I'm now getting ready to have a second LEEP done and am wondering if anyone had a similar situation and later developed cervical cancer.
Last November I had an abnormal pap and a colposcopy showed CIN III due to HPV. I had the LEEP done immediately and the gyn/onc told me my margins were clear and there was nothing to worry about. I had follow up pap tests every four months and they all came back fine. Prior to having my hysterectomy in March, I had the fourth pap test but didn't get the results until the day after my hysterectomy was done and it came back abnormal. Since all my previous pap tests came back normal, I figured it was better to leave my cervix & ovaries alone. Guess I was wrong.
I'm scheduled to have another pap to make sure the most recent one was correct before having another colposcopy done. If it also comes back abnormal I'm trying to decide whether to do the LEEP or just have my cervix removed to be safe. The idea of having another surgery and doing something that may be too drastic has me crazy. I'm just very worried about getting cervical cancer and would rather have an "extra" surgery than get cancer at 35.
I'm sorry this is so long, but I thought it was better to explain the situation and it also helped me to vent.
I am not sure I am understanding. I too had an abnormal pap, cin3, colposcopy, and a leep this past September thru November. My margins were clear and the next pap was clear. My last pap two weeks ago showed new dysplasia. I am 38 and want to have a child, so I am going to the Cancer Institute in New Jersey to seek opinion from a gynecological oncologist. Why did you have a hysterectomy? Was it due to other ailments, or just the dysplasia?
I too have been diagnosed with CIN III, Carcinoma in situ and am going to be having a cone biopsy. The decision that I have come to is that no matter what I am going to have the hysterectomy afterwards due to fact that I am scared of a recurrence aftewards. I suffered severe post partum depression and it has never fully gone away so we are going to try Lupron for a few months and if all is well we are going to remove the ovaries and the uteris. Is it best to have the cervix removed at the same time or what? I am very scared of this disease and don't want to take any chances. Any advice?
I also had a fibroid, not too big, but embedded in my bladder. They stuck a hot needle in it, and it shrunk a little bit, but no one has ever indicated that there was any other problems with it. I guess that will be another issue to discuss with the gyn/oncologist.
I have been dealing with this; in a couple of weeks, I have my followup Pap from a cryo in February. When I had my surgery two years ago (for presumed ovarian CA, which turned out to be severe endo), it was after years of normal Paps. The first abnormal one was about nine months ago.
I have the same questions you do, should this next Pap still be positive: do I just go to surgery, do not pass "Go"? Or do I go on to LEEP, wait, and hope that takes care of it all? I've also had some conflicting results -- one Pap was HPV-negative, but now it's positive; have gotten diagnoses of "condyloma" all the way to CIN (don't know the stage).
Complicating my issue is that I have significant adhesions from the surgery (and the ones that preceded it) and so surgery is NOT going to be easy in any way. OTOH, like you, it's not a chance I want to take; although I'm older (48) I have young kids.
My plan is to ask for the DNA testing, should the Pap be HPV-positive. There are a few strains that are higher risk, and if I have one of those, there's no question but that I need surgery (at least in my mind). "When" is another question; my DH is really set on finally taking a real vacation this year (we've not even gone away for a weekend in over three years) and I can't miss work for surgery plus vacation. I'm holding off on doing ANY planning until this next Pap comes back and I have some more information to work with.
I sure hope your next Pap turns out OK. In the meanwhile, taking folic acid and taking care of your body and immune system (to try to fight off the virus) are important steps that may help you keep those Paps normal from here on out!
I feel I can relate to you. I've had abnormal PAP's since I was 18 years old. I've NEVER had a normal PAP. Last October when I had my LEEP, my doctor assured me this would do it. There was only a 10% chance it wouldn't work. My first PAP came back high-grade dysplasia. Where do you go from there? I had talked with my husband and I decided to have the hyster. There is just nothing else left to do after 10 years of treatments that have failed. DR said there is not satistic on 2nd LEEP's, because so few women have to ever have a 2nd one...
So, at 28, I'm having a hyster... and I think I'm okay with it...
I wish all of you luck with your subsequent procedures. I had a LEEP for CIS in February. My first post LEEP pap isn't until June. I'm already starting to worry. I'm going to job training in San Franciso the two days before the pap and I'll have to take a red eye back to make my pap but there is no way I'm going to miss it. It is four + months after my LEEP which I think is a little to long anyway. I am really hoping I don't have to have any further procedures. I'm 32 and put off having children because I thought I had plenty of time left. The thought of ending up with a hysterectomy scares me to death. For those of you who are having hysterectomies for other reasons but have had bad paps, my opinion is that I would definately have my cervix taken out too. It is just too much of a what if concerning cervical cancer.
I hope that everyone in this thread continues to post on what is happening. It is comforting to me to know that other people are out there. Especially other people that have this happening to them before they had a chance to have children. And other people who had clear margin LEEPs and still had this come back.
I read your reply and your recent post about your problem with your doctor. I'm sorry you are having so much trouble with him. From my experience, you may not be able to get the slides from the lab and your gyn/onc may have to request them for you with a consent form from you. What ever you do, don't take know for an answer from your first doctor. They are your records and legally you have a right to copies of them.
I wish I could give you a definitive answer about keeping your cervix. On this site, I have read both pros and cons about it. The only thing I can say for sure is that if you have it done at the same time, you reduce the amount of anesthesia you have. Personally, had I had the results of my pap test prior to my hysterectomy, I would have had my cervix out. Please read more posts or even put up a new one before you make a final decision.
Thanks for the advice about the folic acid. I will go out tomorrow and by a huge bottle of it. I'm hoping your pap test comes back normal, but if not, did you consider taking care of your health and then taking a shorter vacation with your family?
I was wondering if you got a second or even third opinion before you made your decision. I can understand your frustration, but from your post I'm guessing that you are not sure about what you want to do. Before you have this done, you need to be absolutely sure that you are OK with it.
I'm glad you found my post helpful. I know how frustrating it is waiting to have the first pap and then waiting even longer for the results. Hopefully, the results will come back quickly with negative results.
Thank you all for your replies. I go back to the doctor tomorrow for a "double check" pap, a CA125 blood test and a blood test to determine which type of HPV I have. I'll keep you all updated and hope you will do the same.