Cervical adenocarcinoma in situ; what can I expect?
February 13, 2013 7:30 AM   Subscribe

Pathology after a recent colposcopy found "suspected endocervical adenocarcinoma in situ" in my cervix. I am trying hard not to overthink this but am having a hard time not flipping my lid here while I wait for an appointment to follow up on this. What can can I expect? What do I need to ask the oncologist when I see her?

I have a long-running HPV infection that has led to annual "just in case" colposcopies. My Pap smears have always been normal. There were no lesions found during my most recent colp (or any other), but my gynecologist did take a few biopsies just to be sure, and I got the results on Friday in a phone call. I have not received a copy of the actual report yet.

I have been referred to the only gynecologic oncologist in town, but the person who deals with referrals on her staff is out until tomorrow and I imagine I can expect a wait even after that since it is a very busy practice. My own gynecologist is an advanced nurse practitioner who is a nice lady but kind of murky about the details. She says that I can expect (mostly likely) a cone biopsy, and some discussion about a hysterectomy (or not) depending on the results of the biopsy, and that at this point if she were me she'd be worried at about a 4.5 on a scale of 1-10. To be honest, I'm hovering at around a 9 and am having a hard time sleeping even though intellectually I know that this is probably not the end of the world.

The dumb questions I have at the moment are: can I expect to be able to work the day after a cone biopsy? Are there statistics about what percentage of in situ carcinomas are found to be invasive upon conization? I know you are not my doctor, but until I get in to see her, what else do I need to know or ask?
posted by My Top Secret Sock Puppet Account to Health & Fitness (14 answers total) 3 users marked this as a favorite
 
To answer your first question, I have had a cone biopsy, with a diagnosis of carcinoma in situ. (about 10 years ago now, so memory is a little fuzzy). Everyone told me I wouldn't be able to work the following day, and I duly took the day off, but I would have been fine to work. I went the day after that.
posted by gaspode at 7:37 AM on February 13, 2013 [1 favorite]


I am not a doctor, I am not your doctor; I have had dicey pap smears and colposcopies, but never had to go further than that. My evidence is anecdotal only, and is coming third-hand from my best friend's employee.

Said best-friend's-employee did have to have some pre-cancerous cells removed; according to my friend, it was an outpatient procedure, and she took the day off. "It wasn't the most fun day she ever had in her life," my friend said, but it wasn't bad and she was okay the next day and the procedure took care of everything.
posted by EmpressCallipygos at 7:42 AM on February 13, 2013


Aw, hon. I'm not sure I can say anything that'll make you freak out less, but really, there is NOT a lot of reason to freak out. Here's why: the worst, worst, WORST-case scenario isn't all that bad. Cervical cancer is an "indolent" cancer - it grows slooooowly by its very nature. If you've been getting Paps every year - and especially if your last one was normal - there is next to no chance that a massive blob of cancer has roared in and commandeered your innards in the past year. Could it be cancerous? Yes, absolutely. However, "carcinoma in situ" means that there are cancerous cells confined to a particular SITE ("situ") - which means non-invasive, which generally means easier to remove than the alternative.

I myself have had a decade of bad-to-awful Pap results, colposcopies, vague test results, etc. I know how scary it can be - lots of late nights wondering about 1% probabilities and one's fertility. However, when it comes to one's cervix, the worst-case scenario is often more unpleasant/uncomfortable than dangerous/potentially-fatal.
posted by julthumbscrew at 7:46 AM on February 13, 2013 [2 favorites]


When a relative had cancer I was surprised to find that Google Books allowed me enough access to various medical textbooks to be pretty informative. There was also a medical library at the hospital where I could look up and cross-reference stuff.
posted by XMLicious at 7:47 AM on February 13, 2013


Best answer: I know how awful it can be to deal with this, and I am so glad you found it in situ. Due to poor medical care while in the Peace Corps, I skipped right over that stage and went straight to invasive cancer*. When you see the gyn-onc, s/he will probably be able to look at your cervix and tell if it's absolutely so bad a cone biopsy won't handle it; and since there were no lesions visible even on colposcopy, it sounds like you are in good shape!

It's very possible you'll be physically well enough to go to work the day after your procedure. But since this kind of medical stuff is so stressful, it's nice to have a day to recuperate on that front. I'm a fan of taking whatever pleasantries come with requiring crappy medical treatments, so except for the times I can't afford to miss, I take all recommended days off.

I don't want to send your 9 to a 10, but though you will read and hear everywhere that cervical cancer grows terribly slowly, adenocarcinoma is the 15-20% that doesn't take its time. So again, you are in a great position, having caught it so so early, and I encourage you to follow up promptly to everything. And if possible, take a person with you to the cone biopsy appointment (at least during the meet-and-greet, question-and-answer time with the oncologist) and let him/her be in charge of the list of questions you have. I did this and was much less likely to omit something I felt mildly embarrassed about, plus there was someone else's memory on the job.

Take care.

*I'm 34 now, diagnosed at 31, tried most things western and complementary medicine have to offer, and am currently doing alright. MeMail me if you think there's anything I might be able to do for you.
posted by strivesc at 8:08 AM on February 13, 2013 [1 favorite]


Best answer: Oh, and shall I answer your actual questions?

:: According to the National Cancer Institute almost 100% of this type of in situ abnormality does not progress any further.

As far as questions you want to ask, most would come up around hysterectomy. But before then, here are some things that may be on interest:

:: How often do you see this stage of abnormality turn into full-blown cancer?
:: What do you recommend if fertility is no concern? If it is a concern?
:: How might a cone biopsy affect my fertility?
:: When is hysterectomy the best post-cone biopsy step? (Something along the lines of, what size of margin are you comfortable with?)
:: What is the follow-up to this procedure if the margins are good?
:: Is there anything I can do to facilitate healing? (aside: Do Not Smoke.)
:: Is my HPV strain high-risk? How does that effect treatment decisions?

Also, let the doctor know if you have any detectable symptoms (like irregular spotting).
posted by strivesc at 8:31 AM on February 13, 2013 [1 favorite]


I had the same diagnosis and had a cone biopsy. There were bad cells in the margins of the biopsy and my oncologist recommended a hysterectomy. I got a second opinion and decided not to have one. I'm 15+ years of clean paps past that experience. For the first year after the surgery I had paps every three months, slowly winnowing down to where I am now back to once a year.

The worst part about the whole experience was waiting for appointments, results, etc. You can drive yourself nuts in those spaces. As much as you can, try to combat the catastrophic thoughts with some of the information you see here.

You're going to be OK.
posted by orsonet at 8:51 AM on February 13, 2013


Best answer: I would focus on taking really good care of yourself emotionally while you wait. Uncertainty in illness takes a toll on one psychologically, and waiting is the hardest part.

Hot baths, good books, funny movies, healthy and delicious food, taking walks if the weather is decent, buying a few new things for your favorite hobby... all these things might help you while you wait.

Good luck. Memail me if you want a care package.
posted by k8lin at 9:09 AM on February 13, 2013


Hi!

I went through something similar this autumn. I had my lesion removed with a laser, under anethesia in the hospital. I was VERY freaked out until I spoke to the oncologist, who assured me that she was going to take care of it.

It wasn't fantastic, but I had my surgery on Wednesday, and was back in the office on Monday, feeling fine.

Mine was in a more sensitive location, so it was more tender, but honestly, I didn't even use the pain killers. Not one.

You'll be fine, I promise.
posted by Ruthless Bunny at 11:40 AM on February 13, 2013


Response by poster: Thanks, everyone.

The oncologist's office just called with a 90-minute appointment (pelvic exam, history, some lab work, maybe some more biopsies, consent for any surgery that we might schedule) for next Wednesday, and I feel about 10% better knowing that ball is rolling now. 90 minutes seems like a lot of time, so if there's anything else I should be thinking about please do post.
posted by My Top Secret Sock Puppet Account at 2:16 PM on February 13, 2013


Be very careful about taking all the information about 'cervical cancer' on the internet as relevant to your own case. Most (about 85%) of cervical cancer is squamous cell carcinoma (SCC) rather than adenocarcinoma - it refers to the different cell type that the cancer originally arose from. They are two completely different types of tumour and might be managed slightly differently. This is not to say that your case will be worse or better or same, but just make sure that you're getting accurate information about cervical adenocarcinoma rather than SCC.
posted by chiquitita at 10:15 PM on February 13, 2013


Response by poster: Thanks for pointing that out, chiquitita (and strivesc). The difference between the two types was tricky to sort out at first, but finding it out is one of the reasons why I'm a little more anxious than I might otherwise be. The adenocarcinoma in situ seems to be a lot less understood, and generally seems to get treated a little more aggressively.
posted by My Top Secret Sock Puppet Account at 8:19 AM on February 14, 2013


I had a cone a little over a year ago for squamous cell cervical cancer. It was originally diagnosed as in situ, but the pathology report from surgery showed that it was actually in the very early stages of being invasive. Luckily, the margins of the cone came back clear, so I didn't need any follow up other than regular dates with my gyn.

My original pap showed abnormal glanduar AND squamous cells, so they screened me for adenocarcinoma as well. At your upcoming appointment, they will likely do an endocervical biopsy as well as the surface ones you're probably used to from colpos. Apparently not everyone's body reacted the way mine did, but I found it horrendously painful, and my gyn couldn't get the curette into my cervical opening far enough (I've not had children) to complete the biopsy. Instead, they did a D&C while I was sedated for the cone.

No, you should not plan to work the next day after the cone. At the least, you'll be exhausted and achy.
posted by desuetude at 8:59 PM on February 15, 2013


Response by poster: An update for future readers of this thread: things with the oncologist went fine, and we ended up doing a LEEP cone in the office the day of my initial appointment (surprise!). The margins were clear. Woot! Beyond some cramps the first three days and icky discharge for the first three weeks, recovery from that has been fine although the 6 weeks without sex and tampons is grating a bit at this point.

The follow-up is colposcopy and endocervical curettage every 3 months for a year, and if things are good on that front we can maybe move back to frequent Pap smears/HPV testing instead. In general, the oncologist seemed a lot less freaked by this than my gynecologist, probably because the gynecologist doesn't see adenocarcinoma quite as often.
posted by My Top Secret Sock Puppet Account at 12:34 AM on March 20, 2013 [4 favorites]


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