Lady Cervix, I curse thee! (long and upsetting)

The BBQ Pit
1

Tuesday afternoon, I found out something new and exciting about my cervix. Apparently, it’s cancerous.

Words cannot express how freaky and upsetting it is to feel perfectly fine, and have had normal checkups for one’s entire life, and then to be told out of the blue, when one is 34 and single with no kids, that one’s reproductive system is misbehaving, in a potentially lethal way, no less.

Now for the good news: it was caught very, very early on a routine exam, so my medical prospects are excellent. They’re going to laser the crap out of the thing on the 20th, and there is a 99% chance that I will be perfectly fine afterward. It’s an outpatient surgery under local anesthesia, and theoretically I can go back to work the same day. (Hypothetically, but I will probably take a few days off, just to chill and calm down.)

The scary part: if they hadn’t caught it until it had become invasive and progressed farther into the cervix or uterus, I would have had a 7% chance of long-term survival. The other scary part: I wasn’t aware of having ANY of the risk factors, which include smoking and promiscuity. Apparently 95% of cervical cancer is caused by HPV (the human papillomavirus), which is sexually transmitted, and asymptomatic for the most part.

The other major risk factor is the number of partners one’s partner has had…and since I’ve had a grand total of 2 in the past 7 years, and since it generally takes a LONG time for cellular misdevelopment to progress to the cancerous stage, my doc says odds are it wasn’t the most recent. (That, plus the other one was a lying, cheating, manipulative sonofabitch.) I’m actually sort of looking forward to telling him what’s up, because he’s such a fucking hypochondriac that he thinks he’s going to die every time he gets a new freckle. Apparently HPV isn’t dangerous to men (they’re just carriers), and maybe I’m a bit of a sadist, but I’ll let him figure that out on his own. (And one source said condoms don’t necessarily protect you; can some doc explain to me in greater detail whatever is known about how HPV is transmitted, if that’s the case?)

So the moral of the story is: a) ladies, get a PAP smear EVERY year, the liquid-based kind (brand name Thinprep), which is more sensitive (this is the first year I had the new kind, and it may well have saved my life); and b) don’t have sex with lying, cheating, manipulative jerks, even with a condom. Tell all your friends! Probably 90% of the people I’ve told so far had no idea about the relationship between HPV and cervical cancer.

Anyone who has similar experiences/advice to share, please do so. And any medical folks, especially, feel free to offer advice and additional information; the more technical, the better. And if anyone has any thoughts on how to break the news to my mom, please share; she’s going to freak out. I had to have her restrained in the ER when I broke my leg, so I can’t even conceive of how she’ll take this. I’m more apprehensive about telling Mom than I am about the surgery, if that’s possible; I’m seriously considering not telling her until afterwards.

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Call Mom from the recovery area. Really.

3

I’m glad that they caught it early!

My mom is very fortunate that hers spread slowly, because when they tested her, they told her they’d only call if the test was positive. They never called, so she figured everything was fine. Until she got a really apologetic call five months later from the office who had discovered that no one had called to give her the results- which were positive. That was in 95’ and she’s fine now, but the mind boggles at that sort of incompetency. Since then she calls and requests all lab results if she doesn’t hear back immediately, rather than assume no news is good news.

4

Women with “high-risk” factors need annual Paps - otherwise less frequent testing is appropriate.

As a pathologist I have a lot of experience with both the liquid-based Pap tests (which include ThinPrep and AutoCyte) as well as the standard smears. While the new technology is somewhat more sensitive, it’s also considerably more expensive - which can mean an unacceptable tradeoff if fewer patients get Paps because of the cost. The key is frequent screening, which is more important than the exact type of test used.

I’m glad your problem was caught relatively early.

5

**Jackmanii, ** I see your point…however, most people whose insurance covers gynecological checkups IME are covered for either test, so why not use the one which works better? My doc said it was extremely unlikely that I progressed from perfectly normal to cancerous inside a year, so chances are that the conventional test missed something it should have caught.

I had NONE of the risk factors you listed. So one never knows. Maybe I’m just a freak of nature, or really unlucky, or both, but right now I’m just glad my gyno has always had me have yearly paps, and gave me the more sensitive test. I hope it’ll get cheaper, which I assume will happen with time and if more people start using it.

6

Wow. This is trippy. I recently had my very first abnormal Pap - luckily mine is “mild dysplasia” and the doc left it up to me to have cryo done or wait for 4 months. I have chosen to have it removed - to me, a 50% chance it will go away on its own isn’t good enough.

My experience has scared 2 of my friends into going for their first Paps in years, and both have had abnormals in the past, so I guess something good has come out of it.

I know something of how you feel. I admit I burst into tears when I got the letter about my Pap. Over the past couple of years I’ve been dealing with increasingly more “female problems” - first it was the hirsutism and weight gain from polycystic ovaries, then the cysts themselves, a D&C, etc. etc. etc. It tempts me to just have it all removed, although I know that’s probably not a good idea at 30.

Good luck to you! I have no suggestions as far as your mother, goes, unfortunately. Mine freaked as well, and my diagnosis is much more “minor” than yours.

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My comment about cost was related to available health care funds in general - if there’s a limited amount of money for gyn screening, how much should be spent on a particular technology, if a not quite as good alternative is available? It’s a dilemma faced on a number of fronts.
If your insurance covers ThinPreps, that’s certainly what I’d go with.

By the way, there are a number of factors that go into how sensitive and accurate a lab test is. In the case of a Pap, that chain includes the patient (getting regular tests as recommended), the office physician (collecting and preserving the specimen properly) and the laboratory (screening by the cytotechnologist or automated screener and/or ultimate diagnosis by the pathologist). For the test to work optimally, everybody has to get it right.

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** Jackmanii:**

Well, I’m no public health expert, but to me the considerations would be:

  1. What’s the cost differential between the two types of tests?
  2. How many false negatives would be avoided with the more expensive test, and what statistical difference in treatment outscomes would result? i.e. how many less women might need expensive hysterectomies or even die because the cancer wasn’t caught earlier?
  3. Is there a way to reduce the cost impact and still improve statistical outcomes, such as having a more expensive test, but a bit less frequently?

Am I missing anything here?

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I say get the more expensive test. If you have to pay a higher premium then that’s what you do.

Glad to hear you caught it early. I hope you’ll be fine. (And, tell your mom, but don’t tell her over the phone. She’ll really want to go through this with you.)

10

<< nervously tries to remember how long since last pap smear >>

<< makes note to schedule pap smear ASAP >>

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More info than a girl could ever hope to absorb about cervical cancer:

http://www.cancer.gov/cancer_information/cancer_type/cervical/

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Eva, here’s a recent overview of recommendations and controversies in Pap screening.

The manufacturers of the new cervical diagnostic tests are employing very aggressive ad campaigns to convince us that their tests are much better - but as the linked article shows, the benefits are somewhat controversial. As to cost, the claim is made by the makers of ThinPrep that their test costs $45-60, compared to $25-40 for the conventional Pap smear. I find that inaccurate, seeing that lab reimbursements by insurers for the conventional smears are running closer to $15 on average. So is a test that detects more abnormalities but may not save more lives worth 3 times the cost, given the high costs of health care? Tough one to answer on a general basis, much easier if it’s you or a close family member who’s involved.

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Well, in the future, I personally would gladly pay the extra bucks out of pocket for the more accurate test…and I’m going to be in for quite a number of these over the next few years.

But for an accurate comparison, what’s the insurance reimbursement rate for ThinPrep been like? Is the $45-60 figure applicable to non-negotiated costs?

14

HPV is spread even when condoms are used because it’s not a fluid exchange thing, it’s a skin thing. As a matter of fact, HPV covers both genital warts and stuff like plantar’s warts. Genital warts, however, are the kind we gotta worry 'bout.

My uncle wrote a book on this STD. I’ve been reading it. It’s estimated 50% of sexually active women have it. Only about 20 strains out fo 200 are carcinogenic.

If you’re really freaked Eva, I can only recommend getting information. The more you know and all, and you’ll definitely feel more comfortable and less scared of what the heck it is.

15

I hear ya, Eva. I’m going through a very similar situation right now. It’s been ongoing for the past 3 years or so and the doctor finally said “Enough!” and is gonna LEEP my “bad cells” away. The odd thing is there’s no indication that I have HPV and all my biopsies come back “normal” even though PAP’s come back with high-grade dysplasia.

I’ve had numerous biopsies and cryosurgery and so now it’s time for LEEP. I’m not looking forward to it, but from what I’ve read/heard it’s not that big a deal.

There’s quite a few women here on the boards who have posted about their experience with the oftentimes problematic Lady Cervix; if you do a search you can find lots of good information/support in those threads.

Best of luck to you, Eva.

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My lab is going to be adding a liquid-based system (AutoCyte) early in January. Unfortunately, I don’t have the exact estimated per-test insurance reimbursement figures before me at this moment (the hazards of posting from home), but I do remember they were approximately $35/test.

By comparision - my lab was recently compelled due to rising costs to increase the price we charge our clients for a conventional Pap smear - to $8.25.

The three-fold or greater difference in reimbursement generally holds for insurance reimbursements (if the lab is lucky - some benighted insurers still don’t reimburse liquid-based Pap smears at a higher rate - and we won’t perform the test for those insurers because we can’t afford to, the lab will lose money doing so). And, no, the cost WON’T decline appreciably as the test comes into wider use, because most of the difference in price between the two methods is due to the expensive equipment and special media and collection devices needed to perform the liquid-based test, and those costs are essentially fixed. Any savings to the health care system will have to come via increasing the intervals between routine Pap smears in low-risk women, and (when used in conjunction with HPV testing) in decreasing the number of patients requiring either more frequent followup smears or colposcopy - and it’s not clear whether those savings will actually come about, or whether people will switch to the new liquid-based test while adhering to the practice patterns that were devised during the time of the conventional Pap smear.

Another thing the companies who are so aggressively marketing these tests don’t tell the general public is that there are some downsides to screening a liquid-based Pap smear - it’s NOT as simple as “liquid-based is better”. The liquid-based methods result in a random distribution of the cells on the slide, which can make the abnormal cells harder to spot - while on a conventional Pap smear the abnormal cells are often found in close association, which can make them easier to see. And a liquid-based slide has fewer total cells on it than a conventional Pap smear - which means there are thus fewer abnormal cells for the cytologist to look at. That can make it more difficult for the pathologist to classify the degree of abnormality - and can sometimes result in missing the diagosis of a high-grade lesion because only one or two abnormal cells were present on the slide, and they were either not seen or were misclassified.

Personally, I think the greatest benefits of the liquid-based Pap smear technology will result from coupling it with HPV testing on women whose smears show ASCUS (a type of abnormality which may be a sign of HPV infection, but which more commonly results from other causes); women whose Pap smears show ASCUS but who are negative for HPV won’t need to have repeat Pap smears in six months, or surgical biopsies - and that is a clear benefit to the patients. But I wish that all the energy these companies have expended in marketing their systems to the public in the women’s magazines had instead been directed into encouraging women to get ANY type of Pap smear regularly, for that would do more to decrease cervical cancer deaths than any fancy new technology, since most women who die of the disease either have NEVER had a Pap smear, or have gone more than 5 years between tests!

17

Saying that it’s nothing to worry about sounds like it’s diminishing what you’re going through, and that’s not my intention. I too had an abnormal pap smear out of the blue, 4 years ago when I was 24, actually. At that point I’d only had one partner (my now ex-husband) and had not been going in for checkups regularly. After my seperation I went in for an exam to get set up with birth control and wham “Happy 24th birthday, and by the way, you’ve got cervical cancer.” Talk about a hell of a year!

Anyway, I had the freezing proceedure done 4 months after my tests came back positive. It wasn’t pleasant by any means, but I would only rate it as mildly painful, and uncomfortable, to be sure. You could go back to work afterwards, but your plan to take the next day as well to mentally recoup sounds like a good idea, it’s what I did.

Look forward to <tmi warning> pieces of your cervix well, sliming their way out for a few weeks </tmi>, and if you’re having sex, it’s best to wait awhile after the proceedure, and be warned, you’re going to be tender for some time.

It was recommended that I have a pap done every three or four months for a year afterwards, and then once a year after that. Four years later, and I’ve not had an abnormal pap again.

In the scheme of things, it’s upsetting to you now, as it should be, and as it was to me, but as time goes on, the memory serves more as a warning to be vigilant about my checkups than it does as a horrible time in my life, if that makes sense.

Best of luck to you.

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I had a Cin 2 treated about 6 years ago (by cone biopsy etc) at the age of 36, prior to which I had had normal smears every year or two since I began having them at 20. I too was told that there was evidence of HPV, but the one and ONLY time I had experienced genital warts was at the age of 17. They were duly ‘treated’ and I had not (and have not) had a recurrence since then. However, as has been suggested, they are generally asymptomatic, and the virus can lay dormant in the system for ages.

So, basically for me, we’re talking about a 20 year lapse between initial infection and development of cervical dysplasia. Eva Luna, it may not even have been the SECOND most recent partner, despite him being a lying, manipulative sonofabitch. :smiley: I don’t know how old you are (or obviously your sexual history) but don’t discount the possibility that it could have been someone from waaaaaay back.

And all my smears have been clear since, so I’m jolly happy. :slight_smile: Don’t worry yourself…you’ll feel like a new girl afterwards!!

19

Laurange has an important point–HPV is so freaking common. Frankly I wouldn’t bother tracking down a sexual partner to tell him because what the hell is he gonna do about it? It can’t be treated and you can’t prevent its spread without abstinence. Potential HPV exposure is now a part of sexual activity. It’s a fact of life. Many of us carry it. I do.

I have had a similar experience except I had dysplasia, meaning I didn’t have cancer; the cells were “suspicious” and might even be called “pre-cancerous” but it wasn’t cancer. No radiation or chemo for me. One painful biopsy and then a hospital outpatient procedure that lasered the part of the cervix off. Six weeks of gross weepy discharge and I was done with it.

It was so scary at the time, but I know now that countless women have gone through the same thing and for most of us, it’s not a death sentence or even a high-risk situation as long as you are seeking medical care.

For those of you worried about this, some doctors are now of the opinion that it is safe to wait and see with some dysplasia, as long as the doctor monitors the situation. Some bodies seem to be able to heal on their own. After my procedure I moved, and joined a longitudinal study being done by a doc. I got regular colposcopies and photographs taken of my cervix. Anyway, she said if I had been her patient she’d probably have waited.

My cervix is fine now. Didn’t interfere with pregnancy, either.

Now, ten years later, my doctor doesn’t think yearly pap smears are necessary for me. Opinions, apparently, differ.

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**Cranky, ** some good points up there. However, there are LOTS of women who don’t have regular Paps and don’t take care of their bodies, and my most recent ex tends to date women with low self-esteem who might be likely to be in that category.

If I’ve even remotely exposed anyone to HPV, directly or indirectly, I want them to know about it so they can keep an eye on their own reproductive health. I may have broken up with these two exes, but I wouldn’t want any subsequent partners of their to pay the price.

Plus, I admit that there’s a part of me that wants to twist the guilt knife in the metaphorical gut of the ex who probably gave this to me, since he has never shown any remorse for cheating on me and is generally convinced that there are no human consequences of his actions to others. There are.