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Cancer: Cervical & Ovarian Message Board
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Old 06-21-2013, 10:58 AM   #1
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bagwatch HB User
New to boards. Just received results of colposcopy/biopsy.

I'm 27 years old and have never had children. I had a pap smear in May which came back abnormal (first abnormal pap smear and had the last one 2.5 years prior - I tried to get it every year, but they said it wasn't necessary). But they scheduled me in the next day in late May. I had a colposcopy, and she took 2 biopsy samples. Doctor confirmed that I had HPV. It was an ok procedure, just pinched a bit and I had light bleeding for a week, but I was so distressed I took the day off work and couldn't focus on anything. Three weeks later, no call from the doctor's office, so I contacted them today. The doctor called me back directly and told me that it came back high-grade and that it was only on the surface and not the canal. She didn't use other medical terms. Some nurse was supposed to call me and talk about the results and treatment options, but she never did. She said that the recommended treatment is that I would just wait and get another pap smear and colposcopy again in 6 months and if it doesn't clear in 24 months we would consider the LEEP. She said the reason they're monitoring me now instead of going ahead with the LEEP or other procedure right away is that it is more of an option for women who are done having children, and that it can cause complications with child birth later like pre-term labor.

I can't believe I have to wait out this thing while holding onto this ambiguity. Of course I don't want to jump into a procedure that can interfere with childbirth as it's still an option for me. But I'm really stressed out, and I can't focus at all and am easily more agitated.

I've talked with my boyfriend who I've been seeing for the past 8 months. He's a great guy, but he's pretty hands off and doesn't reach out to talk to me unless I go to him and expel my feelings. I've also talked to my supervisor about this because I am a mental health clinician and it was important for me to let my feelings out to do my work. I guess people think that I would be used to being able to deal, but I literally cannot focus at work and actually have pretty big issues around seeing parents be abusive toward their children or working with children whose parents have cancer while faced with my own questions of mortality and being a parent one day.

So how do you guys who had similar situation deal? What happened? Am I gonna be ok? Should I even be worrying this much when I'm young and getting the preventive care that I need?

 
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Old 06-21-2013, 08:04 PM   #2
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Re: New to boards. Just received results of colposcopy/biopsy.

I'll begin by saying that 3 months ago I did not know anything about Cervical Cancer, HPV, Copolscopy or anything related to it.

I have however researched a bit and obtained second and third opinions for my situation.

Based on my experience, I would recommend that you obtain the biopsy results from the lab or doctor and get a second opinion as well.

In one year I went from a normal pap to an abnormal pap in 2013 which necessitated a copolscopy, cone biopsy and a hysterectomy.

My copolscopy showed high grade CIN with possible microinvasion and after the Cone Biopsy they realized that it was early stage cancer with no real alternative than having to get a hysterectomy. Feel free to check my posts for details.

Find out from your biopsy what "High grade" really means because you may want to remove these cells before they cause more damage. CIN 1 tend to disappear on their own but CIN3 will probably need treatment.

I had both the cold knife cone procedure and the hysterectomy 2 weeks later, and I can tell you that the Cone Procedure was relatively painless compared to the hysterectomy and I was able to recover quickly.

I can not begin to imagine what would have happened to me had I waited 3 years, as recommended now, for my next pap.

The good news for me is that pathology after the hysterectomy was negative, so all cancer is gone and all I need to do is to get my checkups every 3 months for a couple of years.

Best of luck.

Last edited by lyda721; 06-21-2013 at 08:52 PM. Reason: previous post did not save

 
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Old 06-26-2013, 12:28 PM   #3
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Re: New to boards. Just received results of colposcopy/biopsy.

I just turned 28 in April and I don't have any kids yet. If this is something very important to you, I know how you feel!

I've actually had a longer history with this. Here's a little bit about my experience. About 6 years ago I had an abnormal pap. after the colposcopy it came back CIN1. We waited, retested, and it progressed. She performed the LEEP. After that, I went 6 years with everything being okay. Fast forward to last year, and I had an abnormal pap. Did the colposcopy again with an ECC, and I believe it showed CIN11. My gyn and I sat down and had a long talk about my options. She felt with as fast as mine was progressing, that the LEEP was my best option. I reiterated again how I felt about having children and she said that she'd do everything possible to make sure that was still an option. So I went ahead with another LEEP. I retested with a pap a few months later and the results were not good. She recommended that I saw a gynecologist oncologist for further treatment.

First thing I told the gyn onc was that a hysterectomy was not an option at this point. So I he did another colposcopy and it confirmed the CIN111. At this point he said that a 3 (yes I said 3!) LEEP was necessary but that he was going to do it under general anesthesia so he could very selective on what he took. (I had total faith in him as he is the leading gyn oncologist in my area). I am now 8 months out from that and I have had all normal paps!

My question to you is, is the high grade the HPV or is it the dysplasia? And did they give you a rating of CIN 1, 11, or 111? If they said that it was high grade dysplasia then I would be asking for further treatment or getting a second opinion. Getting a second opinion with a gynecologist oncologist is always an option too.

Having the LEEP done for the first time shouldn't impact your ability to have children. After having 3, I have been told that once I get pregnant that I will have to be monitored closely because my cervix may not be strong enough to hold a baby full term, but there are different things they can do to prevent you from having miscarriages or going into preterm labor. I feel better knowing that I have taken care of the possibility of having cancer but also preserving my ability to still get pregnant.

Sorry this got so long, but I wanted to sympathizes with you, and to let you know that you are not the only one going through this, even if you feel like you are! Big hugs to you, and if you have anymore questions, feel free to ask.
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Old 06-29-2013, 10:05 AM   #4
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Re: New to boards. Just received results of colposcopy/biopsy.

I would get a copy of the pathology report and also get a second opinion. My understanding is that the LEEP has minimal risks involved relating to future pregnancy, but that is also something you should discuss with your dr.

In terms of dealing with this, it's good that you're talking to someone and you just have to try and stay calm. The only way I could deal with it was to map out all of my next steps, so I could do what I had to once I got the results. But, it took about 2 months from my initial pap result to the LEEP results, and I was a mess for most of that time, so I know what you're going through. Dysplasia is treatable and in younger people, it often resolves on its own, so that may be another reason the dr. suggests waiting. I would find out what CIN level you are at (I, II or III) and then go from there. High grade is usually II/III, but if it was II, that might be another reason the dr. recommends waiting.

The bottom line, though, is that you need to do what you feel comfortable with, and if you have any concerns about waiting 6 months, I'd discuss it with your dr. or get a second opinion.

 
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