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    Old 11-09-2008, 03:30 PM   #1
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    Question Waiting to have cone biopsy

    Ladies,

    I am a healthy 25 y/o female with a positive h/o HPV and abnormal PAPs. All of my prior PAPs have just been ASCUS (abnormal squamos cells of an undetermined significance), but my most recent one came back HSIL. I went back the following week for a colpo and biopsy. The biopsy results came back with severe dysplasia not only outside of the cervix, but inside as well. That has my doctor concerned, especially because at the time of the biopsy he said that my cervix was very inflamed. He also took cultures at that time to rule out infection, and those were negative. Interstingly enough, the PAP that he did also with the biopsy came back negative. That is a little worrisome!

    He has now referred me to a gynecological oncologist to be reviewed and scheduled for a cone biopsy. Through my most recent research, I have learned that some symptoms that I have been having some symptoms that I maybe should have reported earlier. Painful intercourse, some mild bleeding after intercourse, pelvic pain (which I have always contributed to my endometriosis), increased vaginal discharge...

    I am becoming more worried that this problem may have been going on for a while, despite having negative PAPs, especially because my most recent one was normal desipte my biopsy results. i am just nervous and scared that this really may have a chance at being cancer.

    I would appreciate any feedback from those of you who have been in this situation. I think I am losing my mind! Everything has just been a waiting game at this point and it's wearing on my sanity! Also, any input on useful questions that I should be asking the oncologist Tuesday would be wonderful. I tend to lose my thinking ability when I am anxious!

    Thanks so much in advance!
    Michelle

     
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    Old 11-09-2008, 04:31 PM   #2
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    Re: Waiting to have cone biopsy

    Hrhpv+ ASCUS should have been evaluated by colposcopy the very first time. I advocate getting copies of ALL lab and path work. Do not simply rely on what the nurse tells you over the phone. Many times, they have neglected to inform me of significant findings because they didn't want to freak me out...what, so when I eventually DO find out, I won't freak out then? I don't do a lot of freaking, but anyway, my point is that some gyns, including my former gyn, are still in cave man mode about the Bethesda system and colposcopy referral. Paps, if inaccurate, ALWAYS underestimate the grade of the lesion(s) and they are not terribly reliable. Sometimes the right area is not sampled, oftentimes the CT reading the pap is tired, under pressure, and can easily miss a high grade cell or two in the 1000s of cells on the slide. Have you ever seen a pap smear slide? My brother is in pathology rotations right now and says these things are easy to miss especially in inexperienced eyes. The presence of hrhpv is what you need to focus on. Why did your doc repap at colpo? He should have been taking biopsies left and right, and aggressively scraping the canal! I hope the new gyn-onc can give you answers.

     
    Old 11-09-2008, 05:28 PM   #3
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    Re: Waiting to have cone biopsy

    At the time of the colp he did biopsy 4 spots but before he did that also repeated the PAP. I have always REALLY liked this gyn, and we all know how hard those are to find! I am now starting to re-evaluate this situation though because he seemed a little hesistant to give me a refferal to someone else.

    I work for the huge health-care provider of our area and because of that I can only have testing and procedures done at their facilities. When he recommeded this cone, I told him that I would need to be referred to someone in my healthplan (he is a provider but does not have provelages at any of the hospitals). He said that he would have his billing person look into it. I was insistent that he would be wasting his time as I just had to re-new my benefits and am positive of my agreement. My husband was with me at the time and demanded that we get the referral, and he did not seem very happy about it. Also, as my husband wasasking basic questions about the chances of infertility with this procedure since we have no children together yet, he just told my husband not to be a "worry wart" and that everything would be fine. I did not appreciate that answer very much.

    I know that so much is still unknown about HPV and how it can progress, but I would like to think that my physician could be slightly more compassionate about this. I will be requesting that my records be given to me. I feel like such an idiot for not having done it by this point. I have always been very trusting with my current doc. He always seemed to be pretty well educated about HPV. When I did research before on the ASCUS findings, it seemed reasonable to me at the time (18 years old) that I didn't have much to worry about. At this point I am just growing frustrated!! I hope that the oncologist is able to answer some of my questions!

    As a side note, I know a few women who said that they were kept overnight after their procedure. It seems to me that this is out of the ordinary, is that correct? I also am curious as to whether I can be expecting my biopsy results the day of surgery?

    Thank you so much for your reply and understanding!

     
    Old 11-09-2008, 05:50 PM   #4
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    Re: Waiting to have cone biopsy

    Hi Michelle, I might have a few things that can help and answer some of your questions.

    First of all, I've learned that just because I like a doctor doesn't mean he/she knows what they are doing. I've also learned the reverse is true. While I prefer a doctor I like, I'd rather go with one I wasn't as comfortable with as long as he/she knows what they are doing!

    When you go to the gyn/onc take a written list of questions. Leave room for writing in answers. You *could* take 2 copies of questions, one for you/hubby, and one for the doctor.

    It makes me mad for you and your husband that your doctor brushed off your husband's question about fertility! Since the cone removes the cervix, the concern should have been addressed. While I don't know of the cone affecting fertility, it might affect your cervix's ability to hold the pregnancy. This is usually handled by something called a circlet stitch in the cervix to keep the baby in. The baby is usually born by caesarian.

    I found a few places online that gave some basic questions to ask a gynecological oncologist. I put "questions ask gynecological oncologist" into a search engine and got a lot of good results. When I saw my gyn/onc for the first time, I took one of those list of Qs and added my own to it.

    I've had 2 cold knife cone biopsies and was home within 2 hours of being wheeled out of the surgery suite. I've never heard of anyone staying overnight after a cone. I would think that is extremely rare.

    I hope you check back in with us and let us know how you are doing!

    Take care! (((((hugs)))))

     
    Old 11-09-2008, 06:00 PM   #5
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    Re: Waiting to have cone biopsy

    I absolutely will be checking back in with you! You ladies have been so prompt with your replies and very helpful and insightful! I should have been here sooner. I like to live life as a procrastinator though!
    What was your recovery like after the cone...length, restrictions, pain? To be quite honest, I am looking to a little time off work, but not if I will just be at home miserable!

    Thanks again, you women are the BEST!

     
    Old 11-09-2008, 07:03 PM   #6
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    Re: Waiting to have cone biopsy

    I had my first cone on a Friday morning, was home before noon. I slept most of the day and took my pain meds (don't know if I needed them). I got out of bed around 4:30 or so. I was groggy and had period like pains (if I recall correctly). I stayed at home on Saturday, I don't recall significant pain. I went to the grocery store with hubby on Sunday and I think I only took over the counter ibuprophen. I was back at work on Monday (I teach in a middle school). I might have taken some ibuprophen that day, but I don't recall.

    There was vaginal rest restrictions, but can't recall if it was 2 or 6 weeks. I'm sorry I can't remember.

    I spotted a bit for about a week, but nothing after that.

    The reason I can't recall about my pain is because I had a UFE last December (but I remember THAT pain!), I was diagnosed with high risk HPV in January, had the colposcopy and ECC in March, the cone biopsy in April, had another cold knife cone and my hysterectomy in May. It is all a blur! It was a whirlwind cancer diagnosis. I can still say that I've NEVER had a bad pap (even post op), but I had cervical cancer.

    Anyway, back to your original quesiton, I don't recall the pain being overwhelming. I remember pain the day of- and a little the day after, but after that I don't have any real impression of pain.

    Take care!

     
    Old 11-10-2008, 04:40 AM   #7
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    Re: Waiting to have cone biopsy

    Since I am in the health-care profession I run around all day long, EVERYDAY. I am hoping that it will either be ok for me to return, or that they will give me a nice vacation!

    Thanks for your answer! I hope you remain healthy now! Isn't amazing that your paps were always normal despite everything!

     
    Old 11-10-2008, 04:46 AM   #8
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    Re: Waiting to have cone biopsy

    Yep! Paps do not detect all cervical changes. They generally detect squamous cell changes, but rarely glandular. My cervical changes were detected with the ECC. That's why I encourage so many women to ask for that during a colpo.

    I am fortunate my doctor decided to do the ECC "just to check"!

    Last edited by Administrator; 08-02-2014 at 07:40 AM.

     
    Old 11-10-2008, 03:49 PM   #9
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    Re: Waiting to have cone biopsy

    Pickle, do you remember if you have always had the traditional cotton swab pap or the liquid based pap (ThinPrep or Surepath)? I have read Surepath is the best. Anyway, liquid is easier to read. It COULD be why your abn. glandular readings were missed.

    I am so amazed how on the ball your doc was. How great for you. I just read you got two clears in a row in checkups. Brava!

    Michelle, the fertility issue is a totally legitimate concern. I would've had surgery sooner than this if I'd already finished having kids, and/or couldn't.

    Your first ASCUS was at 18? Was that also hrhpv+? It is true that repap for adolescents (< 20 years old) is often times adequate, but persistent abnormal readings ought to have prompted a colposcopy the second, or at the very latest the third time! Pickle is right about docs. You can like one fine but he may not know squat.

    Last edited by BE 123; 11-10-2008 at 03:50 PM.

     
    Old 11-10-2008, 04:33 PM   #10
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    Re: Waiting to have cone biopsy

    My first abnormal was at 18. The doc I saw at that time did do a colpo and sent me home and told me I was fine. Having been so young, I never thought twice about it. Well, he left the area, so I switched to my current gyn who came highly recommended. He had a complete copy of my previous records. I had I think 2 normal paps with him every 6 months and then the third was ASCUS again. Since then I have kind of been repeating the cycle of 2-3 consecutive normals and then one ASCUS.

    At my very first appt with my current doc he did the HPV DNA test which was obviously positive.

    I have a very strong family h/o cancer, with my mother having a hysto from cervical cancer, and breast cancer in the right breast about 7 years ago. she had a lumpectomy and radiation. 2 years ago in April it returned. She had a bilateral mastectomy that time, and did not want chemo. Her father died of cancer, my aunt also has cancer (her sister). I just feel overwhelmed.

    My appt with the gyn/onc is tomorrow, so I will let you all know what happens!

    Thanks so much, you are wonderful women!

     
    Old 11-10-2008, 05:28 PM   #11
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    Re: Waiting to have cone biopsy

    Brie, I've had thinprep paps for years. I remember asking for (and paying extra for) the thin prep as far back as the early 1990s.

    Now, Michelle, check back with us after your appointment tomorrow!

    Last edited by Administrator; 08-02-2014 at 07:41 AM.

     
    Old 11-12-2008, 04:59 PM   #12
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    Re: Waiting to have cone biopsy

    So, I saw the doc yesterday...sorry for the delay in getting back here. He wants to do a LEEP/Top Hat on Monday. He repeated my colpo while I was there. He didn't really say much,though he was VERY thorough in reviewing my medical history and family history. He was very thorough will all of my questions and with his explanations. I like this guy, and he's rated as one of the top 8 gyn/onc's in Boston. It'll be a while until I have any real news....just have to KEEP WAITING.

     
    Old 11-12-2008, 06:01 PM   #13
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    Re: Waiting to have cone biopsy

    Go do some fun things. Occupy your mind and body in doing something you love. Worrying won't hurry the reports.

    And then, when you can't rein in your concerns, come here and post. We'll at least listen. We might even have a word or two of advice that helps! ((((hugs)))))

     
    Old 11-12-2008, 08:28 PM   #14
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    Re: Waiting to have cone biopsy

    Michelle, you are so lucky to have access to great docs in Boston! I had the same procedure as you, but by laser, not LEEP. My concern is he did not take out enough, and 5 days post surgery I have HORRIBLE (I mean REALLY FOUL) smelling discharge. Wonder if I should call him. Anyway, good luck!

    Pickle, the ThinPrep and Surepath do include an ECC but sometimes the glandular abnormalities are too far up to detect with a short brush. When I ask for an ECC I'm told the liquid cytology is all I need. ARGH.

     
    Old 11-16-2008, 05:07 AM   #15
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    Re: Waiting to have cone biopsy

    Thanks for the words of wisdom ladies! Brie, Hope you get an antibiotic on board! Tomorrow is the day.... I have been trying to stay occupied. I don't know that cleaning my house is fun though?! I know I won't be sleeping well tonight, the good news is that anesthesia will take care of that! I will let you all know the news when I know it!

     
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