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Old 07-30-2009, 08:54 AM   #1
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Cone biopsy after precancer in cervix!!!! At 24??

All,

I wanted to first write and say how excited I am to have come across this board. A bit of background (more than I've probably told any of my close friends)...I'm 24 and went in for a regular pap with a new doctor about two months ago. I hadn't gotten once since the end of college i.e. a year and a 1/2 ago.

My pap came back abnormal (AGUS), we did a cervical, cervix canal and endometrial biopsy (spread out over two appts of course) and TODAY at 2:45 pm...aka 3 hours from now I am getting my results and setting a treatment plan.

My doctor told me when I was doing my endometrial biopsy (2 weeks ago) that the cervical biopsy came back as precancerous (gasp!) and that we would wait to get the results from my endometrial before setting a plan moving forward.

She called me to mention that we would be discussing a cone biopsy treatment today for the cervical cells. She didn't mention anything regarding the endometrial test so I am hoping at least that comes back negative.

To top it all off my wonderful sister just gave birth to worlds cutest supermodel baby about 2 months ago. So through all of my recent fertile uncertainty and testing, I've had to put on a happy face for my sister and new (1st!) niece. It's just so painful to know that if the cone biopsy does indeed come back as more invasive than we thought that her happiness is something I can never naturally have.

Either way, I just wanted to vent because I am extremely nervous for my consultation today and feel like 24 is really young to have to start dealing with infertility and cancer. I know there are far younger, stronger women and girls that have dealt with this but I just really hope we can get a negative endometrial test result, conduct the cone biopsy and get 0% precancerous/cancerous cells in the follow up.

Really makes you think about yourself, life, friends and family in a whole different light when you are thrown into this situation. I've just always imagined my life as being a mother (later....not now) and to have that aspect be in jeopardy is just breaking my heart.

Any sort of advice, if you have been through this or know someone, is genuinely appreciated. It's great to meet other women who understand the terms "squamous and glandular cells" as well as "precancerous" and "cone biopsies!"

 
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Old 07-30-2009, 10:05 AM   #2
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Re: Cone biopsy after precancer in cervix!!!! At 24??

27 year old
hello sasie so sorry to hear that you are going through this
I am also going through the same thing, I currently have high grade dysplasia and just did my second biopsy yesterday and will have to wait for a week to get the results. My next step will be the cone biopsy,which makes me very nervous. I have a daughter already but would really like to have another child. All these issues are coming at a time when I finally found someone that I could see myself with forever, great timing huh. You didn't mention if you have HPV , as high risk HPV is the cause of 70 to 90 % of Cervical cancer. The good thing is that we have age on our side. Many women on this site has children after leep, cone biopsy etc. so try not to worry too much about that and please understand that worrying can be hard not to do. I am a worried by nature but I trying hard to be strong. I will keep you in my prayers, please keep me posted.

 
Old 07-30-2009, 11:04 AM   #3
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Re: Cone biopsy after precancer in cervix!!!! At 24??

Hi Sarsie, I'm sorry you are having to deal with this!

It sounds like your doctor is being proactive, that is great!

It sounds like you've already had a colposcopy (possibly with biopsy) and an ECC, and the endometrial biopsy. That is good. If the atypical glandular cells are still showing up, then the next course of action is a cold knife cone (CKC) biopsy (not a LEEP- I can explain why later, if you wish).

It is possible that your doctor will mention that you need to go to a gynecological oncologist. Don't freak out. That is actually a good step. Gyn/oncs are much better trained in how to deal with atypical glandular cells than most gynecologists.

Make sure you tell your doctors your desire to maintain your fertility. There are several things the doctor can do (assuming you keep having atypical glandular cells/ adenocarcinoma in situ/ or early stage adenocarcinoma) to maintain fertility.

Take a written list of questions to your appointment. Leave room to write answers. This always helps me stay focused and "remember" things after the appointment!

Let us know how your appointment goes today! You are in my thoughts!

(((((hugs)))))

 
Old 07-30-2009, 11:54 AM   #4
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Re: Cone biopsy after precancer in cervix!!!! At 24??

Quote:
Originally Posted by jumpfesta View Post
You didn't mention if you have HPV , as high risk HPV is the cause of 70 to 90 % of Cervical cancer.
I just wanted to comment on this. HPV is actually responsible for virtually all (99.8%) of cervical cancers not 70-90. The Gardisil vaccine (which is where I assume this number is coming from) protects against 4 strains of HPV (2 of which are responsible for 90% of GW and the other 2 strains are responsible for 70% of cervical cancers)

Pickle always has plenty of excellent information and she is always very supportive. If the cone biopsy does not provide clear margins (which can be tricky with AIS) sometimes a second or even a third cone (depending on how much cervix they take each time) can/may be performed. If these are not successful or if it is found to be early invasive cancer you may be a candidate for a trachelectomy which can save your fertility. Best wishes to you!

Last edited by simplynat; 07-30-2009 at 11:56 AM.

 
Old 08-03-2009, 12:28 PM   #5
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Re: Cone biopsy after precancer in cervix!!!! At 24??

Thanks for all the replies ladies! I actually conducted the HPV test when my abnormal pap came back, it was negative. I did the Gardasil treatments back as a teenager so either that or just luck let me get the negative word on that.

You would think that would be reassuring to know that I DIDN'T have HPV, but it actually made me wonder how I was in such a minority (young age, no HPV, etc).

So my appointment was just a consultation. My doctor was really great, drew alot of pictures which helped explain the situation a bit further. He did say that I had moderate dysplasia and wanted to do a D+C and cone biopsy. I understand that the D+C is to test the uterus tissue and the cone is to treat and test the cervix.

I have it scheduled for August 12th. He made me feel alot better that as of yet the uterus hasn't been affected so my fertility is good, just have the risk of preterm labor or late term miscarriage. I'm sure we can somehow get around that with a suture or early bed rest.

Has anyone gone through the cone biopsy recently? Mine is scheduled for a Wednesday and I'm not sure if I should request off Thursday as well.

Pickle- thanks for the next steps...I am hoping we can get clear margins off of the first cone biopsy. Has anyone undergone multiple cone biopsies?

My honest thoughts are that I am hoping the uterus is still healthy and that we can just treat the cervix with one cone biopsy (fingers crossed!) Getting my blood work done this week and surgery next week!

 
Old 08-03-2009, 05:23 PM   #6
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Re: Cone biopsy after precancer in cervix!!!! At 24??

I'm glad you got back with us. It sounds like you had a really good appointment and got a lot of your questions answered. That is always so comforting!

I can't remember, are you having a cold knife cone biopsy or a LEEP? If it is a CKC, you may want the next day off just so the effects of the anesthesia wears off and you are rested. I'm not sure about what to do if you have a LEEP.

 
Old 08-03-2009, 05:48 PM   #7
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Re: Cone biopsy after precancer in cervix!!!! At 24??

Sarsie - sorry you are having to deal with this and at so young an age. Did you have your Gardasil series before becoming sexually active and did you complete all 3 shots on schedule? Did you get the shots in the US or in another country? Just wondering as it's only been on the US market for 3 years and you mentioned you got it in your teens which would have been 5-10 years ago? I'm sure you know it is exceedingly rare to be in your situation all factors considered. So, I'd press for copies of all pathology reports and even get re-reads on pathology to be 100% certain you really are dealing with glandular dysplasia and really do require a cone bx - at 24, with the shots behind you (assuming you got them before becoming sexually active), AND a negative hpv test, your chance of AIS or its precursor is virtually nil. Perhaps you could get your hands on the Roche AMPLICOR for type-specific testing - this test is far more sensitive than the Digene hc2 which is the hpv test your lab used. This is a reasonable request given your situation. If your doctor refuses, you might request immunohistochemical staining to look for hpv - there are ways to see if hpv is responsible for this (by looking for its metabolic footprints) other than testing for the virus itself because apparently that has not proved informative in your case. It's also wise to do this to make sure something else isn't going on - perhaps it's a non-hpv related pre-cancer of the cervix and while those are *incredibly* rare, rare also means it happens to someone. Best.

 
Old 08-03-2009, 05:52 PM   #8
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Re: Cone biopsy after precancer in cervix!!!! At 24??

One more question, Sarsie - your pap came back AGUS (glandular abnormality) but your bx showed squamous dysplasia? ("moderate dysplasia" is the common interchangeable term for CIN2) Ideally, the pap and bx would match (and the specimen would confirm). Again, I would push for the whole picture, if you haven't already.

Did you have any symptoms or any indication something might be wrong?

 
Old 08-05-2009, 11:31 AM   #9
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Re: Cone biopsy after precancer in cervix!!!! At 24??

Quote:
Originally Posted by Sarsie1 View Post
Thanks for all the replies ladies! I actually conducted the HPV test when my abnormal pap came back, it was negative. I did the Gardasil treatments back as a teenager so either that or just luck let me get the negative word on that.

You would think that would be reassuring to know that I DIDN'T have HPV, but it actually made me wonder how I was in such a minority (young age, no HPV, etc).
Hi again, I just wanted to comment in case you didn't realise but testing negative on the HPV test does not mean a woman doesn't have HPV - it only means that the test did not detect an ACTIVE infection. The Digiene test only detects active infections of HPV. It's possible that the HPV infection which caused the abnormality has since been cleared (dormant) and sometimes the dysplasia will soon regress as well once the active infection has been cleared or it could be that the the viral load was too low in order to be detected by the test. Another possibility is that the strain(s) of HPV that caused any of your dysplasia is not one of the strains that the Digiene test covers as it doesn't detect 100% of the genital strains of HPV.
Squamous and glandular dysplasia/cancer of the cervix are caused by HPV. (clear cell and small cell are not) Clear cell adenocarcinoma (which is incredibly rare) is caused by DES expsosure of the mother and DES hasn't been used since 1971 so most DES babies are over 35 years old.
Anyhoo - just thought I would throw that out there.

 
Old 08-06-2009, 09:31 PM   #10
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Re: Cone biopsy after precancer in cervix!!!! At 24??

This may not be the same thing, but at 25, I had an irregular pap and had my cervix frozen to kill precancerous cells and never had another issue or irregular pap, but I'm 56 now, so that was long time ago and I don't know what the cone you're talking about is....so my situation may have been different.

 
Old 09-14-2009, 11:15 AM   #11
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Re: Cone biopsy after precancer in cervix!!!! At 24??

While a pap smear is harmless , cone biopsies can result in cervical damage and infertility . You should be ware of this risk .

 
Old 09-14-2009, 11:18 AM   #12
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Re: Cone biopsy after precancer in cervix!!!! At 24??

Gardisil had not been proven to decrease cervical cancer . It does not reduce grade three leisons and these are the ones that are relevant to cervical cancer.It reduces the proliferation of certain HPV strains but increases others that cant thrive in its absence.

 
Old 10-12-2009, 01:33 AM   #13
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Re: Cone biopsy after precancer in cervix!!!! At 24??

I was 25 when diagnosed with AIS. I had a cone biopsy which thankfully left clear margins and a couple of months later I was pregnant (15 weeks now ).
It would have been smart to wait a little bit longer, but we didn't plan it. Anyway, to my complete surprise I am not even cosidered high risk! Cervical lenght is fine at the moment (5.1cm) and will be monitored at every regular appointment (every 3 weeks in our country) and that's it.

I also worried a lot about fertility when I found out about the AIS. It does make you rethink your priorities and made me decide not to wait much longer to have children.

Good luck with the cone and every future appointment!

 
Old 10-12-2009, 06:46 AM   #14
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Re: Cone biopsy after precancer in cervix!!!! At 24??

Jana, you have way more cervical length than most women with never-operated on cervices. Thanks for checking in again. All the best to you for your pregnancy!

 
Old 10-20-2009, 08:31 AM   #15
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Re: Cone biopsy after precancer in cervix!!!! At 24??

k i had a n colposcopy done 3 months ago, which was the removal of precancerous cells and im going for a follow up tomorrow. do the follow up tests usually come back with the same results? is there apossiblity that the treatment failed?

 
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