Hello again
To recap.... my story so far
MAR 2009: ASCUS smear with NEGATIVE HPV DNA
SEP 2009: HGSIL
SEP 2009: COLPOSCOPY
OCT 2009: COLPOSCOPY results all NEGATIVE AND NORMAL
Advised to get follow up smear in 4-6 months and that the SEP smear was most likely a false positive.
I am puzzled, worried and relieved at the same time. Somewhere here there is either a false positive or two false negatives. Or is the truth somehwere in the middle?
Dear fellow sisters .. please let me know your opinions, can I safely wait for follow up in 4-6 months or would you do a conisation asap to be extra sure something has not been missed.
Thank you so much in advance
I have learnt so much from you all already. Perhaps there are more questions I need to ask or maybe just trust that the diagnostics more than the screenings
Yours faithfully
Lilly
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Difference between colposcopy results and smear
- By Lilly71
- Posted October 7, 2009 at 1:16 pm · 11 replies
- In Early detection and testing
- Shared with the public
11 replies
- Oldest first
- Newest first
- By flowershoplady
- Posted October 7, 2009 at 3:41 pm
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lilly, i'm sorry you're having conflicting test results....this is not an easy situation to deal with. some doctors would recommend acting upon the hgsil pap assuming that there's a a problem somewhere and that they're missing it with the colposcopy and biopsies. did they also do an ecc and did that come out normal too? as you probably know, false positives are unusual with paps, while false negatives occur at a fairly high rate. did they do another hpv test since last march? and, did they have a second pathologist review all your slides and tests? you may also want to talk with a gynecologic oncologist for his/her opinion. there's no 'right' answer here....but you need to feel good about your next steps, whether it's waiting for additional testing or going ahead and doing a surgery which may or may not be needed. i don't know if any of this helped....but i hope it did. let us know how you're doing!
- By Lilly71
- Posted October 7, 2009 at 3:54 pm
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Hi Flowershoplady
Thank you for your opinion.
I just wonder what is most "likely" a false positive smear test or false positive biopsies?
Both my smear showing HGSIL and my COL biopsies were taken in same cycle.
Yes GYN took ECC which came back normal too.
No, no new HPV were taken. I would love one to be done, but they do not. I will talk with my GYN about this next week, as I had been thinking the same too.
I have submitted my dilemma for a second opinion and will also hear what they say
Sincerely
Lilly
- By Lilly71
- Posted October 7, 2009 at 3:57 pm
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Hi again
Sorry I mean to write
what is most likely ... a false positive smear or false negative biopsies/ECC ?
Lilly
- By flowershoplady
- Posted October 7, 2009 at 4:10 pm
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false negatives are more likely than false positives....there's a higher likelihood of something being missed than with something being found that isn't really there, although it could have been misinterpreted. in other words, a biopsy could miss the area with the abnormality. a false positive means that a pathologist sees dysplasia and is wrong - that's why there's often secondary pathology reviews in your type of situation where there are conflicting test results.
- By Lilly71
- Posted October 8, 2009 at 3:26 am
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Hi
My GYN told me there is a big difference between the tests. A screening is not a diagnostic. It has a high sensitivity (to catch all) but a lower specificity (not sure what it catches) than the diagnostics (biospsies etc). When he took a biopsi from me he said that one biosi ha a thousand more cells than a smear.
Also the HPV DNA PCR is also a different test. Not sure how, but I do get the feeling that the PCR method is more reliable than the smear screening.
In all, I have been thinking and hoping that I am right to believe that my HPV PCR which was negative in combination with negative biospies and ECC must weigh higher than a positive smear.
Please do comment
Lilly
- By Lilly71
- Posted October 8, 2009 at 6:23 am
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Me again,
Correcting my self again. Thsi is difficult. I do not know if the GYN took a ECC. He took a scrape/biopsi high up (very high) I think it is just a biopsi from high in the cervical canal.
I am exhaused in keeping track. I will ask my GYN again next week when he is back from hols.
Lilly
- By buzymom
- Posted October 8, 2009 at 2:55 pm
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Hi Lilly,
I have gone through the same thing and it is exhausting and emotionally draining! Sorry you have the same issues. I had a ThinPrep Pap in March 2009: came back ASC-H. Then I had a colposcopy in May 2009 that read: atypical glandular cells but inadequate sample, so repeat colposcopy. So in June 2009, the colposcopy, three biopsies, a ECC, and an endometrial biopsy were completed. All negative; all normal.
My doctor recommended a cone biopsy and D&C with hysterscopy. Before that, I went for a second opinion and a different doctor/lab repeated the pap with a liquid based prep. It was normal. I go back in 4 months for another. My doctor said it could have been lab error, misread by the machine/pathologist (the liquid prep paps have some false positives sometimes in women who are certain ages), or I could have repaired any abnormal cells. At any rate, do your follow-up, but try not to worry! I know that is easier said than done. If you are too worried, ask if you can come back sooner or ask them to repeat the colposcopy. A second opinion never hurts either. Take care,
Angela
- By Lilly71
- Posted October 8, 2009 at 3:14 pm
- Report post
Hi Angela
Thank you for your reply. I hope and think we will both be fine. When I got the results my GYN kept teling me that the samples he took represents a thousand more (in quantity and quality) than what is taken in a smear.
So this it what I am trying to think about.
It is like fighting wind mills. All in all I am okay now, but I know I will dread the next exam.
Thank you again so much for your comforting reply
Lilly
- By pkfoxx
- Posted October 8, 2009 at 5:34 pm
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Hello Lilly,
I too have had 2 positives (Paps) and 2 negatives (colpos). My gyne said it is not uncommon for colposcopy to come back normal after abnormal Pap. Looking at your history (and mine below) indicates she is right. My history:
AUG 2008: ASC-H Pap with POSITIVE HPV
SEP 2008: COLPO 3 biopsies, all negative
FEB 2009: COLPO 3 biopsies, all negative
AUG 2009: LSIL Pap
Gyne advised COLPO but I declined.
Instead, APPT to Re-Pap 12/09 (4-mo wait)
I saw no point doing COLPO since previous 2 showed nothing; gyne agreed, but not until I questioned it. I believe I had abnormal cells the whole time between 8/08 and 8/09, the colpos just didn't find any. Doctor problem? lab problem? Both? I do know my lab does not have 2nd pathologist look when there are conflicting test results (clinical pathology labs), although I imagine they would for an add'l charge.
As of now, I don't plan to spend $$ on COLPO again. I will Pap every 4 months (much cheaper and ALL cells are sampled). If I have a HSIL Pap, I'll probably do LEEP or Cone (again, skip colpo).
Anyway, back to you. I agree with flowershoplady that false positive Pap is rare. My lab doesn't even run an HPV test if Pap is HSIL because if you have HSIL you have HPV. I would get another HPV test, but I would do it in conjunction with your next Pap. So I would do nothing for now. 3 months after last Pap (don't wait six with an HSIL Pap), I would schedule another Pap and ask doctor to order an HPV test regardless of Pap outcome. If that Pap is HSIL and HPV test still negative, Pap is likely wrong.
Lilly, do you have the book What Your Doctor May Not Tell You About HPV and Abnormal Pap Smears by Joel Palefsky? If not, get it right away and start reading. Many in this support community swear by it; I am one of them. Outstanding educational tool.
- By flowershoplady
- Posted October 8, 2009 at 6:06 pm
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lilly, right, the pap is only considered a screening test and the biopsies are better in their accuracy. but....the doctor can still take a biopsy from an area that doesn't accurately capture the abnormality. and, yes, the hpv test is also considered quite accurate. i don't think this conflicts with my previous post. i know it's all confusing and frustrating when the tests don't correlate, but please try not to let this overwhelm you....stress isn't good for you, and it's just plain awful to feel such anxiety. do you trust your doctor? do you feel a need for a second opinion, even if you do trust him? listen to your inner voices.
- By weebles
- Posted November 18, 2009 at 9:05 pm
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I had almost the very same series of events this past month so it's interesting to hear other's view points. I'm at a loss as to what to do now. But I will get a second opinion.
Sept HGSIL pap(had HGSIL pap in 2003, colposcopy showed HGSIL, had LEEP, all normal paps after..until this one)
Nov colposcopy...no abnormal tissue seen, doctor decided to take tissue from inside the cervical canal "just in case" since he already had me there.
Nurse called me today to say doctor wants to schedule me for LEEP anyway. He says the infected tissue may be in an area that he didn't get to with the scraping.
The last 5-6 weeks before the colposcopy I was seeing my Naturopathic doctor and she had me taking supplements specifically for my problem. Could these supplements have already done their job well? Or could the pap have "disrupted" the dysplastic cells enough for my body's immune system to "eat them up".
The first pap was done at my local health dept. since I am lacking funds. I am making an appt with another OB/GYN that my friend's trust and taking all my records from the previous doctor. If he suggests I have another pap or the LEEP I will do it.
Should I be in a hurry to have the LEEP that they suggested? I've had it before and it's nothing bad, but I don't see the
Thanks in advance. Just a little confused with this outcome.
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