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Old 06-27-2012, 05:44 PM   #1
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honsda28 HB User
Cone Biopsy Experiences

Hello all. I'm so glad to have found this board to share my experience with others.

I had a cone biopsy yesterday and read a lot of information/message boards in regards to the procedure and I was so scared. I become extremely anxious about a simple pap smear, so I was crazy upset about this whole process. I just wanted to post that I have had a pretty simple process so far. I was a little dizzy yesterday and have been more tired than normal, but besides that, I feel pretty much like myself and I am so glad! I am so glad I was knocked out for this procedure...the last thing I remember was my boyfriend leaving and me crying a little bit, then I started to feel woozy and unfocused. The next thing I remember was waking up really foggy and a nurse asking me if I would like some pain medication and something to drink. Very simple day overall and I am glad it is over! I just wanted to let other ladies out there know it isn't SO scary!

I am just hoping now that I do not have recurrence and I can have babies in the future. I am only 26 years old and my boyfriend and I have discussed having children within the next few years. I am hoping I can have a healthy pregnancy in the future, that is my biggest fear with this whole process.

It is all very scary...my mother passed away from ovarian cancer when I was 19 (she was 53). The doctor says she is going to watch me closely due to my family history and now my own problems. I can't believe I'm only 26 and going through this...but I hope that my results come back okay for awhile and I can have a healthy pregnancy! Thanks for reading!

 
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Old 06-28-2012, 08:18 PM   #2
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Re: Cone Biopsy Experiences

I know how you feel, it is very scary. I have to have a cone biopsy as well and I'm terrified. I'm also 26 and would like to have children some day. I'm so scared it's cervical cancer... I hope everything works out well for both of us!

 
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Old 07-03-2012, 04:30 PM   #3
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OH73 HB UserOH73 HB User
Re: Cone Biopsy Experiences

Hi ladies - add me to the club. Just had my cone biopsy yesterday afternoon. Am 39, always regular normal paps until April this year - AGC, ASC-US and high risk HPV. Colposcopy and ECC both came back adenocarcinoma in-situ, hence cone biopsy to determine the extent of the next surgery. Next up, hysterectomy - either total or radical depending on the cone results. Bleh.

The cone biopsy wasn't too bad at all. The worst part for me was not being able to drink or eat anything for 14 hours prior to surgery. I was getting a tad cranky. After the surgery, I was moderately crampy, but nothing too terrible. Just really tired and a little sore. Came home, relaxed a bit and took a vicodin before bed.

Everything I've read on here and other websites says to take it easy after surgery and the next day. So I figured I work behind a desk, that's easy right? So I went to work this morning. Wrong decision. If at all possible, try to get the day after off as well. Getting ready for work, driving to work and then walking to my office was a little much at this point. And I am not a wuss when it comes to pain. I wasn't sore, just exhausted. Started to get the thousand-yard stare. I'm guessing my body just wasn't quite recovered from the anesthesia yet. Luckily my boss kicked my butt out after an hour or two, so I came home and went straight to bed to nap and relax. I'm already feeling better. So long story short - get your rest afterwards! If you overdo it, your body will let you know.

 
Old 07-10-2012, 09:25 PM   #4
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Re: Cone Biopsy Experiences

I am glad to read some stories of others experiencing similar health problems. So scary : ( I am 34 and have a history of abnormal paps, but most recent came back AGCUS (favor neoplasia). I then had a gyn/onc perform biopsies of cervix, uterus and ecc. ALL results negative / benign. The GYN/ONC (who is in a hospital based practice) actually sent for the lab's slide / specimen of the pap to ensure it was read correctly - she thought with all the negative results it was likely misread and their pathologist specialized in gyn/onc pathology. Unfortunately, the lab was correct, so the next step is a cone biopsy. I can't find too much about AGC online, and it is apparently SO RARE! That part is scary as well as the likelihood of something under the surface / invasive. I have always followed up on paps, even been to an gyn/onc in past early in my 3rd pregnancy since pap reults were moderate to severe (dysplasia?) but all those biopsies were negative too. ANyway, that's about it so far. My dream is that they mixed my pap up with someone elses! Not that I wish this on anyone but it all doesn't seem to add up...

 
Old 07-10-2012, 09:39 PM   #5
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OH73 HB UserOH73 HB User
Re: Cone Biopsy Experiences

Hi Janimalover - sorry to hear you're dealing with the AGC results as well. It's definitely no fun. AGC is a rare result - I've seen anywhere from 0.2% of paps to around 1.5%. Sounds like your doctors know what to do with it though. Glad to see your results have all come back benign so far and that your doc actually took a second look. It really does sound like you're in good hands. Maybe you're one of the lucky ones whose AGC result comes back all clear - I think it's around a 50/50 chance. If you have any cone biopsy questions, let me know. Mine was 8 days ago - mostly manageable with motrin until about 5 days post-surgery. When the packing started coming loose, there wasn't enough vicodin in my cupboard to stop the pain for a 24-hour period. But from what I've read and researched, most folks are good to go the next day. Still waiting on my cone results - and trust me, I've been calling! Happy healing thoughts headed your way!

Last edited by OH73; 07-10-2012 at 09:41 PM.

 
Old 07-11-2012, 09:03 PM   #6
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Re: Cone Biopsy Experiences

THank you so much for responding and info! I am meeting with my oncologist/surgeon this fri and making a list of questions - it's already huge with 22 detailed questions! But if you can think of an imperative questions having already been through this - could you share?? I wasn't sure if AGC are able to be definitively dx'd as via cervix (endocervix?) or uterus ever? I was wondering, if there could be uterine involvement, why a D&C wouldn't be suggested to explore more of the lining as she did 2 uterine biopsies to begin with -- and she said that only sampled 1-2% of uterine lining while D&C samples 30-40% - a definite question I'll be asking her but curious if you may have some insight -- I also have 3 kids , 2 are small (6 months and 3 years) and am wondering how long you think it might take for me to get back to full Mom duty - i don't think this fort will hold down long without me chipping in, not to toot my own horn ; ) How sore were you upon discharge from the hospital - I am wondering if I will have trouble climbing the stairs to get to my place, but mostly what I have read is that the procedure turns out "less awful" than expected. I have a ton of other questions -- I'll bombard the doc with those, but greatly apprciate your valuable feedback!!

 
Old 07-11-2012, 11:44 PM   #7
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Re: Cone Biopsy Experiences

Hey lady - from what I've researched, AGC can't be diagnosed as cervical/endocervical or uterine without the biopsies. The typical recommendation is a colposcopy with cervical biopsy, an ECC (endocervical curettage - which from what I've read seems to be the main problem area) and a uterine biopsy only if you're over age 35 or have other symptoms. Not sure why they don't do a D&C on everyone with those results, but I think it's because they mostly expect the problem to be in the cervical/endocervical area. As far as post-cone, I don't think you'll have any problems at all. I would liken the pain at worst to severe menstrual cramps - and for me that was only the day of the surgery and then again 5 days later when the 'packing' broke loose and came out. Other than that, motrin handled everything fine - I was just a little more tired than usual. Naps were fabulous for a day or two afterwards. Ummm...and not to scare you, but I just got my cone results back tonight. They found a tumor - invasive adenocarcinoma - stage 1B1. Radical hysterectomy with a check of the lymph nodes. I'll have more info next Wed after I have my appointment with my gyn/onc, but for now things kind of suck. Keeping my chin up and focusing on the fact that they caught it early. But still.

 
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Old 07-12-2012, 08:36 PM   #8
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Re: Cone Biopsy Experiences

Hi again OH73, thanks for further info/advice, I am sorry to hear that what they found is invasive & you need the rad hyst, but yes, thankfully caught early! Good luck with everything and keep your chin up. Not to sound silly, but knowledge is power, and that you've got a lot of! So to pick your brain some more, do you know approx size of cone biopsy tissue sample -- the reason I ask is that I have seen most people refer to the size of theirs in mm (say as little as 2, as high as 5mm) but mm seems minute!! COuld this be cm we are really dealing with? Since the cone doesn't get to the top of the ecc, is there another biopsy (top hat?) that some might get? I feel awful asking you these questions when you're dealing with your own but I appreciate your answers. Feel well : )

 
Old 07-13-2012, 08:24 PM   #9
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Re: Cone Biopsy Experiences

Thanks for the well-wishes! I think I've spent the last 2 days in major denial - have stayed off the boards and haven't thought about it. I'm sure being busy was part of it - went and bought a new car yesterday (my car was totaled by a drunk driver on my way to see my oncologist for the first time 2 weeks ago), and finally went and got my hair done today. Yay distractions!

Ok, on to your questions - I honestly don't know how big of a cone they took on mine. I'll find that out for sure when I see the doc again Wednesday and I get a copy of the pathology report. I researched some - I read somewhere that the average is 1 inch by 1.5 inches. But who knows. I think whoever posted that there's was 2-5mm was wrong - that's not nearly enough. I do know that my tumor was at least 8mm - and the point of the cone is to get a lot of the endocervix. So cm seems more likely. And as far as any other biopsy - I've heard of the top-hat thing, but honestly don't know anything about it, and I don't want to give you hearsay or guesses.

Please feel free to ask me any other questions you might have - yeah, I'm dealing with my own crap, but I would have loved to have someone out there to answer my questions when I had them! So I will do my very best to answer yours.

Last edited by OH73; 07-13-2012 at 09:06 PM.

 
Old 07-19-2012, 01:06 PM   #10
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Re: Cone Biopsy Experiences

Hi guys,

I just went through all this crap too, so I will give you a brief rundown. I had an abnormal pap back in December that came back as AGC favor neoplasia. Had a colpo and ECC that came back with a benign condition and CIN 1. I also had my pap re-read at a cancer center, and they agreed with the first pathologist. The guidelines suggest that anytime you get a result that says favor neoplasia, you need to have a cone biopsy because there is a higher chance something is lurking even if the initial biopsies are negative or mild dysplasia. I consulted with a few different gyn/oncologists before I found one I felt comfortable with, and I had the cold knife cone biopsy about 3 weeks ago.

I JUST got my results back yesterday, and everything was negative. My gyn/oncologist thinks I probably did have Adenocarcinoma-in-Situ based on two reviews of my pap, but that it somehow either spontaneously regressed or was taken off during my initial colposcopic biopsy.

I just wanted to put this out there to let you know that not every pap that comes back as atypical glandular cells favoring neoplasia means you have invasive cancer! Now, I can finally relax and hopefully start trying to have a baby in about 6 months.

Good luck to both you!

EDIT: I wanted to add that I have *knock on wood* not had any issues with the cold knife cone biopsy, just some goopy brown disharge for a week or two following surgery. My first period seemed slightly heavier and a bit more crampy than usual, but otherwise I have been totally fine. Just took 800 mgs of Motrin the day of surgery. Also, I believe they took 1-1.5 cm of cervix, and they don't anticipate any issues with future pregnancies (but obviously I would still get at least one ultrasound to make sure my cervix looked fine).

Last edited by Sunflowers13; 07-19-2012 at 01:09 PM.

 
Old 07-23-2012, 02:54 PM   #11
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Re: Cone Biopsy Experiences

Janimalover - just wanted to update you now that I know my cone size. (Got a copy of my pathology report - yay!) My cone was 2.4 x 2.3 x 2.3cm. And unfortunately, my doc didn't tell me all the bad news on the phone last week - he saved that for the follow up. I don't just have the invasive adenocarcinoma - I also have squamous cell cancer. So I'm one of the really unusual ones with adenosquamous cancer. Oh, and they found cancer cells in the blood vessels that go to the lymph nodes. Whee hoo! PET/CT scans this week, then radical hysterectomy and pelvic lymph node removal on 9 Aug. Hopefully I'll be all clear after that - getting kind of tired of this cancer crap.

Sunflowers - Wow! So happy for you that your cone came back clear. That is wonderful to hear. Thank you for coming back and posting that. Seems all that gets posted is the start of someone's journey without follow-up news, or all bad news. And congratulations on starting your family soon - best of luck to you!

 
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