Aa
Unclearing HPV
51 yo and have been dealing with abnormal PAPS for about a year but did have a vulvar biopsy about 3 years ago which showed HPV changes even back then but no abnormal PAP at that time. I've had 3 or 4 colposcoipes - only 1 requiring a biopsy which only showed inflammation; other colposcopies required no biopsies. Last PAP also included an HPV identification which showed 16. Last visit with oncologic gynecologist was frustrating since he said this may not ever clear since it's been almost 3 years already. Not concerned with cervical cancer since I've had a complete hysterectomy and not really concerned about vulvar or vaginal cancer since I'm being closely screened and these cancers are rare. I'm more concerned with any future sexual activity and how do I tell someone and not scare them away. I know men usually show no symptoms but are at increased risk for penile and head/neck cancers. I'm very frustrated with the thought of never having another sexual relationship.
Actually your situation is a little complicated and it sounds like you have been through a lot…
The standard thought would be that you really don’t need a Pap because you don’t have a cervix and your hysterectomy showed no signs of cancer which would put you at higher risk. Many Doc’s differ in their opinion on this and you need to have your own comfort level with your testing. Since you have had mild vaginal changes, I can understand why they are monitoring you. ASCUS means very little on a Pap and at your age is probably due to atrophy and menopause. I’m a little confused because you said that CIN 1 came back on your Pap recently and the Pap prior was VAIN 1. These results would be colposcopy results (actual tissue samples) and not Pap, and you said that there was only 1 colpo result that indicated inflammation, no other biopsies? (And I differ with your Dr. if it was a vaginal specimen it should be called VAIN and not CIN) Your VIN 1 vulvar biopsy is really inconclusive and it could really be age related changes and medication and it could have been HPV but since there was no testing there is no way to know. It might be important to find out the results of the punch biopsy.
You had a vulvar lesion that you had forever and it did not change (it is changes that you worry about). ASCUS is a very ambiguous result and this has not changed to a higher level of abnormal Pap, (unless you have other results) which might put you at risk. The VAIN and VIN l’s are a very mild abnormality and could be related to meds, age etc. Your only indication that you have HPV is this recent test that indicated HPV 16. It appears you have only been tested once for HPV—Is that true? A one time HPV means nothing and you cannot assume that you have had this for 3 years or more. It is important to have accurate testing for your own piece of mind. Your immune system may be slightly compromised due to your meds but only you would know that and that might increase your risk. Radiation and chemo can compromise your immune system. A compromised immune system could contribute to persistence (Don’t jump to conclusions on this). But I would guess if you had this any of these treatments, it was finished before you had abnormal Pap results.
I would not worry about a future partner. Most people (approx 80%) have HPV at some point and they clear the virus. Therefore most men that you would meet have been exposed at some point if they were sexually active. And penile and oral cancers are rare, rare, rare!! The approx number of new cases of penile cancer a year is around 1000 men and there are 150 million men in the US. And even then not all penile cancer is associated with HPV. They also only know that there is a relationship with HPV and cancer, they don’t know what the relationship is. Surprise! The thought is there are additional factors and probably some of those are genetic that contribute. So having HPV does not cause cancer, some with persistent HPV may get cancer (but again not ALL only a FEW with persistent HPV get cancer) but usually with additional risk factors that are presently not known. And since there is no test for men, how would you know that you are not getting HPV from him??—I know that also sucks. That is part of the reason that I don’t like HPV testing, most people have nothing to gain except worry with HPV testing. Do you know what HPV test you had? The only one in the US that is FDA approved is not a 100% indicator (can give false positive and negatives) and only tells you if you have one out of a group of 13. There is an additional one that tells if you have 16 or 18, but it is a combined result so you don’t know which you are positive for. There are other “off label” PCR DNA HPV tests that are done in the US but some of them have problems with accuracy. There is only one that I know of that is 100% accurate.
I think you should now start to enjoy your life, including being sexually active if you want. If you are really concerned consider having another HPV test but make sure it is accurate. But just understand that no one really understands HPV and its relationship to cancer, not even the scientists that study it, so it is not possible for most Dr.’s to understand it. They make educated guesses on treatment with what they know and treatment regimes vary from Dr. to Dr. Until more is known about HPV, all HPV testing seems to be doing is scaring a lot of people with very little risk of having cancer. I think putting HPV tests on the market was premature and there has been a lot of controversy on the marketing and some fingers pointed at the FDA for approving a test that sends 95% of women for coloposcoy unnecessarily. I used to be in the camp for full disclosure to partners for a positive High Risk HPV result, now I believe that with a one time positive result that is not necessary and it also depends on the HPV test done. Most HPV (over 90%) clears from the body within 4 months, thus the reason for accurate testing.
I do understand your concern regarding a relationship but rejection can happen in a relationship for a million reasons so I think you are going to have to trust that this won’t be an issue and it would be unlikely for you to pass this on in a monogamous relationship. And a smaller risk with condoms, not a 100% but they decreases risk. And while your concerns are very legitimate to want to protect a partner just think of the number of women that have had the same results as you but are already in a relationship. They don’t stop enjoying their sexual life. You are a cancer survivor so I wouldn’t let this test result get you down and ruin your chances for future happiness.
The standard thought would be that you really don’t need a Pap because you don’t have a cervix and your hysterectomy showed no signs of cancer which would put you at higher risk. Many Doc’s differ in their opinion on this and you need to have your own comfort level with your testing. Since you have had mild vaginal changes, I can understand why they are monitoring you. ASCUS means very little on a Pap and at your age is probably due to atrophy and menopause. I’m a little confused because you said that CIN 1 came back on your Pap recently and the Pap prior was VAIN 1. These results would be colposcopy results (actual tissue samples) and not Pap, and you said that there was only 1 colpo result that indicated inflammation, no other biopsies? (And I differ with your Dr. if it was a vaginal specimen it should be called VAIN and not CIN) Your VIN 1 vulvar biopsy is really inconclusive and it could really be age related changes and medication and it could have been HPV but since there was no testing there is no way to know. It might be important to find out the results of the punch biopsy.
You had a vulvar lesion that you had forever and it did not change (it is changes that you worry about). ASCUS is a very ambiguous result and this has not changed to a higher level of abnormal Pap, (unless you have other results) which might put you at risk. The VAIN and VIN l’s are a very mild abnormality and could be related to meds, age etc. Your only indication that you have HPV is this recent test that indicated HPV 16. It appears you have only been tested once for HPV—Is that true? A one time HPV means nothing and you cannot assume that you have had this for 3 years or more. It is important to have accurate testing for your own piece of mind. Your immune system may be slightly compromised due to your meds but only you would know that and that might increase your risk. Radiation and chemo can compromise your immune system. A compromised immune system could contribute to persistence (Don’t jump to conclusions on this). But I would guess if you had this any of these treatments, it was finished before you had abnormal Pap results.
I would not worry about a future partner. Most people (approx 80%) have HPV at some point and they clear the virus. Therefore most men that you would meet have been exposed at some point if they were sexually active. And penile and oral cancers are rare, rare, rare!! The approx number of new cases of penile cancer a year is around 1000 men and there are 150 million men in the US. And even then not all penile cancer is associated with HPV. They also only know that there is a relationship with HPV and cancer, they don’t know what the relationship is. Surprise! The thought is there are additional factors and probably some of those are genetic that contribute. So having HPV does not cause cancer, some with persistent HPV may get cancer (but again not ALL only a FEW with persistent HPV get cancer) but usually with additional risk factors that are presently not known. And since there is no test for men, how would you know that you are not getting HPV from him??—I know that also sucks. That is part of the reason that I don’t like HPV testing, most people have nothing to gain except worry with HPV testing. Do you know what HPV test you had? The only one in the US that is FDA approved is not a 100% indicator (can give false positive and negatives) and only tells you if you have one out of a group of 13. There is an additional one that tells if you have 16 or 18, but it is a combined result so you don’t know which you are positive for. There are other “off label” PCR DNA HPV tests that are done in the US but some of them have problems with accuracy. There is only one that I know of that is 100% accurate.
I think you should now start to enjoy your life, including being sexually active if you want. If you are really concerned consider having another HPV test but make sure it is accurate. But just understand that no one really understands HPV and its relationship to cancer, not even the scientists that study it, so it is not possible for most Dr.’s to understand it. They make educated guesses on treatment with what they know and treatment regimes vary from Dr. to Dr. Until more is known about HPV, all HPV testing seems to be doing is scaring a lot of people with very little risk of having cancer. I think putting HPV tests on the market was premature and there has been a lot of controversy on the marketing and some fingers pointed at the FDA for approving a test that sends 95% of women for coloposcoy unnecessarily. I used to be in the camp for full disclosure to partners for a positive High Risk HPV result, now I believe that with a one time positive result that is not necessary and it also depends on the HPV test done. Most HPV (over 90%) clears from the body within 4 months, thus the reason for accurate testing.
I do understand your concern regarding a relationship but rejection can happen in a relationship for a million reasons so I think you are going to have to trust that this won’t be an issue and it would be unlikely for you to pass this on in a monogamous relationship. And a smaller risk with condoms, not a 100% but they decreases risk. And while your concerns are very legitimate to want to protect a partner just think of the number of women that have had the same results as you but are already in a relationship. They don’t stop enjoying their sexual life. You are a cancer survivor so I wouldn’t let this test result get you down and ruin your chances for future happiness.
Oops, I meant Holly!!
I don't have my pathology results here at the moment; I'll have to look them up and see what the specifics are.
I had hysterectomy at 45 due to possible ovarian and/or uterine cancer; CA 125 was elevated and had a large septated ovarian cyst plus my uterine wall was quite thickened; fortunately, all was benign and probably abnormalities were a result of medication I was on for breast cancer.
This last PAP showed CIN1 despite not having a cervix - doc said they still call it that eventhough it's from the vaginal cuff. The PAP prior to that came back VAIN 1, and the original abnormal PAP about 18 months ago came back as ASCUS.
The original vulvar biopsy was due to an area I've had my entire life that had a tendency to break and bleed with intercourse but my previous gyn all of a sudden said he needed to biopsy it and that's the pathology that came back VIN1 - hpv changes but no testing for type of hpv was ever done until this last PAP so I have no idea if it was 16 back then or maybe a different type or just "suggestive" of hpv changes. I've had some vulvar issues in the interim - some itching and alot of atrophy but, again they're saying it's menopausal changes which are intensified due to breast cancer medications. I've been off the Arimidex for about 3 years but just started Evista for the resulting osteoporosis; doc says Evista effects shouldn't be as bad as the Arimidex but since it's still an anti-estrogen med, who knows with me!! I did have a vulvar punch biopsy about 18 months ago and I believe it was just inflammatory - I'll have to check that pathology report as well.
I had read on the internet somewhere that being very atrophic could contribute to the persistence of the hpv but my doc says no...sounds logical to me though since I never, ever had an abnormal PAP in my entire life prior to the hysterectomy and atrophic changes.
Like I said, I'm not as concerned with the malignancy issues since I'm being monitored - maybe over monitored as you point out, but I think once you've had cancer, all of the docs are a bit overconcerned about everything - but I'm more concerned of not ever being able to be sexually active again in fear of my partner rejecting me or worse his not rejecting me and him being one of the rare cancer cases!!
This hpv is so much of a head game - it sucks!!
Thanks for your response and your concern, Kelly.
I had hysterectomy at 45 due to possible ovarian and/or uterine cancer; CA 125 was elevated and had a large septated ovarian cyst plus my uterine wall was quite thickened; fortunately, all was benign and probably abnormalities were a result of medication I was on for breast cancer.
This last PAP showed CIN1 despite not having a cervix - doc said they still call it that eventhough it's from the vaginal cuff. The PAP prior to that came back VAIN 1, and the original abnormal PAP about 18 months ago came back as ASCUS.
The original vulvar biopsy was due to an area I've had my entire life that had a tendency to break and bleed with intercourse but my previous gyn all of a sudden said he needed to biopsy it and that's the pathology that came back VIN1 - hpv changes but no testing for type of hpv was ever done until this last PAP so I have no idea if it was 16 back then or maybe a different type or just "suggestive" of hpv changes. I've had some vulvar issues in the interim - some itching and alot of atrophy but, again they're saying it's menopausal changes which are intensified due to breast cancer medications. I've been off the Arimidex for about 3 years but just started Evista for the resulting osteoporosis; doc says Evista effects shouldn't be as bad as the Arimidex but since it's still an anti-estrogen med, who knows with me!! I did have a vulvar punch biopsy about 18 months ago and I believe it was just inflammatory - I'll have to check that pathology report as well.
I had read on the internet somewhere that being very atrophic could contribute to the persistence of the hpv but my doc says no...sounds logical to me though since I never, ever had an abnormal PAP in my entire life prior to the hysterectomy and atrophic changes.
Like I said, I'm not as concerned with the malignancy issues since I'm being monitored - maybe over monitored as you point out, but I think once you've had cancer, all of the docs are a bit overconcerned about everything - but I'm more concerned of not ever being able to be sexually active again in fear of my partner rejecting me or worse his not rejecting me and him being one of the rare cancer cases!!
This hpv is so much of a head game - it sucks!!
Thanks for your response and your concern, Kelly.
Actually from what I am reading you have nothing to worry about. Both the Pap test and HPV test are screening tests. Thus they should pick up if you are at risk before you have disease. They can pick up abnormalities and abnormalities that don’t mean anything or inflammation such as you had with colposcopic biopsy. If you have had several colpolscopies that indicate no disease, then that means no changes in the cervix therefore no abnormal cells in the cervix therefore no disease, just inflammation. At your age, which is menopausal there are often changes in the cervix that are normal but may show up on a Pap as cells they are unable to determine. Do you still have your cervix after your hysterectomy? You may have been having Paps for no reason. (Usually a complete hysterectomy means they remove the cervix also)What was the reason for the hysterectomy and how old were you when you had the hyst? What was your Pap result, was it ASCUS or a higher level of abnormal Pap?? What test did they do to identify that you had HPV 16? It takes a very specific test more specialized to distinguish 16 vs. 45; 11 vs.18 etc. Some of the HPV tests are not reliable so it is important to find out what test they did. Did you test positive for HPV 16, three years ago and then again now, that might be the only way for your Gyn to indicate that it might not clear (but it still can) and then how does he explain your normal colposcopy!! As far as the vulvar biopsy goes, have you had further symptoms? Or was this a one time biopsy? You may be over screened and over treated for no reason. Also, we would like to think that a biopsy is a definitive result but if it only stated “suggestive of HPV changes”, this may be guess work by the pathologist seeing a few unusual cells on the slide (not an actual HPV diagnosis). What was the actual vulvar biopsy result, was it a precancer such as CIN l, CIN ll or CIN lll (this is precancer)? I am presuming by your note it was not cancer of which there are about 5 further additional stages. As far as future relationships, it may be that there is no risk at all, to either yourself or a partner. And as you already know penile and oral cancer is rare. Post your results and the specific test and wording on them if you have them.
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