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Reoccurence after LEEP, really scared Reoccurence after LEEP, really scared

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Unread 06-22-2004, 04:51 AM
Reoccurence after LEEP, really scared

Hi Bizzy,
I'm new here also and have been having problems with CIN this year. I had LEEP 12 months ago for CIN II on the cervix and CIN I in the cervical canal. Since LEEP i've had two occurances of abnormal paps. After the first abnormal pap, which showed CIN I, my doctor used acid to treat it. I've just had my second abnormal pap after LEEP which showed ASCUS. ASCUS is unspecified atypical cells so it doesnt seem to be CIN again. I have to go back for another pap in 3 months. Having to go for paps every 3 months is definately nerve wracking. Also i live with knowing i have almost every risk factor for developing cervical cancer. I was DES exposed and have HPV. I was so floored when i found out i had HPV. I felt so ashamed to have a sexually transmitted disease. Later i learned how prevelant HPV is and you shouldnt be ashamed. I can completely relate to your fears and confusion. I'm so glad to have found this site. I'm not the only one going through this. The ladies here can understand my fears which i think sometimes my family think are unfounded. Take care and nice to "meet" you.
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Unread 06-22-2004, 06:50 AM
Reoccurence after LEEP, really scared

Thank you all so much for your kind words of support and encouragement. This site is wonderful, and it so nice to have a chance to talk to other people that have gone through the uncertainty of all of this. My boyfriend has been great, but he is one of those totally optimistic people who says we will be fine no matter what, no matter what we have to do we will, etc. And, I know that is true but I also have worries and anxiety going on in the back of my mind all the time! As for my family, I haven't even told anyone. I think it is because it is caused by HPV that I have been ashamed to tell my mom or my sisters, etc. I feel like I should because I need to make sure they are getting checked regularly, etc., but I am also pretty embarassed about it -- even though I know it is so common. Well, I plan on calling my doctor tomorrow if I don't hear from her today since it will be two weeks today since the biopsies were taken. I will keep you all posted, and thanks so much!
Unread 06-22-2004, 07:58 AM
Reoccurence after LEEP, really scared

Well, I just talked to my doctor. She said that she had two different pathologists read the report and it is still showing CINII in a small area. She said that I have three options, another LEEP (which may be risky since I want to have children someday and that can increase problems, although it is a small area and she only took a small amount last time too), wait and see and just get another PAP in three months or get another opinion from another OBGYN. I am leaning towards the LEEP again, because I don't really want to wait and see if it develops into something more and then have to have even more surgery done. And I really trust my OBGYN so I don't really feel the need for a second opinion. Does anyone know a specialist in this area in the Columbus, OH region? I am supposed to think about it and call her back in a few days. Geez, how am I going to think about anything else! My main concern with doing the LEEP again of course is the complications that it can cause with pregnancy, but I also don't want to just postpone it and let it grow. Any advice on this would be greatly appreciated, thanks!
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Unread 06-22-2004, 10:00 AM
Reoccurence after LEEP, really scared

You might like to consider a second opinion with a gynecologic oncologist. They are the specialists when it comes to female cancers and precancers, and they know all the most current treatment and surgical procedures. Even if you ultimately have your own gyn do the procedure, it might be nice to hear some input from a specialist.

You can find a gyn/onc here:

Gynecologic Oncologists

Keep us posted on how things are going and what you decide to do! Good luck!

Unread 06-22-2004, 11:01 AM
Reoccurence after LEEP, really scared

Thanks so much. If you go and get a second opinion, do they have to do another colposcopy and take more biopsies? Or do they just go off of the other reports?
Unread 06-22-2004, 02:16 PM
Reoccurence after LEEP, really scared

I would definitely make an appointment with a gyn/onc. You can all your gyn's office and ask who they refer patients to when they need a gyn/oncologist. If you make an appointment with a gyn/onc be sure that he has been sent all of your records. Most likely he will do a through exam and then decide if another biopsy is necessary or not.

There is no reason why you need to tell anyone HOW you got cervical cancer, or CIN. It's none of their business. I have always tested negative for HPV, and always had negative pap smears, for 30 years. Suddenly I had a large cervical cancer. No one ever asked how I got it! I wouldn't have been able to tell them anyway. People care if you have cancer, they don't need to know all the details. Most people don't want to know, especially men!

Make an appointment with a gyn/oncologist. They are the experts on this and have far more experience than a ob/gyn.

Unread 06-22-2004, 04:04 PM
Reoccurence after LEEP, really scared

Now that you have another set of results I think a second opinion with a gyn/onc is a great idea if that is available to you. Don't be scared off by the "onc" part, they are the experts in how lesions progress.

Keep this in the front of your mind. Most women who develop dysplasia are fixed with a LEEP. (Although the terms "fixed" and "cured" really don't apply because the virus is still capable of causing problems even after a hyst.) Of the ones that the LEEP doesn't take care of, a second LEEP often does. And if you continue to be one of the unlucky ones a hyst is indicated and that's not too bad when measured against your life.

The good thing is the progression is usually slow. (The reason why a gyn/onc is such a good idea.) Many of us don't face the hysterectomy decision until later in our childbearing years. I carried two pregnancies on a shortened cervix so in my case one laser and two leeps had zero impact on my fertility or ability to carry babies to term. Everyone has a different experience though and that is a conversation to have with your doctor. I only offer hope.

Please keep us updated on how you are doing. Wishing you the best.
Unread 07-06-2004, 02:17 PM
Reoccurence after LEEP, really scared

Well, I talked to a gyn/onc and they aren't able to see me since I don't technically have cancer yet. I guess since it is still pre-cancer they suggest just getting a second opinion from another gyn. I really don't see the point in delaying the somewhat inevitable, so I decided to just go ahead with another LEEP. My dr. said the area she removed before was small, and this one is even smaller. I just figure the longer I wait, the more time I have to let it get bigger and then they have to take more of my cervix which worries me re: chances of carrying a baby. If anyone has had two LEEPs and has experience in this area I would greatly appreciate hearing about it. I am scheduled to go in on the 20th. I am nervous, but most of my nervousness is for three months down the road and if I will be getting the same news again. Ugh. Thanks so much for all of your kind words and support thus far, it is appreciated more than you know! : )
Unread 07-06-2004, 04:21 PM
Reoccurence after LEEP, really scared

That's really odd. Lots of women who are still in the precancerous stage see gyn/onc's. Perhaps it was the policy of that office? Have you tried another gyn/onc?

Anyway, yes, several ladies have had 2 LEEP's or LEEP and cone and went on to successfully carry a pregnancy. You will be considered a higher-risk pregnancy, but that just means they'll check you a little more often.

Has your doc discussed the possibility of a cone? It does typically remove a greater amount of tissue, but it's easier to tell if clear margins were achieved since the edges do not become blurred by technique.

Good luck! I will be keeping you in my thoughts and 'ers.

Unread 07-07-2004, 08:23 AM
Reoccurence after LEEP, really scared

She said it was a very small area, so the LEEP should take care of it (this time). It is strange because the margins were totally clear last time. I guess normally all of the cells are close together, but is it possible for there to be another spot that is not by the rest of the cells? This one was not directly by the original spot. I just have to wonder if this one was there before or if it is brand new. Who knows? As for the gyn/onc issues, there was only one female that I could see (per insurance) and she is the one that I called. I know it may sound strange, but I really don't feel comfortable unless I was seeing a female doctor.

I guess the biggest thing that I am scared of is repeated recurrences. It just scares me so much that it is going to keep showing up. And since I don't know if this is an old spot or a new one, I just don't know what to think!!! Thanks for your support. : )

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