Hi, I just had an abnormal pap smear, and the nurse wanted to schedule me for a colposcopy in July. Nope, too long to wait and worry about it, as I had thyroid cancer 1 1/2 years ago....I am usually over on that board, new here. She was quite sweet, and because I was upset, talked to my doc, who said he would see me next wed. before pts, but not right now, because I am on my cycle. Anyway, the HPV part came back negative, but so I am so concerned that it is cancer. I jump right to cancer, since I had my TC. Can't help it yet. She said it was ascus to high. I said HIGH grade and she said they don't know anything yet, but that it DID NOT come back as cancer. Well, I'm thinking not cancer YET, but isn't that what the further testing is for? Because it is suspicious for cancer? I had my last pap 6 months ago, as my doc is very cautious with me, lots of cancer deaths in my family. My mom had breast at 39, then had pancreatic at 59, and died 7 years ago at 60, from the pancreatic. So, 6 months ago pap was fine, now this. Just need some reassurance, or I am going to go nuts. Sorry for being such a baby, but I have been through a lot with my health, and just want some peace, even for a month or two, and I won't bore anyone with the details. Thank you, Lori
Sorry for all the health problems you've had to deal with. You really deserve a break. I don't have time to write much now, but just wanted to let you know that what they'll look for in the colpo is the severity of the dysplasia. Typically, if it's CINII -- CINIII or CIS (moderate to severe), they will do a LEEP or cold knife cone to remove the tissue before it gets worse. If it's just CINI, most doctors choose the "watch and wait" approach to see if it clears up on its own. Since you just had a pap six months ago, I would say that it's very, very unlikely that you have anything worse than dysplasia. However, I'm glad that you rescheduled your colpo for sooner than July! I agree that that's too long to wait.
I'm sorry to hear about your prior problems, and as someone who was recently treated for (successfully!!) early invasive cervical cancer, I can totally relate to not wanting to wait AT ALL and have things checked ASAP
Eliz has already given you good information, and all I would add is that you should also make sure they do an ECC (endocervical curretage) when they do the colposcopy, as that is the only non-surgical way to sample the cells farther up the cervix and make sure there are no glandular changes. Glandular problems are a little harder to find, and this will give the best picture of exactly what's going on. Glandular problems are much less common than squamous cells problems (CIN I, II, III), but are sneaky and need to be ruled out nonetheless. A colposcopy may also involve biopsies, which are really quick and painless and just a very small sampling of tissue is involved (usually about 1mm or less). The ECC is a little pinch for a few seconds, and at least in my case, by the time I realized I was uncomfortable it was over. It sounds much worse than it is, and the whole process is really no big deal at all.
Please check back with us to let us know how you are doing, and feel free to come with all your questions and complaints and worries! This is generally a very responsive board, and quite a few of us check in daily. Also, no one is going to think you are a baby or worrying too much! Especially after what you've been through (as well as your family history), no one can blame you.
Welcome to the board, although I'm sorry for what brought you here.
I guess I am confused, because she did say it "could" end up being nothing, or they have several procedures they do in the office, and/or some cone? procedure. Confusing to me that they " have no idea" what it is at this point, except to reassure me it did not come back as cancer. Could be nothing?? wow. Could be ascus to high? Want to know what it is, which I guess is where the colposcopy comes in. She specifically said they used to classify it as CIN1, 2, 3, but it did not classify it. Whatever, I sure have a bit of reading and educating myself to do. Thanks for your help!~ Lori I really appreciate all of your replies and your advice, esp. concerning the EEC, I will ask about it. Pickle, I am 46 have three teenagers, so I am done with having kiddos!! Thanks for your response. Zoe, bless your heart, I am glad you were successfully treated. I cannot go thru 2 cancers in 1 1/2 years, the TC was enough for me. Glad you are well!! Thank you Elizabeth for your kind words and advice, too. Thank you all so much. I am trying to put it out of my mind....sure. Take care!!
Last edited by Lori123; 06-04-2009 at 08:29 PM.
IWant to know what it is, which I guess is where the colposcopy comes in. She specifically said they used to classify it as CIN1, 2, 3, but it did not classify
That's exactly it Lori. They can't really tell what it is from the pap smear. (Except your results apparently were'nt that bad since your doctor seems to think it's NOT cancer!) At the colposcopy they will do a biopsy and then tell you what CIN level it is. If had to bet, I'd say your pap was ASCUS: the "US" means "undertermined significance," so that's why they are doing the colposcopy.
It could absolutely be nothing! There are lots of false reading on paps. Also, CIN 1 is pretty much "nothing" as well since it mostly goes away on it's own.
The cone prodecure she was talking about is where they remove the bad cells from your cervix (in a cone-shaped piece). There are 2 ways to do it. First is a LEEP where they use an electrified wire. It cauterizes as it cuts, so it's VERY easy procedure that they do in your doctor's office. It takes like 20 minutes, but the actual LEEP part probably takes only seconds.
The other way to do it is by a cold knife cone, which is usually done in the hospital under general anesthesia. It's a bit bigger of deal, but still not bad.
So wait for the colposcopy (definitely ask for the ECC) and then you'll know the CIN level and if you need treatment.
Thanks Lily, for your reply, I appreciate you claifying some things for me. I am just so SICK of appts, doctors, procedures, etc. I seriously have had it. It has been non stop, since my thyroid cancer. Not even just the cancer, but several other issues, as well. I told my gyn. that he was the last appt. I had to get through, until I can enjoy the summer and have 6 weeks off before all the thyroid cancer follow up, and he said "good, you deserve a break, you have been thru hell this last year, you go and enjoy your summer!" Sure, 10 days later, another phone call...................abnormal pap, blah blah blah. It amazes me that an abnormal pap may mean "nothing" to a very serious situation. She wasn't telling me everything, because I started to cry. She just said it is not cancer, but ascus to high. High? If it was high, how could they possibly schedule someone out 6 weeks? Thank God, I am seeing him next week, and hopefully he can shed some light into this whole thing. I seriously cannot handle another cancer right now, which she said it did not come back as cancer. Yet, after the colposcopy, it could show cancer, or not?? I don't get it. If it FOR SURE is not cancer right NOW, does it mean it won't come back as cancer when he does the colposcopy? Then, I would feel a lot more reassured.......Sorry for the ramble and rant.
Let me ask you this: when was your last pap smear before this one? The chance of having cancer after an abnormal pap is extremely low, and if you've had a normal pap anytime recently it's even lower. Cervical cancer typically moves very slowly! The colposcopy hypothetically could show cancer, but seriously that is such a remote possibility it's not even worth worrying about!!
I'm assuming she meant "high" as in high grade. High grade encompasses both CIN 2 and 3. That's when they'd do the LEEP. Still, it high grade isn't really all that serious. CIN 3 only has about a 25% chance of becoming cancer if left untreated, and about a 0% chance of cancer if treated!!
I know what you mean about doctor's appointments. I have had a really bad cough this week, and I just refuse to go! I had 2 doctor's appointments for others issues. It's just so annoying. I'm realy over going to the doctor!!
Still, you fought thyroid cancer, and comparatively, an abnormal pap is no big deal. I heard a stat once that like 1 in 10 paps comes back abnormal. Not 1 in 10 women have an abnormal pap in their life, but 1 in 10 pap smears is abnormal!!!
Thanks for the reassurance!! I did just have a pap 6 months ago, my doc due to family history does a pap and breast exam on me every 6 months and has for a few years, even well befor my TC. I just love him, he is so careful and thorough with me. So, that is better news, a pap 6 months ago was normal, the HPV is negative. I did not know that the cin3 is easily treated and still not a cancer. Whew! Good to know.
I have another question for you experts...........
I have my period which started on wed. morn. she called with the abnormal results wed, and said I can't be on my period. She scheduled me for wed next week. Well, when I got home tonight there was a message on my recorder that they "may" be able to see me mon. morning if he gets done with a meeting. I am to call at 9am, and be ready if he is back to see him at 9:30, which would be GREAT, except, I will still be on my period! I wonder if she forgot......I would love to get it DONE with, but I also want him to be able to see wht he needs to see....It will be day 5, and I bleed for 7 days, my periods are very heavy, but sometimes, not so heavy by then??? What to do? Do you have to be completely done with your period? because then I won't be able to see him on Mon. Also, do you know how long it takes to get the results? I think she mentioned 5 days? sound right? see, then maybe I would know by next fri.......the sooner the better!! I am feeling so much better about this, and I thank you for helping!! With the 6 month pap, hpv neg. and even if it is high grade, still easily treatable........I can breathe again, I just don't want to hear the c word again! Thanks for your help!! I will also remember to ask for the ECC.
So you had a normal pap AND a negative HPV test 6 months ago!?!?! OMG stop worrying, I'm going to go ahead and diagnose you right now as NOT having cervical cancer!
Honestly, I'd call Monday and say thanks, but you're still on your period. They might say it's okay, but part of the colposcopy involves a visual examination of your cervix, so I'd imagine it would be better to go after your period was over.
I'd say the absolute maximum it would take to get your results would be 2 weeks, but they'll probably have them within a week. Also, after the colposcopy, go ahead and ask the doctor to take a guess at what CIN level he thinks it is. While they really need the pathology to be certain, doctors have a lot of experience looking at lesions! My gyno wrote in my records that her impression was CIN 2 and she was right on. They might say something more vague like "Could be CIN 1 or 2" or "I think it's high grade." But ask the doc's best guess as to what it is right there. They will most likely reassure you that it does NOT look like cancer.
And yeah, CIN 1, 2, and 3 are all precancer! CIN 3 is sometimes called carcinoma in situ which is also referred to as Stage 0 cancer, but don't let that scare you. It's cancer cells, but they aren't invasive. CIN 3 is treated very simply with the LEEP.
Yea!! Lily, I will take your diagnosis!!! The pap was fine 6 months ago, and just had abnormal pap this time, and they automatically checked the HPV due to the abnormal pap, she called it hpv dna testing, and it was fine right NOW. I don't think I have ever had it tested before, just this time, not 6 months ago, so that is good. So, what could it possibly be? She sounded concerned, and he is doing the colposcopy, I thought if it wasn't concerning, he would repeat the pap test, but maybe he is just cautious. Anyway, you are making me feel much better. Although, I have been down this road before, no worry, tiny nodule on thyroid, bloodwork all great, no risk factors, radiologist looked at specimen, said not to worry, looks fine to him, etc. 2 days later, phone call that said you have cancer. I am not trusting anymore, and I am panicky about tests that are abnormal!! I am glad I have been busy to keep my mind off of it, but as soon as I get home, I am right on here, looking for your advice...thank you. I will ask my doc what he thinks it looks like. I will see what they say on Mon. morn about my period, I really would just like to get it over with.
I kinda think you should wait till Wednesday. With you being on your period, it might be kinda hard for them to view any lesions and we don't want that to happen! Of course, the vinegar they use might kinda clean it off, but I don't think you want to take any chances of them not having an accurate view!
I don't want you to be scared by what I'm about to post -- and no offense at all to Lily, as she is probably right and you have nothing to worry about -- but I also don't want someone to read this thread and think hmm, I had a clean pap six months ago so I'm not going to worry about my abnormal one now. We see lots of people come to this board after not following up with paps for a long time, for a variety of reasons, and then "suddenly" they have a problem.
While it's true that a clean pap six months ago and no hpv is a good indicator that you should be fine, you do need to follow up. I had a normal pap in May 2008 (as well as 20+ years of clean paps), and in November 2008 I had my first abnormal one. Long story short, my follow up from that abnormal pap revealed that, at age 39, I had Stage 1a2/1b1 cervical cancer -- which in all likelihood was already present at the time of my "clean" May 2008 pap. Yes, my case is supposedly "rare" and this shouldn't have happened, but it did. I also found out after the fact that most of my paps, including the ones from 2007 and 2008, while technically sufficient to evaluate, contained "scanty cellularity" meaning my ob/gyn didn't really get a good sample. So, between the unreliability of the pap and the not great sample, my problem was missed until I changed doctors and the new guy adequately examined me.
Like I said, I'm not trying to scare you, but as you know, just because something is rare doesn't mean it's not going to happen to somebody. I found that out the hard way. That being said, you are most likely just fine, and there is no need to panic! Eliz is right; you might want to wait a couple extra days so you can have a better exam, although call the doc Monday and ask. Please enjoy the weekend and don't worry, despite my story. Remember, everything turned out just fine for me in the end, with minimal treatment I'm sure you will be just fine!!!
Well im just scared cause i doint really know what hpv is but i do know it can cause cervical cancer .i been crying cause i feel like my life is competely over.Did you have symptoms that you knew of.I was researching about it a little before i go to the gyn on next week.So it true that you body can figh it off
I'm glad Zoe brought this up. For the same reasons (future women who might read this thread), I want to remind people of my situation. It is very rare, but it happened.
I had good paps, annually, for over 25 years. Just over a year ago my doctor did the HPV/dna test at the same time as my pap. The pap came back good (as usual), but the HPV test came back as positive for high risk HPV. Long story short, just a few months after that positive HPV test, I was diagnosed with adenocarcinoma stage Ia1. I had NO symptoms. I was regular with my paps. And still, even after the cancer diagnosis, I still have good paps!
My advice is to have the doctor run the pap AND the HPV/dna test. The pap has an accuracy rate between 40-90%. That is a HUGE range. I believe that accuracy rate is on good samples, that doesn't include the bad, or scanty, samples. The HPV/dna test has an accuracy rate of about 95%. Together, the pap and HPV test have an even higher accuracy rate of detecting cervical cancer.
Lori, I wish you the best of test results. Please let us know how they come back!
I totally agree with Zoe and Pickle! The pap is by no means perfect. It gives many false readings, and it's actually not really good at picking up glandular cell changes. When I wrote my post I thought you meant you had both the pap and the HPV test. The HPV test really helps to rule out glandular changes. I think that's why all of us on this board are advocates for HPV testing even when the pap is normal.
Still, it's definitely worth noting that glandular changes are pretty rare compared to the commom squamous cell changes. And despite the pap's limitations and unreliability, getting regular pap smears decreases you chances of cervical cancer by 99%!! Cervical cancer is usually quite slow moving, and it's highly unlikely you wil keep getting a false normal pap every year (or every 6 months in your case).
You definitely want to do the colposcopy and request the ECC to rule our glandular changes. HOWEVER, I'm completely sticking to my (completely non-medically educated!) diagnosis of no cervical cancer for you!
I want to say first and foremost....Thank you all so very much for your advice and well wishes, what a kind and caring group of ladies on here! Also, I want to say obviously we all have our health issues, and I am so very sorry for everything everyone on here has been through. I pray for health for all of us!
Now, of course, I have a few more questions, I guess I am confused. I hope i can explain my confusion properly. Here goes:
The nurse said I had ascus to high. So, I said HIGH grade? as in thinking cancer. She said this DID NOT show cancer. She said it showed ascus to high. Now, form what I have been trying to read on here, doesn't the "high" refer to HPV HIGH RISK? Or am I way off base, here? I had the pap AND they automaticaly tested the HPV because it came back abnormal, and she said it is good news the HPV was NEGATIVE. Ok, so does "high" refer to risk of it being cancer? or does the ascus- high mean HPV risk....because then it doesn't make sense to me, because the hpv was negative. Am I making sense? I did start to cry a bit in the phone after she said high, so I think she was backing off a bit, not to scare me, but she did state again, that it did not show cancer on the pap. She did say it will usually clearly state probable cancer. You know how when you are upset, you don't hear everything? I did ask her to clarify, and I THINK she said it goes:
So, I don't get it!! I was ascus-high with a negative HPV.
Anyone wanna help me by clarifying some of this.
I am so sorry to keep asking questions, but I just don't get it. I have read a little on here and everyone seems to refer to "high' associated with the HPV.
Thanks again, you are all so wonderful!!!
You are correct.................I did have the pap and HPV test. The nurse said they automatically do the HPV test if the pap is abnormal and it was NEGATIVE. They must just use the pap smear sample and test that, because I knew nothing about it, I didn't have to go back in or anything.
So, It was abnormal pap, negative HPV.
Thank you so much, I would absolutely never skip my colposcopy. I need to know what is going on.