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National Cervical Cancer Coalition


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 Post subject: Me Again...More Confused
PostPosted: Sun Apr 01, 2007 6:11 pm 

Joined: Thu Mar 15, 2007 5:56 pm
Posts: 9
I had an abnormal pap in Nov 2006. I returned in Feb 2007 for another pap. I found out a couple of weeks ago that I tested Positive for High Risk HPV (one of 13 strains-undetermined). The pap also showed that I was at Pre-Cancer/Stage 1 for cervical cancer. I do not have a cervix as I had a hysterectomy in 2000. I had a colopscopy last week. My gyn said I could not have cervical cancer and took 4 samples of vaginal tissue. She also removed 2 moles, skin tag, and two samples of vulva tissue. There was a message on my recorder Friday afternoon from her. She said the biopsies came back Normal and I tested Negative for HPV. What is the deal? I'm confused. Do I have HPV or is there a mix up at the lab? I will call her tomorrow and request a copy of my biopsy results. I am scheduled to see my primary care physician next week. I want to scream as I am more confused that ever. Are there any drs who know alot about this HPV? My sister works at a hospital and she has advised me to DEMAND another pap be done. This is unreal. If I don't have HPV will really be pissed at the lab for putting me through so much stress.

Any ideas or anyone else had this experience. Thanks in advance for your input.


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 Post subject:
PostPosted: Sun Apr 01, 2007 8:12 pm 

Joined: Mon Feb 19, 2007 7:48 pm
Posts: 75
Well, I'm not sure I can help answer your question. Perhaps on Monday, Fredo can make a better suggestion. Now I know you can still contract HPV, low and/or high risk, whether you have a cervix or not. I really recommend going to this site's HPV section here (if you haven't already):

http://www.ashastd.org/hpv/hpv_learn.cfm

I'd probably do just as your sister suggested, and ask for another pap. Plus also ask for an HPV DNA test to be done at the same time. I'd insist on it! It's like did they originally do an HPV test along with the pap? When they did the biopsies, did they run an HPV test again on the vulva tissues? Not sure if they can make a sound decision just based on biopsy a mole and/or skin tag. You could have HPV, and the biopsy on moles/skin tags be just that. Not like warts or anything. I dunno. I'm by no means an expert, but can see where you're coming from as someone trying to figure this all out. Sounds awfully confusing.

Doctor's can all depend. Everyone has a different outlook/opinion of the virus. Being a woman, I prefer to stick with an obgyn, but then again, I've read some people having not so pleasent experiences with their's. Vice-a-versa when it comes to a general practitioner. It's just a matter of finding someone who'll communicate with you, and answer your questions the best they can. Plus, sometimes dr's will have their varying opinions on the virus. That's because there's so much about the virus they're still finding out. Based on info out there, some dr's will have slightly different opinions. For example: Some will say that once your immune system fights it off, you're clear for good. Yet other's will dispute that, yes, you're immune system can fight it off, but into remission. It is still with you, even though you have no symptoms. That there's always a chance it could "pop" back up for whatever reason. Whether it be a major illness, stressful event, pregnancy, etc.. It's frustrating, I know. If you find you're not getting good enough answers after this, perhaps it's time to look for a new obgyn...unless you prefer to go through your regular dr from here on out.

Sorry to be so long winded there. Again, it's all my opinion/comments. :) But in the end, if I were you, I'd definitely be insisting on another pap and an HPV test...ask for testing for both high and low risk hpv. Just to be sure. I'm not so sure I'd be so comfortable after all that either.

Goodluck and let us know how it turns out.


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 Post subject:
PostPosted: Mon Apr 02, 2007 9:02 am 
Site Admin

Joined: Wed Oct 04, 2006 4:08 pm
Posts: 2122
Location: North Carolina
Rogue - first let me say thanks for your helpful comments over the weekend!

Gulliver - It does seem as if there are some questions here that only your healthcare provider will be able to sort out. A Pap test done with a woman who has had her cervix removed is usually a vaginal smear, looking for vaginal pre-cancers and cancers (vaginal cancers are very, very rare, to be sure). HPV DNA testing is licensed for clinical use as a cervical cancer screen (or to detect the presence of "high risk" HPV when Pap test results are unclear), but sometimes is used in an "off label" manner. It isn't clear just how the HPV test might have been used with you since you mention having had your cervix removed and again, your doctor can straighten that out for you.

If you don't mind, I would appreciate having you follow up with us to let us know what you find out, and how you're doing. I wish I could tell you more but good luck and we'll be waiting to hear from you (if you feel like posting again).

Fredo

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 Post subject: More Questions
PostPosted: Mon Apr 02, 2007 5:20 pm 

Joined: Thu Mar 15, 2007 5:56 pm
Posts: 9
Thanks Fredo and Rogue for your responses. Thank god for this forum. I am learning more than I ever would about HPV.

I'm normally a fairly intelligent person but I'm having a hard time grasping this HPV thing. From what I've been reading with 80% of the public infected with this virus one would think more doctors would be educating themselves. I called my GYN today and got the nurse practioner. She told me the tissue tested neg for HPV and it was possible my body had cleared it already. I would think that if I had HPV it should be in the tissue. I can't believe that my system would have cleared it already. From what I'm reading that it takes 6 mos - 2 yrs to get rid of this virus. If I had HPV two weeks ago wouldn't you think it would still be in my vaginal and vulvar tissue?

I am scheduled to see my primary care next week. I am going to make sure that all the biopsy reports, pap tests, etc are faxed to her prior to my visit. I have a wonderful ob/gyn and a primary. I guess the more information I get, the more confused I become (i.e. information overload).

What questions should I be asking?

- Why is my ob/gyn requiring I do pap smears every six months since I don't have cervix?

- What test was used to determine I had/have HPV? The results said I tested positive for High Risk. Should I be asking if my lab also tested for low risk?

-Do I/did I have HPV?

Appreciate additional input. I don't want to waste a dr appt by walking away with more questions. Thanks in advance.


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 Post subject:
PostPosted: Tue Apr 03, 2007 8:32 am 
Site Admin

Joined: Wed Oct 04, 2006 4:08 pm
Posts: 2122
Location: North Carolina
Hey there Gulliver,

I hesitate to go into too much depth with some of your questions because frankly I'm also confused, I'm not exactly clear on just what procedures/tests you've had, and I don't want to risk stating something incorrectly that I'm not qualified to address or bringing more :?: to the matter.

It is difficult to grasp when hear you tested positive for HPV, then that you tested negative. This is one thing to ask your provider to help you understand, and you can tell them you don't understand your test results -when they say you "test" positive or negative, are they referring to HPV DNA tests, biopsy results, some combination thereof, or what exactly?

We'll look forward to hearing from you again, if you don't mind.

Fredo

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ASHA Moderator


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