9:05 pm - 07/18/2013

Cold Knife Cone Biopsy for Adenocarcinoma in Situ... my experience

Hi all,

I've written before about my abnormal pap smears, AGUS (Atypical Gladular Cells of Undetermined Significance), colposcopies, etc. (July 2011 | May 22, 2013 | May 30, 2013 | June 27, 2013)

I was diagnosed with adenocarcinoma in situ (basically cancer cells in the glands in my cervix). Originally I was going to have a LEEP (laser removal), but through a series of ridiculous circumstances, a new surgeon and adjusted treatment plan, I ended up going with a cold knife cone.


I had a hard time finding people talking about adenocarcinoma in situ and cold knife cones in this community so I just wanted to share my experience in case anyone else goes through this and wants to know what the surgery is like. Obviously everyone's experience will be different, but hopefully this can help someone!


Cut into different sections for ease of navigating

Yesterday

A pre-op nurse called me around 9AM to discuss ask me a whole host of medical questions. What medications I've been taking, if I've experienced any depression, diabetes, etc. I also had to give my height and weight on the phone (...so I sort of wish I had stepped out to somewhere a *little* more private). They did ask me if I had a living will (I do not, but it's something you can probably prepare if that gives you peace of mind. This procedure is very safe, so don't be nervous!) She told/reminded me:


  • Do not eat after midnight

  • Good to brush teeth, not good to use mouthwash or chew gum

  • Wash with anti-bacterial soap (dial recommended)

  • Nothing on skin after shower (oddly enough light foundation was ok? But no lipstick, mascara)

At 3PM another nurse called to tell me the time of my surgery. My time was scheduled for 7:30AM and I had to arrive by 5:30. The nurse informed me the surgery was scheduled for 45 minutes, I should anticipate being into recovery 1 by 8:30. And then I'd move to recovery 2 after an hour where my friend could meet me. Most people stay in recovery 2 for an hour or two, and can leave when they can keep down a drink and empty their bladder. They gave me directions to surgical services dept and information on parking validation as well.

I wrote a list of instructions for my friends who were incharge of picking me up (I arranged shifts, so that no one had to take more than 2 hours away from work). Here's what I included:

  • Hospital address

  • Contacts of everyone who was taking a shift

  • Emergency contacts for my family (they live far away, I chose to not tell them about the surgery unless the results came out badly)

  • Directions to surgical suite, parking instructions, etc.

  • Location of a spare key to get into my house

  • I preloaded a sippy cup that I put in the fridge and included detailed instructions to put it on a coaster next to my bed. Haha!

  • I put some cash in an envelope and put it on my fridge in case there were any expenses I didn't think of

Today

Woke up at 4:30, scrubbed myself down with dial and got my prepackaged clothes on  (t-shirt, zip up sweatshirt, yoga pants, sports bra, grannie panties :) They asked me to bring clean socks). License and ID were put in a ziplock bag. I gave my phone to my friend who was driving me there and was most likely picking me up.

My friend dropped me off a little before 5:30. I told her she didn't have to go in. In retrospect, I wish she did because I didn't have her cellphone number on me (I know, I should have printed out an emergency instruction sheet for myself!) and there was text service guests could sign up for to get status updates.

When I got to the hospital, I had to fill out a questionnaire answering the same list of questions I was asked by the pre-op nurse yesterday. I waited in a waiting room for about 20 minutes. I was pretty nervous and had trouble focusing on my magazine. Eventually I got called in. I had to give a urine sample (to confirm I wasn't pregnant), and then I changed into my hospital gown. I had to take off everything, including the headband and bobby pins I was wearing. The clean socks were the only thing I kept on.

Another pre-op nurse came in and once again went through that list of medical questions with me. She took all my vitals, put this little massing wrap on my calves to keep blood moving, and I laid in the hospital bed watching TV until my anesthesiology team (3 residents and 1 attending) came in. I was one again asked that series of medical questions, and also questions about when I late ate. They asked in several different ways (so what did you have for breakfast?). After talking about it with the anesthesiologists and my doctors (my regular gynecologist joined someone who specializes in surgery in her practice. I originally was scheduled to have this surgery with a gynecological oncologist...but that was part of the drama I experienced which I linked to above), we decided on general anesthesia (I wanted to be as still as possible, since a cold knife cone is more invasive and more prone to error than a leep). I was warned they would have to put a breathing tube in and my throat would be a little sore when I woke up.

They put in the IV through my hand. I think saline was going into it, but I honestly wasn't looking at the bag. My doctors answered my questions about follow up, when I could exercise/swim again, what I should use for any pain/sore throat, etc.

About 10 minutes (7:18 to be exact!) before my scheduled surgery time, the anesthesiologists gave me an injection that they said would loosen me up as if I'd taken 1-2 shots of alcohol. I felt this immediately as they began rolling me to the operating room. I think I attempted some Grey's Anatomy joke before they put the mask on me. I don't remember having that much warning before they put the mask on. I just remember coughing a lot and them telling me I had to breathe. It felt like 10-15 seconds before I was out.

Next thing I knew, I heard my name being called and I was being told to wake up. I think I woke up in the operating room and was pretty groggy as I was rolled into recovery 1 (at 8:26). They told me to just relax, and I toyed with the idea of napping before realizing I wasn't all that sleepy and my grogginess was going away. I would say I was fully coherent within 10, maybe 15 minutes. I was a little uncomfortable, more so when I was sitting up, but it sort of felt like after sex that was a little too rough or dry. Or a similar feeling to a mild UTI (though obviously a different location). Honestly, my sore throat was on par with what I was feeling.

It was very clear that the others there (I believe most were outpatient gynecological services) weren't having as much luck with their anesthesia wearing off. The woman across from me fell asleep WALKING to recovery 2. Lots of incoherent mumbling and groans.

After about 5 minutes they put a pad and disposable underwear on me (closed the curtain first!).

After 45 minutes in recovery 1, they walked me to recovery 2 and gave me a soda and crackers. They said I could leave as soon as I could drink without throwing up and could empty my bladder. I ate and drank immediately with no issues. They called my friend in, explained follow up (nothing in the vagina for four weeks, wear a pad, a little bleeding totally normal, rest as much as possible for 48 hours, no lifting over 10 pounds for a few days <-- (score! I have a new roommate moving in tomorrow! Haha!), can't exercise beyond walking for 2-3 weeks). I was in recovery 2 for about 30 minutes before they wheeled me out to the car and I was on my way.

I've been in bed most of the day (until the roommate moves in tomorrow, I only have bedroom furniture. That's more of the reason). Honestly I have almost no pain. My vagina feels a little raw, but I have zero cramping. My throat is still the most painful part. I just took about a half a mile walk to the pharmacy with my roommate in the heat and was just fine. I was prescribed motrin, percocet and a stool softener. The only thing I've taken is the stool softner, as I do feel bloated which is slightly uncomfortable. I did not opt to get the percocet, as it seems a little overkill when I'm experiencing almost no pain. When I got home I had to pee about 8 times in 2 hours. I think it's all the saline coming out!

I wanted to share my experience because it's definitely a rough diagnosis to get. Honestly most of what I found was pretty scary and my experience was really positive. I don't know that everyone will be as lucky or pain-free as me. But I don't want others going into this thinking it's a guarantee it will be horrible. Of course I was nervous, but I went in with a pretty positive attitude which I think has really helped.

I think that's about all! I'm happy to answer any questions for anyone. You can email me at any time if you see this years down the road: ma2760 at gmail.

un_fantasma 19th-Jul-2013 01:47 am (UTC)
Thanks for sharing your experience! Good luck with the rest of your recovery. I'm glad you're not in a lot of pain.

*Edit for typo.

Edited at 2013-07-19 01:47 am (UTC)
the_bone_doctor 19th-Jul-2013 04:52 am (UTC)
Wow! What an amazingly detailed description. Thank you so much for sharing your experience, and I'm so glad for you that it seemed to have gone so well. And that is really cool that they had a text update system- too bad you couldn't take advantage of that!
ma2760 19th-Jul-2013 01:25 pm (UTC)
Maybe a little TMI, but I was reading sooo much online and wanted to know everything. So hopefully this helps someone know everything!
I did take Mortin and a stool softner last night and had a lot of trouble sleeping (I normally sleep like a ROCK). Don't know if it was the meds, anesthesia, excitement over my new roommate moving in.

I feel amazing though. My throat is totally fine, my cervix feels fine, my vagina feels fine. It seriously seems like nothing happened.
the_bone_doctor 19th-Jul-2013 03:28 pm (UTC)
That's terrific that you are feeling so good! And not TMI at all; someday this will help somebody immensely who's about to go through this procedure. I personally really appreciate reading detailed testimonies before I have to undergo something challenging.
poppleshatesyou Mod note: Safe Space Reminder19th-Jul-2013 08:55 pm (UTC)
Hi ma2760,

Thanks for writing up such a detailed post about your experience! I'm going to tag it and I'm sure it will be really helpful to many members in the future!

That said, I'm writing as a VP maintainer to remind you that VP is a safe space and with that in mind, would you mind editing your post so that it does not include the word "crazy" to describe something that is "extreme" or "ridiculous?" Using "crazy" in this way can be hurtful and stigmatizing to members of our community who have mental illness.

Could you also please edit your post so that it does not use the word "lame" to describe the maybe, not so funny joke? We understand why you might choose such a word, but doing so implies negative things about having physical disabilities, which could be hurtful or alientaing to those in this community who have physical disablities.

This is a friendly reminder to please review VP's policies to help us make VP a nicer place for everyone. You can follow these links for more information:

--What are VP's rules?
--What is "safe space"? What does "empowerment" mean? What does "accountability" look like?
--What is VP's language policy?
--Feminist With Disabilities: Ableist Word Profile


Please don't think we're scolding you or don't want you here. We issue safe space reminders to help our members acknowledge and include everyone, and to help keep VP a safe space for all. We hope you'll continue to participate in VP with this in mind. Safe space means a lot to many of our members, and it's amazing how much we can help just by being a little more careful with what we say.

If you'd like to talk more, your thoughts are welcome in contact_vp or via email (vpteam@vaginapagina.com). However, we just ask that you not discuss your reminder in this VP thread, since it would draw attention away from the original post.

Thanks for understanding.

--Popples
for the VP Team
contact_vp
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