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Old 11-04-2008, 12:59 PM   #1
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Question Just diagnosed with high risk HPV and scared

Hi, I was just diagnosed yesterday with an abnormal pap and the doctor said that I tested positive for high risk HPV and of course I am very scared. I have been trying to obtain information thru this message board but have some questions as the doctor was not too informative. I am 39yrs old and have had normal paps since I started having them at 19yrs old. I have been married for 19yrs and we both have been monogamous during this time however I am aware that I could have contacted it from a previous partner 20yrs ago. Neither my husband or I have ever had warts. My doctor has scheduled a coloscopy in 6weeks but was very vague as to what I actually have (what strains). She just said it was the high risk form. What does this mean to me? Does this mean that I definately have abnormal cells? And does it mean that they are pre cancerous or cancer? This past year has been very stressful due to a move across the country and new job so I missed having my pap this last year (first time ever that I missed getting one) and am sure did not help to fight this off. I am concerned that since I missed last years pap that this could have been present for over a year now and that I should be getting this coloscopy sooner than 6 weeks. My doctor said I have to wait 6 weeks from my pap test to get the coloscopy. Is this true? Thanks for any help you might have.

 
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Old 11-04-2008, 06:41 PM   #2
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Re: Just diagnosed with high risk HPV and scared

Hi Tmackbaker! Your story sounds similar to mine. I apologize ahead of time for the length of this post.

I started getting my paps at 19, I've had one every year since them (I'm 45) and I've never had a bad pap.

Back in December, at my annual exam, my doctor asked if I would allow her to do the HPV test at the same time. I said yes. At that time I had only the tiniest of information about HPV. I was in total shock when she told me my pap was good (as usual), but that my HPV/dna test came back saying I was positive for high risk HPV.

My husband and I went to that appointment and she explained everything. A week later, I was still so upset, confused, and distracted I had another appointment with her just so she could re-explain everything to me. I'm not totally sure why, but my doctor said that we could bypass the wait-and-retest and just go straight for the colposcopy.

I went for my colposcopy. The gyn didn't find any atypical cells on the exocervix to biopsy, so "just to check" she did an ECC (endocervical curettage) to sample the cells in the endocervical canal (cervical os). That came back adenocarcinoma in situ. That is the highest stage of precancer (some people call it cancer stage 0) - it literally means "cancer (of the glandular cells) in place". The cancer isn't invasive yet.

Anyway, everyone was shocked by the results (me, my gyno, and my regular doctor). Two weeks after the colpo and ECC I had a cold knife cone biopsy to get a better sample of the tissue in the canal. It came back adenocarcinoma Ia1. Two weeks after the cone biopsy I was sitting in the gyn/oncologist's office discussing my surgery options and time-table.

Because the cancer was caught so early I "only" had to have my cervix and uterus removed. I kept my ovaries and lymph nodes. I do not need chemo or radiation. I feel blessed that the cancer was found so early.

Anyway, I say all of that not to scare you, but to let you know what my story is.

If you feel adamant about getting the colpo sooner, ask why you have to wait. See if you can get it sooner.

The "positive for high risk HPV" means that you have an active high risk virus right now (at the time of sampling). Most people are able to fight off HPV so it doesn't cause any problems (thought it *can* reactivate later in life). Women over 30 are less likely to fight off the virus, though. If, when the doctor does the colpo, if no lesions are seen or biopsied, then it is possible that the HPV is somewhere else (like further up in the cervical os). That is why I think the ECC is so important, especially for women over 30 who have been diagnosed with high risk HPV.

Whenever you have your colpo, I strongly suggest you ask for the gyno to do an ECC at the same time. It is the only non-surgical way to sample the upper 2/3 of the cervix.

It is quite common for women with involvement of the glandular cells to have a history of good annual paps. I think the new (only 4-5 years old) HPV/dna test is acutally helping diagnosis atypical glandular cells than were found prior to the test being approved. It is worrisome and frightening, but the earlier the cell damage occurs, the better.

I don't know what to tell you besides ask if you can move the colpo up. Ask for the ECC at the same time. And every time you call or go to the doctor go with a written list of questions/concerns. Leave space for writing in answers.

I hope that helps.

 
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Old 11-10-2008, 02:23 PM   #3
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Re: Just diagnosed with high risk HPV and scared

Thank you so much for the information. I have been reading the threads on this board and have gotten lots of information. One more question for you though...did you have any symptoms at all that you can remember? Like back pain or pain with sex etc. Thanks for all your information!

 
Old 11-10-2008, 06:00 PM   #4
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Re: Just diagnosed with high risk HPV and scared

Looking back, I had periodic discomfort with intercourse, but I attributed it to my 9.4cm uterine fibroid. The only other "symptom" I had was my lymph nodes in my throat were slightly swollen, but they don't seem that way now. Otherwise, I had no symptoms, never had a bad pap (even after being diagnosed with cervical cancer). :shrugs shoulders:

Oh, I have a bad back, so I don't know that it was worse prior to diagnosis.

 
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