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Old 06-14-2007, 03:26 PM   #1
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fluffybottom HB User
Severe Dysplasia and Cone Biopsy

I am 35 years old, have never had children but would like to at some point. I had a Pap come back abnormal and my doctor asked me to come in for a colposcopy. When I came in, she told me that the Pap had indicated that I had severe dysplasia. She did the colposcopy and took four biopsies in the process. She told me that I would have to have a cone biopsy but the amount she'd have to take would be dependent on the results of the biopsies. She said that it would either be done under local anesthesia or general. At the time, she asked me if I had any questions but I think I was so shocked at the time and focused on not crying that I drew a big blank.

So...

What is the procedure like? If it's local anesthesia, how do they administer it? I read that they do it with an epidural -- I am bashful to admit that having a needle inserted into my spine is freaking me out. Does it hurt? How does it feel after it's worn off?

How do you feel after the procedure is done? The day after? The week after? How much time should I take off from work? After you heal, does sex feel different?

How will this affect my ability to have children?

I'm just really nervous and I don't have any family in the area so I feel a bit alone in all this. I have a boyfriend but we just started dating and I haven't told him this -- it just seems like something I don't want to burden a budding relationship with. Obviously I'll tell him when I have to have the procedure done but, for now, I just want us to enjoy each other's company without having to drain him for emotional support.

Last edited by fluffybottom; 06-14-2007 at 03:28 PM.

 
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Old 06-14-2007, 04:02 PM   #2
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MichelleNTX HB User
Re: Severe Dysplasia and Cone Biopsy

Also -- a pap smear can NOT tell you if you have severe (CIN III) dysplasia -- it can only detect the presence of abnormal cells. Only the biopsies taken during your colposcopy can grade your severity of dysplasia. Have you received the results back from those yet?

 
Old 06-14-2007, 05:03 PM   #3
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k2626 HB User
Re: Severe Dysplasia and Cone Biopsy

Hi Fluffy. I know how you feel. I am 32 and had my first biopsy 8 months ago, everything came back fine until my last one which was high grade. I go in for a LEEP next week. I have known several people who have had a LEEP and they have children but there is risk just as MichelleTX has noted. My thought is I want to be sure to get these cells out of me. After all, if I dont save myself from cancer then I definately will not have children. I think the laser is the best treatment in terms of minimal risks with children in the future, but from what I hear it is not as available as other treatments.

Keep us posted....

 
Old 06-14-2007, 07:42 PM   #4
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LAgirl81 HB User
Re: Severe Dysplasia and Cone Biopsy

Fluffybottom-- I wanted to say that I'm sorry you're going through this but you have found a great place to come and vent and talk to other women who are going through similar experiences. I haven't had any procedures done yet to treat my dysplasia, but after reading the article Michelle posted it seems like laser is the best procedure for preserving fertility. Perhaps you could ask your doctor if that is an option for you and if they don't perform it there at your doctor's office, see if you can get a referral to get the laser done elsewhere. Do stress that the preservation of your fertility is of the utmost importance to you and maybe the laser procedure could be used in your particular case. Of course, treating the severe dsyplasia is your priority now, but if you have options, do be insistent upon which procedure would have the least ramifications on your fertility and that is just as effective as treating the dysplasia.

Also, regarding your new boyfriend, try not to stress too much about that. I know it's really stressful feeling that you are burdening him with your current health situation, but you definitely need his support and affection now more than ever. I was in a similar situation as you are now last year when I first found out I had HPV and had to have another biopsy-- I had only been with my boyfriend for one month at the time and I was an emotional wreck, but he was extremely calm, patient and supportive. Luckily my family and friends are near me now to help me mentally cope with my dysplasia, so if you're boyfriend is the only closest person to you now, then you'll definitely need to rely on him for emotional support. I hope it all works out for you and remember, whichever procedure you choose, many women on this board have successfully had children afterwards. Best of luck to you!

 
Old 06-15-2007, 10:24 AM   #5
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torigirl HB User
Re: Severe Dysplasia and Cone Biopsy

fluffybottom: Welcome to the board! Glad that you are here and you will be glad too as you get some great advice from some wonderful ladies!

I had the cold knife cone biopsy on May 10th (along with a ECC and D&C) to treat my AIS. I had general anesthesia and would recommend that route if you have the choice because you will be under for the whole procedure. I have heard some women that have had the local and just the smell from cauterization and other feelings of pressure were something they were not too fond of....but really, it's up to you. Using the general, was a piece of cake and waking up after it is completely over is a huge relief.

I had very little cramping after my procedure and most of the bleeding was immediately after the surgery when I stood up. I had a prescription for Vicodin, but didnt' even had to use it. I had my surgery on a Thursday and was back to work on that following Monday. There will be some restrictions for after surgery like no heavy lifting and strenuos exercise, but your doctor will give you details on that at your pre-op appointment. My doctor told me to wait 6 weeks (some doctors say 3-4 weeks) to have intercourse again, so it's only been 5 as of yesterday, so I can't give you an answer about that yet. I'm a bit apprehensive about it because I've heard that bleeding can still occur after intercourse because of the delicate tissue in the cervix.

There have been several ladies on this board that have had the CKC and have gone on to have sucessful pregnancies. Your doctor will keep a watchful eye on your during your pregnancy and they may even give you a cerclage (sp) which is a "stitch" of sorts that would help you carry the baby to term.

I'm sorry you don't have any family in your area...I was in the same boat, so I did rely on the advice, suggestions, and great support from the ladies on the board. If I was having a bad day, or nervous, or just plain mad that all this was happening...I would tell everyone and I would always get replies from ladies empathizing with me and giving me the words I needed to just keep going and keep a positive attitude. So, with that said, lean on us!

Take care and God speed!

Tori

PTL!

 
Old 06-15-2007, 01:35 PM   #6
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REDZIE407 HB User
Re: Severe Dysplasia and Cone Biopsy

Hi Fluffy,
I Had A Cone Biopsy Done On January 5th Of This Year. I Was Terrified! I Went To The Hospital And Had General Anesthisea. I Also Had A D&c At The Same Time. I Had Very Mild Cramps, No Bleeding, Just A Very Small Amount Of Discharge. I Was Fine. I Took About 4 To 5 Days Off From Work And Just Took It Easy. No Lifting, Ect. I Had No Bleeding Till About 2 Weeks Later When My Period Came And It Was Normal, Not Heavy. Everyone Is Different. As For Getting Pregnant I Hear You May Have A Little Trouble "holding" The Baby, But Your Dr Can Advise You On That. I Would Ask For General, I Think That Is Better Than An Epidural. Good Luck And God Bless...redzie

 
Old 06-15-2007, 02:46 PM   #7
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karen32 HB User
Re: Severe Dysplasia and Cone Biopsy

I had a leep done with local anesthesia in outpatient, three years ago tomorrow. For a local, a needle full of anesthetic is injected into your cervix to freeze it. The doc gave me four or five injections. It was probably the worst part of the procedure for me. If you go the local anesthetic route, ask your doc if the anesthetic contains epinephrine, which will cause your heart to pound/race. This is a normal response to epinephrine, but better to be aware of it beforehand than to think you are going to have a heart attack because no one informed you it might happen

I did not feel the leep tool at all. I heard it. I did not smell any tissue burning, although some women here have said they have. By the end of the procedure I was joking with the doctor and the nurse. The procedure itself took about 5 min, it was the prep that took longer.

Ask your doctor to clarify what type of cone biopsy you will be having: there is a leep cone biopsy, which cauterizes the tissue after it passes through and minimizes bleeding - this is done either locally or under general anesthesia. The cold knife cone biopsy is done with a scalpel and is ALWAYS done under general anesthesia.

By all means discuss the laser option with your doctor. Please know that with leep and ckc, the tissue removed is sent to pathology to confirm the original biopsy diagnosis. Laser ablation destroys the tissue and it cannot be tested by pathology. I am unsure if the laser conization would provide a tissue sample to be tested, you can check with your doctor about that. Laser is typically used for lesions that do not involve the endocervical canal. If there is endocervical canal involvement (meaning the lesion extends into the canal); or the biopsy indicates carcinoma in situ, then docs usually opt for a cone biopsy (leep or cold knife) to get the pathology done on the tissue.

I had my leep done for biopsy confirmed severe dysplasia. My leep pathology actually showed a 2mm invasive cancer - Stage 1a1. This means I warrant a more involved follow up process than if I had only had severe dysplasia. I will have annual smears for life. With severe dysplasia, you can have three normal then go back to annual and eventually back to once every three years. The actual instances of the colpo biopsy missing a microinvasive or invasive cancer are MINIMAL but not perfect. That is why having the tissue tested following the procedure is important (to me, anyway).

Talk with your doctor and be comfortable in your decision. Hope this helps.

 
Old 06-15-2007, 04:19 PM   #8
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fluffybottom HB User
Re: Severe Dysplasia and Cone Biopsy

Thank you everyone, for replying and answering my questions. I'm still very anxious and oscillate between feeling reassured and panicking over worst-case-scenarios. Logically, I know that I shouldn't worry -- for the moment, things are beyond my control and if it all works out okay, I'll have wasted all this time and energy worrying for nothing. However, emotionally, I cannot seem to keep myself from stressing out. I have been very distracted at work and am motivated to do little else than sleep.

I called my doctor's office this afternoon to see if the tests had come back -- I knew it was too early but I am so terribly anxious.

So anyone has any good strategies for distracting oneself from all the worry? My mother tells me just not to worry but that's not exactly helpful!

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Old 06-15-2007, 07:30 PM   #9
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LAgirl81 HB User
Re: Severe Dysplasia and Cone Biopsy

Hi again fluffybottom--

I think we all know what you're going through. The waiting game and the imagining the worst-case scenarios is something we've all gone through. I remember when I found out about my mild/moderate dysplasia results form my biopsy I couldn't hold it together-- but I think it's perfectly natural to feel upset and worried about what lies ahead. The only thing I think is that you should not let those feelings overwhelm you and dictate your every thought. I think reveling in those moments of fear/worry is okay for a little bit but it would be detrimental to your mental health if you let that fear and anxiety overwhelm your every thought to the point of not being able to concentrate on anything else.

And you know, your mom is right. Don't worry, my mom told me the exact same thing but it's true-- worrying does us absolutely no good and only causes us more mental stress which can affect us physically too! And that can't help the dysplasia. A little bit of worry now and again is ok, but again, don't let that incapacitate you or distract you to the point of not being able to think about anything else. Use your fear and worry constructively and turn it into something proactive-- research all that you can about your particular diagnosis, learn as much as you can about the possible procedures, talk to all of us on the board about pros and cons about those procedures, etc. The more you know about your own condition the more control you will feel of your own body!

As far as tips for distraction? Keep yourself busy with your work! During your free time, surround yourself with your friends and support network (family, boyfriend, girlfriends, etc). Go out and have some fun with your close friends (a night out, a movie, shopping, weekend trip, ANYTHING) and that will help keep your mind off of it. Yesterday my good friend and I celebrated the end of our 3rd year of grad school and pampered ourselves with a sushi lunch and massages followed by a day at the beach-- I haven't felt so relaxed since all my dysplasia ordeal started! Maybe try and do something like that with one of your girlfriends for a day -- anything to keep your mind off of it and to treat yourself. I know it's really difficult, but as time passes you get more used to your situation and not let it overwhelm your thoughts as much. But there will be moments were your mind reverts back to the worry-- let it occupy your thoughts for a few minutes, but then snap yourself out of that worry and continue what you were doing before.

I hope these tips help! Do know we know what it's like and coming here to vent is one way of coping as well. Take care and go out and have some fun!

 
Old 06-21-2007, 12:06 PM   #10
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fluffybottom HB User
Re: Severe Dysplasia and Cone Biopsy

Well, my biopsy results have come back and, thankfully, not cancer! The word 'relief' doesn't even cover it. It's not even as bad as originally thought -- my doctor suspected severe dysplasia but it came back as moderate (although it was present in all the biopsies -- four were taken).

So I will be going in for an in-office LEEP with local anesthesia. The nurse is supposed to call me back today to set up the appointment. I hope this will rectify things.
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Old 06-21-2007, 01:50 PM   #11
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jessicab72 HB User
Re: Severe Dysplasia and Cone Biopsy

Fluffybottom - That's great (relatively speaking of course)! I hope your LEEP results will be just as good. Keep us posted.......

Jess

 
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