[Question #1362] Cervical cancer fears-Dr. handsfield please

46 months ago
Hello Dr.
 I had LSIL and high-risk HPV when I was 26-28 (I'm now 36)--last I was tested for it it had been there almost 2 years, so it seems to have been more persistent than is typical. The LSIL was confirmed to be CIN1 via biopsy on two occasions, and then a third pap showed Ascus and the gyn said she wanted to wait before another colpo since it seemed things were "getting better." I then became pregnant, switched practices, and never gave the new OB my records. I haven't been tested for HPV since and had a normal pap in 2009 and 2012. It's been almost 4.5 years now since I've been to a gyn and I'm terrified that those negative paps were erroneous (I had no idea paps came with such a high false negative rate until my recent googling, and stupidly thought I was in the clear when finally the one was normal in 2009). Can you give me some realistic risk that I have cervical cancer or even CIN2 or 3? I have an appt next week and am so embarrassed that I haven't been in so long and also so afraid. I found a study suggesting that two clear paps following CIN1 can still mean ICC within 5 years in a small number of patients (I think maybe 3 out of 5,000).

As a side question: why do we need to do paps at all any more? If you test negative for HPV can you still get cancer? And what do you think of the at-home HPV tests? 

Thanks so much.
H. Hunter Handsfield, MD
H. Hunter Handsfield, MD
46 months ago
Welcome to the forum. Thanks for your question.

I really don't think you need to worry. To be honest, we STD specialists do not frequently manage women with abnormal pap smears; I'll address your concerns, but please confirm everything with your new ObG physician, who probably is more expert than I am (or Dr. Hook would be). But the main thing is that the concept of progression of abnormal paps is usually not what happens:  it is rare that LSIL (low grade intraepithelial lesion) progresses to HSIL (high grade), or that CIN I progresses to II/III. If HPV leads to these more advanced forms of dysplasia, usually it does so immediately.  In other words, your LSIL/CIN I pap reasults probably reflected a low risk HPV infection with low potential to progress to higher grade dysplasia or to cancer.

Second, pap smears are not perfect, and sometimes can miss cellular abnormalities of this sort. However, they usually do not; and with two negative results (ASCUS really doesn't count as abnormal) plus passage of time, almost certainly your infection has cleared entirely. In any case, even HSIL or CIN II/III paps usually do not progress to cancer, but clear up with time -- even if not treated. (Treatment by laser cautery etc almost always is recommended -- better safe than sorry -- but in fact most women would do fine without it, with eventual return of their pap smears to normal.) And when HSIL/CIN II/III progresses to cancer, it typically takes 5-20 years to do so. I could not have quoted the rate you found, progressing to invasiive cervical carcinoma (ICC) in 3 of 5,000 women over 5 years, but I think you'll agree that's an extremely low rate. And even these mostly would be prevented by serial pap smears.

So probably you are home free. I imagine your new physician will recommend another pap smear, or maybe annual ones for a few years. But I anticipate her advice will be very reassuring.

As for the future of pap smears, you have put your finger on an active area of current research and evolving recommendations. It would not be surprising to see formal recommendations in the future emphasize HPV tesitng alone, without the microscopic/pathologic analysis that is the basis of pap smears per se. There are occasional non-HPV abnormalities detected by pap, but maybe not sufficiently frequent to warrant the relatively high cost of traditional microscopic analysis. We'll have to wait and see what the various organizations (CDC, ACOG, society of clinical pathologists, etc) come up with in the future. For now, I recommend following official pap smear guidance.

So follow your doctor's advice, which I expect to be equally reassuring as I have just tried to convey. You might even consider printing out this thread as a framework for discussion:  I would love to have feedback if your doctor disagrees with anything I've said.

I hope this has been helpful. Let me know if anything isn't clear--  HHH, MD


---
46 months ago
Thanks so much, Dr. Handsfield! I have a history of various anxiety disorders, and so I can never gauge exactly how rational my perceived risk is--while rationally I can tell myself that the odds of my having a tumor in my breast right now are higher than the odds that I have a tumor in my cervix (even in light of my history), when I go down a rabbit hole of scary thoughts, rationality flies out the window. 

Everything you say makes sense, but just to clarify my history since I think it wasn't clear--I had two abnormal paps with HPV positives. Each was followed by a colposcopy with biopsy that I was told were "low grade changes." (I am assuming this was CIN1). Then the third pap I am surmising was ASCUS because I remember the doc saying "it's still slightly abnormal, but less than before so I'm going to hold off on a third colpop"--since at that point I had been having the biopsies every 6 months. This was in 2008. I then had two paps (without HPV testing) that I was just told were normal--in 2009 and 2012--with a new doctor who I guess didn't have my history? I am having a hard time recalling exactly since at the time I wasn't fixated on any of this being a big deal as I was repeatedly reassured it wasn't. When looking at the guidelines, I should have definitely had another HPV test and been followed up with paps more often. So I think the reason this is stressing me out is that never in my life have I gone almost years without a pap, and therefore if I have cancer and die and am not here for my two young children it will be entirely my own fault for being so stupid and letting this go for so long. The study I am referring to is this, btw: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3616505/

I am interested in the idea that HPV doesn't go from CIN1 to CIn2 and further over many years but rather progresses quickly if at all. My understanding was that at least something like 15% of CIN1 kept progressing eventually. And one thing that has kept me concerned is that I know mine was still there 18 months after the first test when I kept reading it should have cleared by then. And because I never got confirmation of being HPV negative, I continue to worry. Thanks again for your reassurances. Nothing to do but wait for the test (argh and then the results!). 
H. Hunter Handsfield, MD
H. Hunter Handsfield, MD
46 months ago
I really do think you are over-analyzing all this. The additional details of your history don't change my opinion or advice. It is extraordinarily rare, if ever, that someone with your history (and your obvious intent to follow medical follow-up advice very closely) ever gets cervical cancer, and even rarer that she dies of it. That's out of tens of thousands (if not hundreds of thousands) of women each year found to have CIN I, including the ones who, unlike you, are not treated, don't follow their doctors' advice, and have no follow-up at all.

Your 15% figure of CIN 1 progressing sounds about right and I didn't say it can't happen. (I guess it depends on how to interpret my use of "rare". 15% for sure qualifieds as uncommon, if not rare.)

As I said above, I expect your doctor to agree with all this. I'll point out that each question includes two follow-up comments and replies. Perhaps it would be best to hold off on your last one until you have seen the new doctor. In the meantime, do your best to relax. You're doing all the right things and really are not at significant risk for a bad outcome.

---
46 months ago
Hi again-
My babysitter is sick, so I had to reschedule the gyn appt. And now cannot get in until late January! Do you think it's okay to wait this long? Or should I be trying for Planned Parenthood or something more immediate? I know you are saying I am responsibly following up and thus have a low risk of ICC, but the trouble is I've been remiss since the birth of my 2nd son--and by the end of January it will have been nearly 5 years since my last pap, which seems far outside the guidelines, especially for someone with my history of high-risk HPV and CIN1 (despite two normal paps since then). Thanks again! 
H. Hunter Handsfield, MD
H. Hunter Handsfield, MD
46 months ago
In the uncommon cases in which low grade dysplasia (LSIL, CIN I) progresses to cancer, the typical time frame is 10+ years. There is no risk of waiting until January for further evaluation. However, I say this from a strictly medical standpoint; your anxiety and fears deserve attention, and obviously it would be best from that perspective to be seen sooner. You might try having a conversation with the scheduler (or ideally a nurse) in the doctor's office about your anxieties and request they find a way to see you sooner. Practices that book that far in advance often have appointment cancellations as well, and my guess is they could fit you in if they try.

This is the first you have said you had an actual HPV test and that a high risk type was found. But even if so, it doesn't change the risk of progression. The LSIL/CIN I finding determines prognosis, not HPV type. Even with high risk HPV types, the vast majority do not progress to cancer.

That concludes the two follow-up questions and replies included with each original question, and so concludes this thread. Please do your best to think coolly and objectively, and not worry so much about this. Your concerns are way more than those of 99% of women in your situation. Really you shouldn't be worried at all.

I hope the discussion has been helpful. Best wishes.

---