-cancer. I get what she’s saying: if it’s in situ, that means the cancer cells haven’t penetrated to the blood vessel level & there’s no chance it has spread. Adenocarcinoma in situ is apparently the one & only precursor to invasive adenocarcinoma, & it’s pretty much a guarantee that it WILL progress to invasive adenocarcinoma if I just kick back & do nothing. But at the end of the day, my feeling is, if I walk away from treatment for this “pre-cancer” missing body parts, I’m gonna go ahead & take the liberty of calling it cancer. #sorrynotsorry

There are other, more common types of cervical “pre-cancer” that can be successfully treated with cone biopsy, LEEP, or cyrotherapy. These treatments allow women to keep their uteruses & cervixes. Unfortunately, that’s not the kind I have.

We did talk about the possibility of stopping after the cone biopsy, so I could have another kid in a year or two. That’s not something Jared & I have decided that we definitely want for sure, but we’d been kicking the idea around. She said I would have to be closely watched (like, exams every two months), & that she still recommends hysterectomy once I’m done having kids. & that it’s really only an option if the cone biopsy comes back with clear margins. She also pointed out that I’m 37. Time would be a-wastin’ on the baby-having front even if I didn’t have this whole cancer situation happening. She was basically like, “Uh, if you’re gonna do it, do it now.”

I walked out of the appointment feeling pretty okay about everything. There were no real surprises, & I felt like she knew what she was talking about & was good at explaining things to me & making sure all my questions were answered.

But once I got home, I started wondering…is there a reason my diagnosis is adenocarcinoma IN SITU? Can they tell just from the testing they’ve done so far that this definitely is very early cancer, or is that the default diagnosis because those surface cells are all they have been able to access so far? She said the cone biopsy is diagnostic to “rule out more invasive cancer,” which is a phraseology that could be interpreted as, you know, “We’re doing that just in case, just to be on the safe side, but it’s probably nothing so don’t worry.” Had they actually seen something that justified that relaxed attitude, or were they just giving me the earliest possible diagnosis in the absence of more information?

So I called & asked. & the answer is: the “in situ” diagnosis is just the default in the absence of more information. Hopefully the cone biopsy will provide all the information they need to confirm the “in situ” staging, but it’s also entirely possible that it will turn up a more advanced cancer, which would require more radical treatment, such as a more extreme hysterectomy, radiation, &/or chemo.

Logically, that all makes sense. & I understand why they didn’t spell that out for me explicitly. Even an in situ diagnosis is shitty enough without being told, “This could turn out to be a lot worse.” They don’t want to scare people. & you know, it IS scary. Adenocarcinoma is no fucking joke. The five-year survival rate for stage 3 is only 7%. (The five-year survival rate for in situ is 92%, I think, but that includes everyone who dies of anything.)

I’ve been bopping along telling people, “It was caught early, it sucks, but it’ll be fine.” As it transpires, we don’t know yet if it was caught early or not. & my early exams & symptoms are not super-promising. I’ve been positive for adenocarcinoma in biopsies taken both on the cervix & in the endocervical canal. The cervical lesions are visible to the naked eye. I have troubling symptoms that could be evidence of more invasive cancer, & even symptoms that could be related to metastases to the kidneys & liver.

I am trying not to catastrophize though. Everything could be okay. I just had to take a day yesterday to do nothing & feel sorry for myself while I divested Ramona’s trick or treat bag of its Butterfingers. I’m telling myself now that there is fuck-all I can do about any of this, & that nothing is to be gained by worrying. So I’m gonna try to just put all of this stuff out of my mind for now & go back to having a normal life while I wait for the cone biopsy (which will probably happen in early December). & that means SEWING! I actually let Ramona talk me into buying some fabric specifically to make her a set of pajamas–a departure from my general philosophy of not sewing for people who grow out of their clothes overnight. She chose a bicycle print jersey & I think I’m going to use it to make a little henley shirt & some jogger pants with contrasting cuffs.

Published by Ciara

Ciara Xyerra wrote zines for the better part of two decades. She has a brilliant & adorable preschooler named Ramona & sews as much as she possibly can. She lives in Lawrence, Kansas with her boyfriend. She enjoys catching up on "The New Yorker", meatball subs, keeping it cranky, intersectional post-third wave feminism, dinosaurs, & monsters. If you have nothing nice to say, she recommends that you come sit here by her, so you can say not-nice things together.

8 thoughts on “what does “in situ” mean?

  1. Thanks for the update. I think about you and your little family every day. December seems a long way off so your attitude to get on with life is spot on. Take care. I can’t wait to see the little pjs.

  2. Ciara, I’ve known you for a long time now, and though I’ve done little more than lurk on this blog for years, I had to comment to say that I am so sorry you are going through this and I’m here if you need me for anything.

  3. I’m just managing a quick drive by comment – I’ve been reading along but it’s too hard to comment on my phone and I just never have time when I’m on my desktop – to say that I am reading and I am interested and also you should post about whatever you like. It’s your blog after all. I appreciate hearing your thoughts and getting updates. I’ve been thinking of you a lot.

    Fingers crossed for whatever is the best scenario. I hope getting back into some sewing helps!

  4. I like your writing style, so I’ll read just about anything on your blog. The only reason I don’t want to read cancer posts is because… it means you have cancer. But it’s not like it would go away if you stopped writing about it. Write about whatever you want, I’ll still read it. 🙂

    I hope that they get clear margins! I hate not knowing things. Hopefully, you’ll have better information after the cone biopsy.

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