Hi all, I need help again from the gals who have had an anal pap. I assume most of you got a copy of your reports. Which hpv test did your dr. order for the anal pap? Was it Digene hc2 (same as cervical) or another test? Living in n. Florida means I don't have access to the best healthcare--I had to drive 2 hours one way to find an np willing to do the anal pap and it took me several months to find an np willing to do this. I don't know which hpv test was used, but I just got off the phone with a Digene tech who said none of the labs he knows of are allowed to run the Digene hc2 test on non-cervical paps. He was adamant about this and asked to know which lab, which I couldn't say because after calling and asking twice, I STILL don't have a copy of my results. I'm angry at the office at this point and will try again Monday. In the meantime, please let me know which hpv test was used for your anal pap because it seems I must have it repeated. Thanks so much.
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Anal pap/hpv again--which one did your dr. order?
- By brieaukirsch
- Posted June 28, 2009 at 1:16 am · 19 replies
- In HPV/cervical cancer vaccine prevention strategies
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- By ariel1
- Posted June 28, 2009 at 10:30 am
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i have not had the test but reading your post made me curious as to what kind of doctor an np is. so many abrieviations in the world today. thanks
- By corellin
- Posted June 28, 2009 at 10:51 am
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Hi brie -- you could fed ex your sample to the lab in Lynnwood Washington (although there's probably one closer) -- It's called PPL/Cytolab, and here's a link. This lab does type-specific HPV testing (though is non-FDA approved). I'm not sure whether they also evaluate the results of an anal pap. I had an anal HPV test, which didn't go so well because the doctor had trouble getting a good sample.
http://www.ppllabs.com/locations.asp
The real experts on this would be Dr. Joel Palefsky at UCSF. It might be worth a call to his clinic to find out their technique/procedure and what test/lab they use. You can always call the lab directly to find out whether a sample could be fed exed and then evaluated, so you're not really stuck with your local labs, although it might cost you out of pocket because insurance might not reimburse "out of network."
Here's a link to a phone number for making appointments:
http://www.ucsfhealth.org/adult/cgi-bin/prd.cgi?action=DISPLAYDOCTOR&doctor id=930
- By brieaukirsch
- Posted June 28, 2009 at 12:23 pm
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Ariel hi, np = nurse practitioner which is one type of increasingly-common mid-level practitioner with the ability to rx prescriptions and even perform colposcopies if they have the right training and sub-certification. Mine was an "arnp" which = advanced registered nurse practitioner and is able to perform colpos, but it appears from my research that she is not licensed to practice in FL (long story not relevant here...)
- By brieaukirsch
- Posted June 28, 2009 at 12:33 pm
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Thanks, Corellin :))) Is this the lab you used for the hpv testing? It sounds like your lab has internal controls which is excellent. When I spoke to the Digene tech, he said they would run the test regardless of whether there were 2 cells or 200,000, because they assume there is enough. Ugh. I'm not sure which test was ordered for me or if one was ordered at all, but I'm assuming Digene hc2. I found two anal studies which used Digene:
http://www.ncbi.nlm.nih.gov/pubmed/19342375?ordinalpos=1&itool=EntrezSystem 2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDoc Sum
http://www.ncbi.nlm.nih.gov/pubmed/16078257?ordinalpos=2&itool=EntrezSystem 2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDoc Sum
Appears to be reliable, SO LONG AS the transport medium is approved--if ThinPrep I think they use PreservCyt, and SurePath uses something else. So I didn't think my saline solution cut it, until I dug around in your links and saw cervical bx can be put in sterile saline solution:
http://www.geneticassays.com/tests/395h_7575.htm
So, thank you so much! I printed out the UCSF anal pap pg. to my np for my anal appt and she seemed offended that I'd even bother because she'd done anal paps before. Yet, she collected the sample differently i.e. cotton instead of Dacron swab, fewer rotations, transport medium NOT the PreservCyt. There is no way she'd order the fancy genotyping testing from a lab she wasn't familiar with, if only because her supervising MD (my ex-obgyn) would never approve (this is the same obgyn who swore up and down to me that hpv only infected the cervix...)
But whatever, I am bringing the lab link you posted to her attn. anyway, because I'd like her to consider this test for my next cervical sample.
I did put in an email to Dr. Goldstone who said he'd need to see the actual report to see if my anal sample was reliable, but I need to GET those first. I don't know what the hold-up is (or why I was told two different things over the phone which makes me super-nervous. That same office once confused my urinalysis with another woman's). Honestly you take what you can get from some of these doctors and just leave the rest, and go somewhere else for it.
Ha I was on the phone with the Digene tech at 12:30 on a Saturday night (Sunday morning) and it's Sunday afternoon and I'm reading up on hpv how pathetic!
Sorry so long-winded (again :) and thanks
- By corellin
- Posted June 28, 2009 at 1:39 pm
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Thanks for posting those links. Really great work you're doing to make sure you get the best and most reliable test!
- By Sophie-1977
- Posted June 28, 2009 at 3:16 pm
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Hi Brieaukirsch,
Thanks for posting those links, and thanks to you also, Corellin, for the important information.
I also had trouble finding a doctor connected with a lab willing to run a non FDA approved test, but went to Dr. Stephen Goldstone for my HPV test after Jamiegirl told us that he was able to do them. The nurse who called with my results didn't tell me which type of test was run.
Would you like me to find out? I'm not sure if you discussed the testing methods with him when you spoke on the phone.
Meanwhile, I'm really angry that you're not able to get your test results from the place you go. Doctors offices need to be more aware of how stressful it is to wait and wait. And beyond that, it's one of their primary responsibilities to give patients results in a timely fashion. This is getting ridiculous.
I hope the situation is resolved ASAP. Sorry this is happening to you.
Sophie
- By brieaukirsch
- Posted June 28, 2009 at 4:30 pm
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Sophie, thanks so much. It would be great if you could find out exactly which type of collection method was used (Dacron swab, cotton swab, cytobrush, etc.) and which hpv test, but no pressure. I know once we're told results are negative, we tend to want to move on with our lives (at least until the next follow up). It seems that Dr. Goldstone may have used a Dacron swab (which is anal industry standard) but ordered a different hpv test, but he didn't give me any info. I have to have results in hand to type to him before I bother him again.
I don't know what I'm going to say this time. It will have been the third time I've asked for my written results. On the one hand, I can't rest easy without seeing them in print. But on the other hand, I don't want to piss them off, because at least this np is willing to perform tests that no doctor I've called in Florida or Georgia has even heard of! The paranoid side of me is wondering if they simply don't know how to interpret test results (come on...it's either detected or not detected, positive or negative) or they are purposefully withholding info because they think I'll freak.
Well.....thanks for letting me moan and groan, girls. I'll be back if I can find anything useful. I sincerely hope this becomes common practice if we can get the word out here, so more and more women will demand it. I have found several articles saying EVERY woman with a history of cervical dysplasia, regardless of severity, should have anal screening.
- By jamiegirl
- Posted June 28, 2009 at 11:00 pm
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brieaukirsch- I think it was the ThinPrep test from Dr. Goldstone - I seem to remember seeing that on one of my bills-lol! Anyway, I will be calling him, possibly tomorrow, because I may want to schedule a high resolution anoscopy with him...I'll let you know what I find out.
- By Dragonfly23
- Posted June 29, 2009 at 9:05 pm
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First off I'd like to state that all this confusion about what test is being used can be simply obtained from your doctors office. They will have kept a copy of the requisition slip which they sent with your specimen to the lab. This will include the laboratories internal test number and the name of the test. While this may only say "HPV test", you can still make progress from here. matter of fact, I just went through this this morning with someone else having the same issue.
All insurance companies will contract with a specific laboratory so you can get the lab info from your insurance company, you should also be able to find out from them just which center your specimen was sent to. Labs have many "satellite stations" usually only to draw blood or take samples and then forward them on to the actual lab facility.
Digene has only applied to the FDA to utilize the HC2 for cervical specimens. I have spoken to them about submitting a application to include other body parts such as anal, vaginal and vulvar but this is still in the discussion phase here so I have no answers as yet. Obviously we all know the test is reliable (10 years of history regarding its usage) and tests for HRHPV, it should matter not from where the specimen was taken, HPV DNA is HPV DNA. It is true though that they must obtain FDA approval for use for anything other than that requested on their original application which was for cervical specimens.
As to other tests used to detect HPV, someone mentioned that the HC2 was being used in some research studies. There are other tests such as PCR (polymerase chain reaction) and ELISA (enzyme-linked immunosorbent assay) which are also used in many research studies but not commercially available because of reliability issues. The last test which has been around for decades and was used on all my biopsies actually genotypes the specimen and is called in situ hybridization. This is an expensive test and takes about a month to six weeks to obtain results. Tests may often be used "off label" during research studies by the way.
Once you find out from your docs office the test number from the requisition contact the lab and go up the chain all the way to the medical director if you have to. Good luck and keep us posted.
- By brieaukirsch
- Posted June 30, 2009 at 6:15 pm
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Jamie, did you find out what kind of tests Dr. Goldstone ordered? If it said ThinPrep, then it's the same sampling technique/device as the one used for the cervix.
No luck with the doctor's office. They answer the phones only sporadically and today the computer was dead and the receptionist hung up before I finished talking. I just asked for my medical records again but I don't think she heard me. So I called the insurance company. Bonnie, without your advice I wouldn't even have thought to do that. I learned that she did order the Digene hc2 but I don't know what the results are. But at least now I know which test was ordered. Whether it was actually performed, who knows, but I want a paper copy of those results so I'll be sending a written request. I hate to do this because it feels so "legal" but I don't see any other way to get my results. I feel like I need this office at the very least for future anal paps because no other office I called would even entertain my request. And I hate not knowing what the results actually are!!
- By brieaukirsch
- Posted June 30, 2009 at 6:17 pm
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I forgot to add this to my previous post- is there any way at all to obtain copies of one's medical records OTHER THAN thru the ordering physician? Could the insurer give them up? Wouldn't they have copies of the lab results? I called the lab they were sent to. I was not allowed to talk to ANYONE...they just directed me back to the doctor's office, which as you all know is my main roadblock.
- By corellin
- Posted June 30, 2009 at 7:49 pm
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You'll need to get a copy of your medical records from the doctor -- which usually requires you to sign a release. Your insurance company wouldn't have a copy unless they were doing utilization review and requested a copy from the doctor to resolve a claim. In that case, they would only have the information that pertained to the date of service under review.
- By jamiegirl
- Posted June 30, 2009 at 11:33 pm
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brieaukirsch - when I called this morning he wasn't going to be in until 2pm and I plans with friends the rest of the day. Just got home so I will call again tomorrow...
- By jamiegirl
- Posted July 2, 2009 at 5:19 pm
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brieaukirsch - spoke to Dr. Goldstone's PA today. It was a poyester swab and a liquid test, similar to the ThinPrep. Since it's the anus it's a slightly different pap. In ay case, I also asked if I should come in for a high resolution anoscopy for the plaque he saw with the regular anoscopy (we did not know at the time if I was hpv positive in the anus), and she said (she called him first) that it might not be a bad idea. SOOooo, I am scheduled for a high resolution anoscopy the first week in August. I wish it were sooner as I want to know what is going on!
- By brieaukirsch
- Posted July 2, 2009 at 6:48 pm
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Jamie, thank you! It must be the gold standard Dacron swab with the contents swirled in a PreservCyt solution. Please keep us informed about the HRA results and I hope the plaque is nothing related to hpv.
Corellin, the office tells me they put it in the mail. I'll be gone for a week, so we'll see...
- By brieaukirsch
- Posted August 8, 2009 at 1:44 pm
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Two months and 3 requests after my anal pap smear, I finally got the results by mail. Good news? Yes, based on incomplete info.
Pap: negative for malignancy. Yay! Except it does not state: adequacy of specimen, whether the SCJ/TZ of the anus was sampled, or whether dysplasia or koilocytes are present.
The cotton swab was dipped in a huge saline solution (not the PreservCyt which would have been the appropriate STM), so I'm guessing if hpv had been in there it was too diluted to accurate results. I don't know if specimens arriving in a saline solution are testable for hpv and when I called the lab, they wouldn't talk to me. So I called Digene, and the rep assured me that test couldn't have been run on the anal pap because it isn't approved for the anus. But from what I can tell from my lab report, the Digene hc2 was used and hpv was not detected.
Meanwhile, my anus continues to itch and weep mucus during bms, and sometimes the mucus is so profuse and congealed it's just like globs of jelly. I suppose that could also be a colon issue as both one parent had colon cancer and the other, colon precancer (as well as one grandparent).
Should I have this redone? Do any of you gals under Dr. Goldstone have better pap reporting and do they report in grades like AIN1-2-3 like with the cervix?
Thanks!
- By jamiegirl
- Posted August 8, 2009 at 2:06 pm
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I don't know because my pap was normal. It was my hpv test that was positive. Did you have an anoscopy too?
- By brieaukirsch
- Posted August 8, 2009 at 9:50 pm
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No anoscopy - no one down here does these, but Martha's been kind enough to fwd the name of the practice and doctor she sees. It's about 6 hours away and I may make a day trip there. I feel like I'm getting nowhere here for my anal matters and I doubt my local path lab has ever seen/evaluated an anal specimen.
- By jamiegirl
- Posted August 9, 2009 at 1:24 pm
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Good - Martha and Bonnie are certainly good sources for anal issues.
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