Some of you may remember that last fall, I was diagnosed with cervical cancer. First I had a positive Pap smear. Then a colposcopy/biopsy confirmed a cancer diagnosis (carcinnoma more or less in situ, i.e. microinvasive), as well as the presence of HPV type 16, which was presumably the cause of the cancer.
I had a LEEP a week before Thanksgiving, and the day before Thanksgiving my doc called to tell me that the tissue removed in the LEEP had come back negative for cancer, which meant in her judgement that the cancer had been very localized, and the colposcopy/biopsy had actually removed all of it. (Strictly speaking, then the LEEP may have removed tissue unnnecessarily, but since it was precancerous anyway, I might have chosen to have it removed in any case).
My first post-op Pap came back clean, and when I went back for the second post-op Pap on Friday, my doc mentioned that the previous one had shown no indication of HPV, Type 16 or otherwise. This seemed highly bizarre to both of us, as medicine currently holds that HPV, being a virus, never fully disappears, but merely goes dormant until something (reduced immune response or whatever) makes it come out of dormancy. But if it’s dormant, it would still be detectable on a Pap smear, right?
Am I missing something? She’s going to talk to a gynecologic oncologist on my behalf, but what are the possible explanations for this result, other than sampling error? Or have I mysteriously cured myself? This is all a little freaky.
What is “type 16”? I had never heard of different types of HPV.
And yes, I believe once you have HPV you have it for life but it is no big deal, probably as much as 3/4 of the population have it and don’t even realize it. Annual checkups should detect and abnormal warts or growth.
sailor, there are a bunch of different types (strains) of HPV. 16 and 18 are the ones that cause the most cancer trouble (IIRC the few cancer-causing strains cause 40-some percent of all cervical cancers in themselves); most strains are benign, or cause genital warts, which although annoying will not kill you. Cervical cancer also rarely kills people in the developed world; most mortality in the U.S. is among women who have either never had a Pap smear, or who have let more than 5 years pass since the last one.
That’s more evidence for my freak-of-natureness; I go religiously every year, and had never had an abnormal Pap until last fall. The norm is to progress through several (or even many) years of abnormal Paps before you get even remotely close to cancer. Lucky me; mine was microinvasive, meaning it had penetrated a millimeter or so into the cervix. Cervical cancer is 99% curable if you catch it before it’s invasie, but the 5-year survival rate if you don’t catch it until it’s invaded deeper into the cervix, or God forbid other organs, IIRC is something like 7%. I really did dodge a bullet, it seems.
I knew about the prevalence of HPV, but the type that I have/had can be quite a big deal indeed. I can’t remember off the top of my head which other strains are associated with cancer, which rarely if ever cause any symptoms, and which fall somewhere in the middle. There’s more stuff on the CDC site and the National Cancer Institute sites, but I’m too lazy to look them up right now; the only reason I’m still awake is that it’s freezing and my blankets are all packed, or they were until a few minutes ago. (And isn’t it past your bedtime, young man?)
Thinking of HPV in the singular is a mistake. There are actually over 80 different types and subtypes, with more showing up all the time ( http://hpv-web.lanl.gov/stdgen/virus/hpv/). And saying “it is no big deal” is taking things very lightly, especially when the OP made it clear that she had a cancer diagnosis. The seriousness of genital warts pales in comparison to that of a carcinoma inside your private parts.
EvaLuna, I was diagnosed with cervical cancer caused by HPV two years ago and underwent a full hysterectomy. The cancer is gone (although I had another scare last year, but it was a false alarm), but my HPV still shows up. Perhaps yours just isn’t showing up in the tissue samples, but would show up in blood, maybe?
As educated as I am, I was unaware not only that some forms of HPV could cause cervical cancer, but that HPVs are so rampant. One friend who teaches high school told me one of her students was pregnant at 14, again at 16 and diagnosed with HPV-caused cancer by 18. It had spread sufficiently that she needed a hysterectomy at that tender age. Devastating. And yet so little information seems to be disseminated about it.
From what I was reading on the aforementioned website, it appears perhaps six types of HPV can cause or contribute to the development of cervical cancer: types 16, 18, 33, 51, 58, 68. There may be more, but I don’t have that information.
Eva, I had one positive Pap smear for HPV 21 years ago and it has never shown up again. I had something done to my cervix, I presume a biopsy but nobody told me at the time and i didn’t know to ask what they were doing. The biopsy for HPV was negative as well and it’s never been positive again.
These people have developed a vaccine (to be released to the market in the next two years) against HPV 16, and also some “theraputic vaccines” to treat cervical cancer due to HPV.
Thanks for the support, guys. I will say that on my doc’s advice to do whatever I can to keep my immune system up and prevent a possible recurrence (she suggested folic acid), I’ve started taking multivitamins, and they have done wonders for my general energy level. Seems a little odd to me, since I’ve always had a relatively balanced and healthy diet, but maybe I’m just one of those people who needs more vitamins than most. Odd, since I really don’t have any of the usual vices that would cause increased vitamin requirements, but there you have it.
As for the vaccine: yes, I’ll be first in line when they release one in the U.S. that protects against types other than 16 (for which it’s apparently too late, but who knows, maybe if the HPV is undetectable now I should get the Type 16 vaccine anyway?). Oddly enough, the first public reports of the successful clinical trials for the Type 16 vaccine were all over the news the day I got back from my surgery. It was really weird to watch.
Sadly, one of the main problems with testing for HPV is that the main test out there sucks ASS. I won’t get into the technical details here, but the false positive rate for the test in our lab is roughly 50%. That’s really really high. I can’t recall the false negative rate offhand, but it’s pretty high, too. So if you get one positive, then never see it again, don’t worry. That’s not uncommon. Now, if you’ve been diagnosed with cancer, there’s obviously more involved than just that one test, but again, the test is so unreliable that I personally am not too stunned by your story.
The “official” explanation provided by the company that makes the test is that sometimes HPV infections will revert and go away on their own. Personally, I don’t buy that at all. But then, they have teams of PhDs working for them, and I’m just a lowly bench monkey. YMMV.
<Hat OFF>
<Hat back ON briefly>
I should have added that if they’ve identified what type you have, it’s been confirmed through further testing, with more reliable tests. The test I was complaining about just differentiates between high-risk and low-risk types. I guess what I’m saying is that yours (Eva’s) is not a false positive. It would be Very Bad of me to make you start questioning your diagnosis without reason. But the subsequent negative results, in my opinion, aren’t all that bizarre. Just wanted to clarify that.
</Whipping hat OFF>
Eva, you said: [[(IIRC the few cancer-causing strains cause 40-some percent of all cervical cancers in themselves]]. In fact almost (or practically) all cases of cervical cancer are associated - at least - with HPV. That’s been the wisdom I’ve always heard, anyway. And it is true that some women get the dangerous strains and then seem to resolve them. Nobody knows why some women develop cancers and others don’t. I don’t know if it’s common to get cancer and THEN to resolve the HPV infection, though. What was your diagnosis, Eva? Was it “carcinoma in situ” or dysplasia?
**JilGat, ** it was carcinoma in situ, not just dysplasia. Actually, it was on the borderline of becoming an invasive cancer (my doc called it “microinvasive,” meaning it had penetrated about 1 mm into the tissue); it was a damn good thing I went for my checkup when I did. Who knows how long the dysplasia had been there; I’d never had a positive Pap before, but then I’d always been given the old-style Pap. This was the first year my doc did the Thinprep Pap on me, and look what she found! The diagnosis was confirmed by biopsy, because Lord knows nobody in her right mind would allow someone to perform surgery based on the results of a test with a notoriously high false positive rate.
Also, about the percentage of cervical cancer caused only by types 16 and 18 was 40-some percent, not the percentage of cancers caused by all HPV strains. I’ll have to poke around for the cite. The figures I’ve seen for proportion of cervical cancer associated with HPV infection is around 95%; I don’t know what causes the other 5%.
Cervical cancer is almost always a sexually transmitted infection. I think about half of the cancers are found in women with type 16 HPV, which is why they are aiming a vaccine at that one. There are actually about 20 types associated with cancer. Most of the other kinds of HPV are benign and/or lead to the externally visible warts. A study of sexually active college women found about 70% to be infected with some type of HPV. Most do resolve their infections without treatment. The types that cause cancer are usually invisible, so it’s really important to get pap smears done. Your example shows how important it is to have them done every year. Glad you caught it!
[bump, on the off chance that all the actual medical professionals were out paying over the weekend and didn’t see this]
Going once, going twice: is there any other explanation why I would no longer test HPV-positive after a cervical cancer diagnosis, besides sampling error?
Yes; if your treatment removed all of the diseased tissue, and your immune system successfully destroyed any residual virally-infected cells. HPV infections are regional; they typically don’t involve all of the cervical tissue. Eliminate the infected region of tissue, and you can eliminate the HPV.
Hope your followup tests continue to come back clear!
Update: I posted the same inquiry on a nother board, and someone mentioned she’d found out from her own experience that HPV can go dormant enough not to show up on a Pap.
Is this true? And if so, can it still be detected with some other type of test (a blood test, maybe)?
