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Old 07-09-2008, 09:20 PM   #1
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Worried

I have just joined the boards after a month of waiting on the edge of my seat for news. After reading a lot of posts, you all seem very helpful and would like some help - or reassurance that things will be okay.

Today my doctor and I decided we were going to shedule me for a LEEP. I was nervous and with the options she gave me, that sounded the best. Since coming home I have been researching and it sounds great, but now I have a list of question to call the doctor with tomorrow. Have any of you had a succesful pregnancy after the LEEP? Have you researched any other options that seem safer than the LEEP? I'm not sure of the stage I have, I just know the doctor said it's on the first level of tissue but a few parts cross into the second level (only a very small area, if it matters). Again, I am calling tomorrow for more details (after the shock has subsided).

How often does everything clear up thanks to this? Is it likely things will get worse? Do all precancerous changes eventually lead to a hysterectomy? I'm trying to get as many questions as possible to ask when I call again, but would also like personal experiences/research. Should I ask for an ECC since many of you seem they are a good idea prior to the LEEP?

The doctor said she does it under anesthesia in a hospital but some opt to do it in office. Have any pros/cons with hospital vs in office? I'm young, never had a baby so I'm not sure when it comes to levels of pain.

 
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Old 07-10-2008, 07:32 AM   #2
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Re: Worried

Hi there! Sorry you even have a need for this board but we're glad you're here. So let's jump on in. There are a few things that aren't exactly clear from your post. So I'll ask them and if you know the answers...great. If not, add them to your list for the Dr.

1. If you're at the stage of having LEEP, then I assume you've had a PAP and a Colpo?? Is so, what were the results of each specifically (i.e. CIN I, CINII, CINIII etc)?

2. Did the colpo include an ECC? That's when the ECC would have been done most likely. What were the results?

3. Where was the dysplasia or in other words how much of the cervix is involved (depth and breadth)? That will give you an idea of how much they need to take of the cervix with the LEEP and gets at your questions regarding pregnancy.

4. What is the Dr's anticipated plan over the next year (i.e. number and frequency of follow ups etc.). This will give you an idea of this Dr's aggressiveness and overall "feelings" on this situation. Dysplasia gives rise for concern to some Dr's and others take a more laid back position kinda like "oh this happens all the time" . You have to decide which personality works best for you.

The Dr. will feed off of you many times. If you ask detailed questions, they are more likely to think you understand and will provide you with greater detail and technical information (i.e we took x biopsies plus ECC. Path shows CIN1 at this site with ......"). Otherwise they may give you very general information like "it's on the surface with a little bit going further down". Every one is different so only you can decide the amount of detail you want.

As an aside (and you probably know this but just in case)--A pap is simply when they swipe the cervix with a q-tip to get a sample of cervical cells. It is a screening only.

A colpo is diagnostic and it is when they wash the cervix with a vinegar solution, look at it with a special light which will cause abnormal sites on the face of the cervix to turn white. If there are abnormal sites, they will biopsy those areas. Many Dr's even with a normal colpo will still choose to do an ECC which is further up the cervical canal.

Hope this helps and I'm sure someone will stop by to add more.

 
Old 07-10-2008, 07:36 AM   #3
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Re: Worried

Oh and by the way...NO... ALL PRECANCEROUS CELLS DO NOT LEAD TO HYSTO. In fact, the vast majority do NOT. As long as you and your Dr. keep on top of this with appropriate treatment and follow up, this is a highly treatable condition. Some women ride the roller coaster for years and then clear. Others clear in a matter of months and never have a recurrence. It sounds like you're a long way from a hyst at this point!

Take care!

 
Old 07-10-2008, 09:24 AM   #4
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Re: Worried

Mommyandwifey gave some fabulous information! There isn't much I can add right now.

Find out what level (and type) of dysplasia you have. That is very important. Get a copy of your pathology report. You have a right to a copy.

ARgh! I want to add more, but my coffee hasn't seeped into my brain yet! I'll check back later! Please ask whatever questions you think of. We'll answer them as best we can (if we have sufficient caffeine in our systems! )

 
Old 07-10-2008, 10:16 PM   #5
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Re: Worried

Thanks ladies! I actually didn't call today, it's been a hectic month for me. Hopefully I should be calling tomorrow. I'm not sure on any specs, I don't think I was ready to think about that at my appointment. I have had a pap and colpo, there was only one small area that was biopsied and again, I'm not sure what level it is. I opted for the LEEP because to me it sounded the best, have any of you had one? I would like experiences. She asked if I wanted to do it in the hospital under general anesthesia or in the office with local anesthesia. I'm not sure which would be best really (scared of anesthesia since my mom has bad reactions to it). I'm trying to get a feel for what I have to look forward to in the coming months. I will get back as soon as I have more detailed information and have included in my list of questions what kind of dysplasia, size of area, was an ECC done, etc.

 
Old 07-10-2008, 10:31 PM   #6
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Re: Worried

I have had 1 colposcopy with an ECC. I have had 2 cold knife cone biopsies. My doctor chose cold knife cone because it preserves the edges (margins) of the tissue sample so the doctor/pathologist knows the extent of lesion(s). And actually, after taking the cone sample she basically did a LEEP and cauterized the margins on the remaining cervix, this reduced post-procedure bleeding.

From what I've read of a LEEP, I'm glad I had my cones, even though they were under general anesthesia. I've read of patients having them in-office and their tales make me cringe. I'm glad I was knocked out (though I *was* a bit apprehensive prior to the procedures).

I think my doctor chose the cone because she suspected my atypical cells (originally told they were atypical glanadular epithelial lesions and adenocarcinoma in situ) were cancerous she wanted to preserve the margins.

Anyway, I hope that helps.

 
Old 07-10-2008, 11:29 PM   #7
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Re: Worried

Pickle Eyes, might I ask how you are doing now? After those procedures that is.

And the cold knife cone, does that take a larger area than the LEEP? If not, I will ask the doctor about the possibility of doing the cold knife cone and a LEEP cauterization, to preserve margins.

So you have heard bad things about in-office LEEP? I will most likely just do it in the hospital because I don't want to get nervous last minute and compromise the procedure.

It is very comforting to speak to others who have been where I am before. I don't feel like I'm shooting in the dark. Thank you

 
Old 07-10-2008, 11:41 PM   #8
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Re: Worried

Mommyandwifey, Pickle eyes, you are both very good with giving hope and information.

 
Old 07-11-2008, 09:16 AM   #9
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Re: Worried

Thanks for the compliment, Deepintheheart! That means a lot to me.

I am doing pretty well. Recovery from the first cone biopsy took about 2 weeks. I felt much better after about 4 or 5 days, though. The second cone biopsy was the day before my hysterectomy. So the discomfort I'm feeling is from the hyst, not the cone.

I think the cone can take more tissue than the LEEP, but not necessarily. Again, the LEEP singes the edges on the tissue that is taken and the tissue that is left. What my doctor did was cut, so the tissue sample had good margins, then singed the edges of the remaining cervix.

What I've read about women's experiences with the LEEP is it hurt to have the cervix numbed. They smelled the burning of the cervix/flesh as they doctor did the LEEP. Both of those things ick me out. I read one woman who really wanted it down in the office said that her doctor told her she HAD to stay still, no matter what. *I* wouldn't want to trust my ability to not flinch if something hurt. So, I was perfectly happy with being knocked out for the cone. Just my own opinion and preference.

 
Old 07-11-2008, 06:11 PM   #10
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Re: Worried

Thanks so much Deepintheheart! During my "waiting" period, sometimes it helps pass the time to give hope to someone else. In return, the women here give me hope. I have had only a pap and a colpo. My situation is that I had an ASCUS (Atypical squamous cells of undetermined significance)pap followed by a colpo that confirmed mild abnormalities. In fact, the abnormalities hadn't made it to even low grade dysplasia (CIN I). Also I have tested negative for high risk HPV. All of that is good news and I thank God for it. Having said that, I am still required to repeat paps every 6 mos to make sure there is no progression. Hopefully, it will do the opposite and regress to a normal PAP. So I just wait and pray in 6 month intervals. I fill the time listening to stories like yours and hoping to lend some help. I know when I first got on this roller coaster, I was a complete WRECK. I was depressed, hurt, scared....you name it...i was it! This board has been terrific for me. Even family and friends are great but there's something different talking to people who are going through it with you.

In any case, please post anytime. I know on some of my restless nights, I've been here in the wee hours of the morning. Take care! By the way PICKLE...that was an excellent idea about taking two copies of your questions and leaving space to write answers!! EXCELLENT

 
Old 07-11-2008, 08:31 PM   #11
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Re: Worried

Thanks, Mommyandwifey, I read that idea at another (hyst) discussion board. I thought it was a good one!

 
Old 07-14-2008, 10:13 AM   #12
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Re: Worried

So I feel a bit more relieved. I called in to see if I could ask questions over the phone (since I live far from the office) or if I'd have to come in to ask. The nurse actually took the questions and then got back to me with chart in hand to answer. The only thing that was never answered is prediction type of questions because she said it's easiest to wait until we have pathology reports after the LEEP. I asked about the cold knife cone (to preserve edges) vs. LEEP and she said that the doctor tries to decide that during the LEEP depending on the area and how "contained" it is in one spot. From what I remember, it was a very small area, the doc said smaller than a pin head, so that may have an effect. As far as future plans, I will have a 6 week checkup where we will decide how my cervix is healing and how often we need to re-pap, every 3 or 6 mos. We are also going to stay on track with keeping an eye on it. To get copies of my results, I am waiting until I go in for my pre-op visit (only $25 and sign release form). I did have an ECC during my colpo and she says all results were benign. I also have mild to moderate dysplasia (CIN I - CIN II). Do you know more about those stages? She says that she is not sure of the size but the doc should be able to tell me when I go in for pre-op. Now I'm just praying and waiting to get scheduled.

The idea of writing a list helped, even over the phone, since I was able to write in all my answers. I asked a lot of questions I didn't know I had thanks to your suggestions. A lot of my worries about pregnancy were also answered since she said there are "fixes" for either scarring or incontinent cervix. Also, we should be able to start TTC after a good pap or two. The procedure will either be done in office or in hospital depending on ease with scheduling, but both will be done under anesthesia (good, I'm scared of pain!).

I feel so much better with my questions asked. Now the waiting game continues.

 
Old 07-14-2008, 10:23 AM   #13
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Re: Worried

It sounds like you got some good information there, Deepintheheart! I'm so glad the suggestion to write your questions helped! Please continue to check in with us!

 
Old 07-14-2008, 01:38 PM   #14
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Re: Worried

Hi there Deepintheheart...sorry you have had to find these boards but glad yu did- they are very very helpful here.
You have gotten great advice from Mommy and Pickle. Since everyone's experience is different -- I'll add mine in case you will find it helpful.
My dx was Adenocarcinoma in Situ after a bad pap, and positive colposcopy.
I have had 2 cold knife cones under general anesthesia ( 4/17 and 6/13) with absolutley zero pain and complications post operatively. I have never had a problem with anesthesia like you mentioned your mother had so I was not worried about that part. Personally- you could not pay me to do a CKC under general in an office...no matter what anyone says....I would never take the chance. The coloposcopy and ECC/cytology done in the office was enough for me. Your only under for about 15 minutes when they do it- it is more nervewracking leading up to it than actually going thru it.
I had my follow up exams at 4 weeks and my dr used stitches versus the leep to minimize bleeding; which are still dissolving at this time- however I am cleared for "normal activities" .
Initially- I was told I would need a hysterctomy but- I am 39- and have no children ; I was interested in preserving fertility. So we opted to pursue this course. As of right now the second biopsy was negative- so we can assume the first biopsy got it all out... the plan is to have another colposcopy in 3 months. In the meantime- the plan is to get really aggressive with TTC.
If the cervix turns out to be incompetant- they can perform a circlage' to keep it closed up tight until delivery. But this isnt likely given the amount of tissue that was removed.
I hope this info helps- you can see we all have similar but different experiences. Whatever you choose- stay positive.

 
Old 07-14-2008, 02:58 PM   #15
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Re: Worried

NikkaBlu, thanks for sharing your story! Hearing others' stories is really helping me cope. I wish you the best with clearing up and have fun TTC! I'm in my early twenties but we still want to TTC early on (even though it wasn't the original plan) "just in case." Because if ever faced with hysto with no children, I will admit I will be brokenhearted - even though I know there is adoption, etc. And they did say they could scrape away scar tissue if it built up or (did you call it circulage??) stitch the cervix for incompetent cervix.

Oh, in regards to LEEP in office, I would still be under general anesthesia just as I would in hospital. I believe she has an OR in the building. I don't think I could undergo a procedure like this awake! The colpo/biopsy wasn't too bad for me, I was more nervous than anything. She did a pap before starting the colpo and that combined with the speculum was the extent of my "pain" well, it was that dull ache of being stretched out LOL. I hope recovery isn't bad.

I feel a little bad that I haven't posted in any other threads yet but my own, but I actually think I'm in the limbo stage of self-pity and don't think I can offer words of wisdom yet. So thank you all for helping me and people like myself through these times. Hopefully soon I can start coming in with encouraging words for others.

Good luck NikkaBlu, and I hope we all keep coming in here with good news. It's a shame we all have to meet under these circumstances.

 
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