False positives for pap smear results?

Hi all

I had a pap smear 2 weeks ago and the Dr told me she could see ulcers on my cervix. I went back yesterday and she told me I have a possible high grade squaumous intraepithelial lesion. I had an abnormal result a few years back, but all that required was for me to go back for another smear test in 12 months instead of 2 years, and it turned out all clear.

My first thought when the doctor told me was that it's only 'possible', so I won't worry about it until I find out more. But then of course, I came home and hit google and started to scare myself.

Anyway, what I want to ask is:

What are the chances of it being a false positive reading?

Does 'possible' really mean it might not be anything, or does the fact that it actually came up on the test mean that it is actually there?

Are there other reasons a result like that could show up other than having pre-cancerous or cancerous cells?

I'm to be booked in for a colposcopy, but the gyno's receptionist told me that might not be until mid August, and that seems an awfully long time to wait without knowing what's going on.

I'm in the process of looking for work at the moment, and it kinda feels like I have to put that on hold until I find out what's really happening. What's the point of starting a new job if I'm just going to have to take time off a couple or few weeks after starting for all sorts of treatment?

I'm trying not to worry too much, but it's hard. My head is spinning, no matter how much I try to tell it this all could turn out to be nothing at all.

Cheers

Kay

ps ... thanks to April Dawn to directing me here

Hi. Sorry you are dealing with this. If I were you I wouldn't wait until August. I would demand to get in sooner or see another doctor who will see you right away. It is also a very good idea to see a gyn/onc since they are the experts. I had a high grade pap and mine turned out to be cancer. I'm not saying yours is, but time is very important at this point.

s
Lisa

It doesn't sound too likely to be nothing at all if they say possible high grade, but it's true you won't know much until you have more tests. At this point mid Aug is a month away, which can seem like forever. Is there a way to get seen sooner, maybe a waiting list for a cancellation? I agree it's hard to make plans when you have the uncertaincy. I had a different cancer so I don't have info on what your sequence of events might be next, but other ladies on here will know. Do they have GYN oncologists there, or just GYNs? If a GYN oncologist is available, that would be helpful. (You are in Australia, is that correct?). Waiting is the pits, I hope you get in soon. I waited 6 wks for a biopsy-----since I had to have another test first, wait for both, etc---so I know how it can be. Let us know how it goes, we are here to help you through this.

PAP smears have a known high failure rate. False positives and false negatives are common. That is why there is the recent push to test whether you have an active HPV infection. It is a better tool in determining disease progression.

Many factors affect PAP test pathology. Recent sexual relations, yeast infections, douching, etc can cause abnormal results.

With that said, false negatives are much more common than false positives. Many women have disease progression that goes completely unnoticed, which may explain why you had clear PAPs for a few years.

I know waiting a month seems like eternity. I second grayown's suggestion of making sure your doctor's office knows you want to fill any cancellation slots. In the meantime, start researching where the Gyno Onc's are in your area. If the colpo comes back with CINIII or higher you want to get a second opinion from one. Even if you have clear margins from the colp I suggest getting a second opnion from a Gyno Onc.

Good luck, I hope it comes back all clear!

Thanks for the replies

Yes, I'm in Australia. It seems gyn/oncs are not very common here at all. In fact, a search of the yellow pages shows there are none in my state at all! I'm in a rural area and the closest gyn to me is an hour and a half drive away. If I need to go to Perth, it's about 3 hours away. To get to a gyn/onc, i'm looking at a 4 hour flight and probably around $800 in air fares :0

I'll definitely ask to be put on the cancellation list when I finally find out when my appointment is. I rang the gyn office when I got home from the gp and they said when they get the referral from my gp, the appointment nurse would schedule the appointment, give it to the gyn for approval, then post it out to me. So not only do I have to wait for the appointment itself, I have to wait to even find out when it might be! I've never been good at waiting, and this is probably the hardest thing I've ever had to wait on.

I'm having to use the public health care system. Every couple of years there are huge issues made about wait times for treatment (usually around election time), but nothing much ever seems to get done about it. I simply don't have the money to go private, so have no choice but to wait on the public system.

I spoke to my sister on the phone last night and she said she has a friend who has had 3 high grade results. Each time, this woman has had the offending cells burnt out under general anaesthetic (sp?) and suffered a lot of pain and bleeding, especially with the 1st and 3rd procedures. That scares me, as I tend to be a bit of a bleeder and have had to have intervention with minor things I've had done before to control bleeding.

The gp did say something about HPV, but there's nothing about it on the report she gave me. I've had HSV for probably about 25 years, and with the wild lifestyle I led when I was younger, I wouldn't be at all surprised if I do carry HPV. It's just never come up in any tests before.

There are so many things worrying me. Even just the colposcopy. What if the gyn wants to do a biopsy or something on the spot? I have a really long drive home if I'm in pain and bleeding from having bits cut out of me. I live on my own with my 2 cats. I only moved here about 6 months ago and know hardly anyone. If I have to have more invasive stuff done and be in hospital even over night, who will look after my cats? Who will look after me if I'm incapacitated by surgery or whatever? I feel very alone. My sister and friends are all back where I used to live, which is 3 hours drive away. It's not even really the idea of finding out I have cancer that scares me so much. I know that isn't necessarily a death sentence, as many of the good ladies on here are proof of. It's the logistics of things that's playing on my mind.

On a logical level, it seems so silly to worry about all these "what if" things, but that doesn't stop my head from doing all sorts of sommersaults and gymnastics about it all. An active imagination can be a real curse :S

Checking out peoples' stories on here and seeing that they have made it through much, much worse scenarios than I'm facing is comforting and reassuring. It doesn't stop me worrying, but I can argue with my head and tell it others have survived much worse, and I can survive this.

It's great to know there are people here to support and give advice. Thank you.

Kay

I sympathise on the logistics. But maybe those can be worked out. Here there are petsitters for hire, and also automatic feeders and waterers. And here you can board cats for a few days if it came to that. Beyond that, it probably is best to wait and see if you even need to make plans. Maybe plans for the ride home would be good. Perhaps ladies who have had the procedure can help on here with feedback on what to expect. As to GYN oncs----I think you have to deal with the country and system you live in and the funds you have, and adapt the urging to go to a GYN onc to your situation. In my city there are at least a dozen GYN oncs. So it's easy for me to say, go see one. But for you, it seems the norm is for GYNs to deal with cancers, and it's hard to even get to see one of them. So you have to work with what you've got and modify the advice from your US sisters to match the resources there. I know some will disagree with me, but that's my point of view. If you had a rare or advanced cancer I'd say, GYN onc, for sure, but in your situation I don't know that it's warranted, at least not yet. Not at that degree of sacrifice, at this early point. You have enough what ifs to deal with right now. If you do need more treatment maybe we can help you plan logistics, but first things first-----diagnostics first. I hope you can get in soon. I'm in a "managed care" health plan so it took 6 wks for all my tests, I know how it is to wait.

I had a false positive in the past. Having said that..I would not take any chances...and get in for further testing asap!

thanks again for the replies

the aussie system does have it's faults, but i know we are a lot better off than some countries. i guess i just have to try and trust that the system will work for me. and you're right greyown, i do just have to work with what is available and make the best of it.

i'm going to wait for today's mail, and if there's no letter from the gyn's office, i'm going to ring them and find out what's going on. i feel a need to take a little bit of control of the situation.

twitch it's good to hear that you got a false positive, cos it means it does happen, so i can hope that maybe that will be my outcome.

*hugz*

so i called the gyno's office yesterday afternoon to see if my appointment has been scheduled for the colposcopy yet. they said it had been tentatively booked for august 3rd, but was still in with the gyno for approval. i asked to be put on the cancellation list, which was fine and i was told depending on what the gyno decides, i might hear from them sooner.

part of me wants a call to say you need to come in next week, cos that'll mean at least that part of things is over quicker. part of me is dreading a call to say you need to come in next week, cos that'll mean the gyno has decided things are quite dire and need immediate attention.

i had a sudden thought this morning. i don't have a single pair of pyjamas that fit me. the last time i bought pyjamas was when i had to go to hospital for oral surgery years ago and was about 20kg heavier than i am now. my immediate reaction was "omg, i have to go shopping. what if i have to go to hospital and i have no pjs?" but of course, that is putting the cart so ahead of the horse it's not funny. deep breaths. calm down. i think i need to take a leaf out of my cat's book and just drape myself over the back of the lounge and chill out for a while ... lol. silly brain running off like that!

i am going shopping today, but not for pjs. i sleep with earplugs in cos i'm a very light sleeper. since i've moved here to the country, i haven't been able to find any that i like. i'm going to go for a drive, hitting bigger and bigger towns til i find a pharmacy that has earplugs that i like. it will get me out of the house for a while and pass the time. time seems to be my biggest enemy right now, apart from my runaway brain.

kay, I am in Australia too.. NSW though.
there is a terrific group in Australia for GYN cancers - GAIN I think it will come up as if searched. message me if you wish, and I will tell you about it. they may be able to suggest some GYN/ONC over your way. It was started quite a few years ago by a woman, I think her name is Kathleen Mazella [spelling may be off with the name!]
much love xo