Has anyone here had a "Top Hat" LEEP? Here is my history...had a pap in late January that only came back ASCUS (which is usually due to irritation/infection). They decided to do a colposcopy just to make sure since I have a history of cervical cancer in my family. I had an appt. with the OB/GYN I was referred to THINKING that I was going to get a repeat pap, but instead it turned out to only be a meeting to discuss the upcoming colposcopy (that I didn't know about). Well, my dr. said at the most I would get some freezing, but that I "shouldn't worry" because this was just a precaution to be safe & rule out anything serious which he thought would not be the case. He really thought things would be resolved by the colposcopy.
Two weeks later I have the colposcopy & in the weeks before it I was a bit worried, but tried really hard not to think about it. I had a roller coaster of emotions--thinking I was being paranoid & that this really was nothing to thinking WHAT IF they find something? Well, I did do a lot of deep breathing & thought of places I wished I was at instead of thinking of what they were doing to me. It was uncomfortable, but not too horrible.
Everything seemed to be going fine & I actually cracked a smile because I had been so paranoid thinking about the worst & he had yet to make any negative comments. Then he says, "Oops, there are some areas" & the nurse proceeds to whip out the longest pair of scissors I have ever seen! I just about had a heart attack seeing those things! I literally begged for pain meds before he clipped, but he said that would hurt more than the actually clipping, so we counted down together & it only felt like someone pinching you, but it didn't hurt like I thought it would. What a relief!
Well, I saw the look on the dr.'s face & I knew all was not well. You know how you have that gut instinct? He then said there were some areas, but probably nothing too serious & that I would most likely need some freezing.
Ok, fast forward a week to biopsy results. I call in & the nurse tells me instead of the freezing they will do the LEEP procedure. I try to get more details as to why & what exactly did my biopsy results show? Is it CIN or what?
The nurse won't tell me anything, so she says she'll either call me back or have my dr. call me back. Ten minutes later, my dr. calls & he says he has to be more aggressive. The results came back way more serious than expected. Than he tells me how surprised he is with the results & I in return tell him how SHOCKED I am with all this. He then says it is creeping up my cervix & that at the most I can only wait a month to get the procedure done to make sure all of it is taken. I ask him what I have & all he says is that in stages of one to four, I am a stage four, aka Carcinoma in Situ.
I cry the whole weekend & for the entire week before the procedure because not knowing is the worst. Well, I had another colpo exam right before the LEEP & AGAIN the dr. says, "hmm, <sigh>, we really need to keep a close eye on this one area (endocervical canal). I'll have to do a couple of passes (top hat procedure)". This in effect was 'like' a cone biopsy except done with LEEP due to the size & depth of the cervix taken out.
Well, I lived through it. Still cramping really bad, lots of watery discharge, weird smell, but taking it one day at a time. Here is what has me concerned. He said he thinks there still may be some residual left! So what the heck does that mean?? Anyone else have deep LEEPs done with more than one pass at one time? He used the largest loop size because the lesion was so extensive. He already set up a meeting to discuss biopsy results which should be done in a week, but I don't know what to think. Has anyone ever had ASCUS turn into CINIII/Carcinoma in Situ in less than a month? I am freaked out! I have heard of stories where women had a LEEP only to find out it was invasive cancer. What if I am one of those women? I am 31 with 2 children, but the thought of a hysterectomy still scares me. Of course I'd rather have a hysterectomy if that means I'd live to see my girls grow up, kwim? Gosh, I can't wait for this nightmare to be over. Waiting for results is the WORST!
Hi Kitkat! I hope you've been able to do something relaxing after all of this! That is most important! First of all, let me urge you to see a gynecological oncologist if you aren't already. They are the experts in this area with 3 additional years of training compared to regular gyns. They can make the best decisions and recommendations when treatment involves cancer.
To answer 2 of your questions and try to make this a short story, my Pap and a later colpo both came back adenocarcinoma in situ in November. In December, I had my first cone which came back stage 1a1 cancer. Mine "jumped" as well in a short amount of time. What you have to keep in mind is that the Pap is ONLY a screening tool. It is not meant to diagnose anything. That is why doctors do procedures like LEEPS and cones, not only to rid our bodies of the abnormal cells but also to diagnose us accurately. After my first cone, my doctor didn't get clear enough margins, so after some debate about hysterectomy, we decided to another cone. I am only 26, married less than 2 years at the time, and do not have any children. We opted for the cone simple to preserve my fertility. If we had already had children, I would have had the hyst. Luckily, my second cone (as well as 25 pelvic lymph nodes) came back normal.
I know the waiting IS the worst part. Even if it's not the news you want, you knowing something will help. Post again if you would like anymore info.
Good luck and try to pamper yourself! Stress doesn't help this situation! Your body needs you!
Meg, 26, 1a1 cervical adenocarcinoma, cone 12/12/05, 2nd cone/pelvic lymphadenectomy 3/1/06, NED
Thanks Sporty! You are RIGHT, of course! My little sister had the LEEP done at 20 or 21, but when we compared our experiences, mine seemed a tad bit more extensive. Better me than her, especially since she doesn't have children. My BIL is also an OB/GYN & he said the chances of the biopsies coming back worse are so small that isn't worth losing sleep over. Normally, that would comfort me, but after seeing how things seem to be getting 'worse' instead of better, I can't help but feel tense. My husband will be gone for schooling so I will get the results by myself. I'm sure it will all be fine in the end & of course I can always look to my children to give me strength.
I think I WILL get that massage you are talking about. I still have a gift certificate given to me for my 31st bday back in January & STILL haven't found time to use it. Guess now would be a good time. Thanks for writing back to me. I will pray for your continued good health. Stay strong & good luck with adding on to your family!
kitkat - I wanted to respond to your message earlier but didn't get a chance. Sporty gave you some great advice, and while there are a few of us out there that got a surprise dx of invasive cancer out there, the odds are in your favor.
Now, I'm going to speak from my personal experience. Please please please consider taking someone to your appointment with you! Ask for your reports, ask for a thorough discussion, ask for a referral to a gyn-onc. You want to have an extra set of ears in the room with you regardless of the results. I was not given the benefit of an appointment, my gyn instead chose to inform me by telephone, so I can tell already that your gyn is being a bit more sensitive to his patient! Get that massage, perhaps even the morning of your appointment if you can.
I will keep you in my thoughts. Keep yourself busy, I hope your appointment is soon and then you can get your answers and go from there.
Karen, I will probably have to go to the appt. alone, unfortunately. My friends all work & I couldn't possibly see myself asking them to take time off to go with me. Dh is military & will be in VA for 2-3 weeks (we live in NC). I am bummed that my husband can't go with me, but he really can't get out of training. He is set to deploy again really soon so I'd rather he be prepared for that.
Anyway, as far as questions go, can you guys please help me come up with a list? And regarding a gyn/onc...what should I expect after seeing him? The nearest gyn/onc is an hr. away but I am willing to see one just to ensure my health is in good hands. I have Tricare Standard, so I can pick & choose my drs., thank goodness!
I really hope I am worrying over nothing. I really just want to put all this behind me. My youngest has some medical issues (life-threatening food/latex allergies, asthma, eczema, & GERD). Dh really doesn't know much about how to take care of her. I tried to let him do it all by himself this past weekend & he was LOST. He didn't know what she was/wasn't allergic to, so he didn't know what to feed her & she also has about 8-10 medications she takes on a daily basis & he didn't know which ones were hers, when to take them, & how much. Her asthma was also flaring & dh didn't know what to do or which inhaler to use. It definitely was an eye opener! As far as bills, grocery shopping, etc., I do that all & have been doing all that for almost as long as we've been married. We just celebrated our 11th wedding anniversary on March 14th!
I know I shouldn't think of the worst, but things would not run smoothly if I got more bad news. Plus, dh probably wouldn't be here to help. Wow, thinking about the what-ifs is overwhelming. I'll try to think more positive...thanks for listening you guys! I think I just needed to get all the negative thoughts out of my system. Geez, I need to be more upbeat about all this.
That is the most important part! Get those negative thoughts away! Stop asking yourself the what-ifs! I did that to my gyn-on at my last appt and he looked at me and lovingly (he's 40 years my senior) said, "Meg, you could drive yourself crazy with all these what-if questions. We'll cross that bridge when and IF we come to it. Right now concentrate on making a baby!" Or in your case, concentrate on staying healthy, helping your family, etc.! I know it's hard.
I do think it's worth the hour drive to see a gyn-onc. I am so happy that I did. And just thank God that you have Standard and not Prime. Your situation could always be worse. BTW, my DH was stationed in NC several years ago and now we live in VA (he's out now on disability). What a coincidence!
Take care and keep asking questions!
Meg, 26, 1a1 cervical adenocarcinoma, cone 12/12/05, 2nd cone/pelvic lymphadenectomy 3/1/06, NED
What a small world! Sorry to hear about your dh having to get out. That had to be tough! Well, you seem to have such a strong, positive spirit, that I know the both of you can tackle anything that comes your way. I think I will do something crazy & paint my daughter's room, lol! I bought the paint last year when dh was deployed & never actually did anything. It was one of those impulse buying things for Memorial Day.
Well, thank you so much for taking time out of your day to talk with me. It really helps to talk to someone who has been there, done that & is also doing ok, today. You take care of yourself & happy baby-making! You are such a wonderful person.
Please don't think of the worst. This cervical cancer can be cured and at this point you don't have cancer. What you are doing is perfect. Go to all of you appointments and take care of yourself. Your doctor will do whatever procedures he needs to get rid of the bad cells and you will just have to follow up with doctors orders. You will be just fine. So many women have this.
I jumped from CIN I to CIN II in less then a month. I know that you are at Carcinoma situ but just wanted to let you know that mine progressed rather quickly. I got a coplo with CIN I. I kept going back to repap and it kept saying CIN I, ASCUS so my doctor recommended a LEEP with a colpo about two weeks before the Leep. The colpo was at CIN II and it had only been a couple weeks prior that my pap said CIN I. I had my LEEP back in March of 2005. I had an ASCUS pap three months later and then a normal pap three months after that. Well my last pap in 01/2006 was CIN I. So it is like a roller coaster but you just have to listen to your doctor and do what he says. If you need to get second opinions do it. Stay in control of everything.
If the doctor talks about things you don't understand tell him to explain it to you. Ask for copies of your records if you want to read them yourself.
Tell him to explain everything to you.
kitkat, I sure wish you had someone to go to the appointment with you. It makes things a lot easier in the long run, because you are able to get another person's perspective, and sometimes that person can give you the reassurance you need later down the road when you are feeling vulnerable. Having said that, i understand what it is like to not have anyone you feel comfortable asking, and I also understand not having hubby around to support you. My hubby was gone five days after my colpo and I didn't see him again for about two months (he works away). We have two little ones, so i've been there, done that and you will get on no matter what the results say, because you MUST. Again, i'll restate that the odds are certainly in your favor that this is still pre-cancerous and very treatable. Even if it has progressed to early stage 1a1 like mine or sporty's, you still have options available to you. Another cone is definately possible if it is necessary.
Questions you might want to ask include getting some detailed information about the follow up process. Ask if you will be having a colpo at your first follow up appointment. Ask if the doctor will do an endocervical curettage (ECC) at your follow up (basically tests the cells in the cervical canal). Ask what kind of schedule you will have for follow up (this varies by doctor). Have faith in your doctor, but also have a healthy dose of skepticism, meaning, do not hesitate to question your doctor if something does not seem right to you or if you are uncomfortable with what you are being told. Be honest with your doctor, if you are worried, don't cover it up and pretend you are okay. Communication is so important.
I hope you are painting that room I spent ALOT of time painting my house these last two years LOL. Thursday will be here before you know it, and you will have some answers. Once you have the answers, you get a plan and then you get control. Hope this helps
Thanks for the words of wisdom tpagm. I hate that you are still going through this wonderful rollercoaster with me. Wish I knew when it would all be over, but hey, like you said, it's not cancer, so I should be jumping up for joy! Anyway, I wish you the best of health. Hopefully, you won't be going through multiple colpos/biopsies for the rest of your life. I seriously can't see myself going through all that, but I guess at a certain point you get used to it? Well, I can't wait for Thursday to roll around & if I don't hear from them before then, I am assuming I will hear good results! If it were worse, I'm sure they'd call me before then, so as long as I don't get a dreaded phone call before we are to meet, I will say I am all good! Take care & thanks for the pep talk!
Hey Karen, I must have missed your post! Anyway, I do see your point about getting another perspective. That is certainly true & I do wish I had some friends & family close by, but they are all too far away or too busy with their own lives. I think writing about all this on the board & putting down all my fears has been therapeutic! I really didn't feel like I could talk to close friends or family because I kept getting dismissed. All I wanted was to be heard & also have someone validate my fears w/o making me feel like I was overreacting or telling me that it was probably 'nothing'. I have been hearing it's probably 'nothing' for the past month & for some reason my results get worse & worse. I really do think the stress did make my results come back worse. How else could they jump that fast? Even with the visual at my colpo, my dr. at the most it was only CINI or CINII. Maybe all this is just happening too fast for me to absorb...but in a way that is good because that means it will be over faster, too! Well, if I hear anything, I will keep all you lovely ladies posted. Thanks for being a friend. Off to put the kids to bed!
Oh, just wanted to add, that the list of questions you posted are excellent! I am going to print those out & keep them handy for my appt. Thank you for helping me!
Ok, adding one last thing, LOL--talk about jello brain! Anyway, I did have an ECC done at my last colp & my dr. said that the cells were creeping up my cervix, hence the "we need to take care of this immediately" talk & the deep coning. Just wondering how often they do ECCs...Has it been your experience that this is done at every single colpo? That just about killed me AFTER the procedure due to the cramping. Of course it might have been the NuvaRing bumping into it, but still, I am going to dread another one of those!
Yikes, kitkat you are giving me a flashback to what I was like almost two years ago! Take comfort in the fact that two years later, I am a-ok, and quite normal LOL It sucks having little to no support around, phone calls just don't cut it, do they? And my family tends to have coping mechanisms called "denial", so I understand how you feel about the comments you are getting.
The ECC...I did not have one until my first follow up appointment after my LEEP. I wish he would have done one at the first colpo appointment, but can't go back and change things. I had a colpo and ecc done at my second follow up appointment as well. The ECC is a little better way to monitor possible changes in the canal after a LEEP or cone, from what I've read. Best to ask your doctor that question
I'm glad you are feeling a bit comforted and a little less alone with this. Just know there are gals out there who know how you are feeling and understand the confusion and vulnerability that comes with waiting for results. Just give a shout out when you need us
You are very right the waiting is the worst. I had my first pap last June, they told me it came back abnormal and that I would need to have a colposcopy done and maybe a biopsy, but they didn't think the biopsy would be necessary. It was they did 3 biopsies but told me they didn't think I would need anything further just follow up paps every 4 months for about a year. The results came back and they told me I would need cryosurgery done, to remove the precancerous cells I had moderate and severe dysphasia. I had the cryosurgery done in August. I went back in January for my follow up pap which once again came back abnormal. Went back last month for more biopsies and my doctor told me this time it looks worse but he can't say whether or not it is cancerous or if the dysphasia is just worse. I am 21 and have no children, my grandmother died from cervical cancer about 10 years ago and my mom had to have a hysterectomy in 97' because of cervical cancer. This waiting game is killing me. I go in tomorrow for my results 3 weeks later. Part of me can't wait to get it over with but another part just doesn't even want to show up because I am so afraid of what the results might be. I'll keep you in my prayers!
Oh Beki, I am so sorry you are having to go through all this & at such a young age! Gosh all the ups & downs really can stress you out! You are about my younger sister's age & she was first diagnosed as CINIII at 19 yrs. of age at her very first pap. Talk about traumatized! Like you, she would still like to have children & she is 22 so still has her whole life ahead of her. I can feel your worry through that post. How awful that you have to wait 3 weeks! Goodness, I'm glad I only have to wait a week!
As of now, I am having horrible stretching/tugging pains & pinching pains in my cervix. It was getting me concerned since it has already been 4 days post LEEP & I am still taking 800mg Motrin which barely makes the pain go away. I had called my dr. about all the stretching & pinching sensations & he had his nurse call me back. They said that due to the extensiveness of the tissue taken out (double pass & largest loop), that it was normal to feel those pains for another week! I am also thinking that the tenaculum they used has something to do with all that. Maybe moving it around caused it to pull on the muscles holding the uterus? I don't know, just guessing...
Anyway, today was my first day back at work & I ended up leaving 10 minutes early. Maybe I was sitting too long or something, but my whole lower back hurts (it always does anyway, but I really feel it now) & I have sciatic pain behind my right leg. As for the pinching sensations on my cervix they said it is most likely due to a scab forming which may be rubbing whenever I walk.
Oh well, I'm still glad I had the LEEP done, but now part of me wonders if they should have just done a cold-knife biopsy instead. They took out such a large chunk! I think I wouldn't have believed it if I hadn't seen it with my own eyes! Maybe I could have only had one procedure done if they had went ahead with the cold-knife biopsy, especially since my dr. highly suspects there is still some residual left.
Ok, enough about that! I hope these weeks go by so you can go ahead & get on with your life. It is very hard to be happy knowing that something is wrong with you. I wish you all the best & all my positive thoughts & prayers! Take care! Keep your chin up...remember technology nowadays is WAY better than your grandmother's & even your mother's time!
I went this morning for my results and the DR told me the biopsies came back better then the pap did?? He said that he assumes he biopsied the wrong spots as he asked another doctor to look at the pap to make sure it was moderate and severe dysphasia. The doctor agreed that the pap did show moderate and severe dysphasia. He is said it is one in a million that this got better on it's own so he now wants to do LEEP in two to three weeks. Of course my first question was will this hurt my chances of carrying children later? He said with just having this done once it isn't likely that it will hurt my pregnancies later. I am so afraid of the pain though after reading your post. He said I should take some Motrin before I come and they would put a numbing agent on my cervix before they start but I am really scared. Thanks for your kind words and I hope everything goes well Good Luck and I hope you are feeling better!!