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Thread: Non-HPV Cervical Cancer

  1. #11
    You know I'm 4 weeks post-op a Cold Knife Cone and I have no idea if I have HVP? I've read all of my medical reports and there's nothing mentioned on any of them about it. I go Thursday to get my results from the cone so maybe they will know something then.

  2. #12
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    I get it..

    I had cervical cancer and was also HPV negative. The doctor explained to me that although I am negative now, that does not mean that I wasn't positive at some point in my life and that my previous exposure COULD have been the cause of my cancer, but there was no way to truly know. Does it really matter?? 90% of the sexually active population wil contract one form of HPV or another...there are like 96 strains from what I understand...and it is spread by skin on skin contact. The types that cause genital warts are not the types that cause cancer, so most people never even know they have it! For men, there is no consequence..they have it, never know it, and therefore spread it..nothing to be ashamed of..and certainly nothing for your "friends" to be commenting on...

  3. #13

    It can happen, although rare...

    When I was 19 I had a tumor the size of a lemon removed from my right breast. I was told I had a better chance of winning the lottery then having a tumor in my breast at 19 years old.

    Fast forward 20 years and now I have cervical cancer and have been testing negative for HPV. My doc says the chances are extremely rare to have cervical cancer with a negative HPV. If he told me I had a better chance of winning the lottery I would have slapped him. (kidding...but trust me, I would much rather win the lottery

    So it is possible although very rare.

    If your friends are not supportive, drop your friends! With friends like that, who needs enemies!?! Regardless of whether you have HPV or not it should not be a factor in friendship, it's not like you are a serial killer or child abuser.

    Good luck!

  4. #14

    Ugh

    In 2002 I had my first non HPV carcinoma in situ removal with cone, and 1 year of clean follow ups... In 2004 I had an abnormal non HPV result and my gyno sent me to an oncologist gyno, who told me "No HPV, no need for another colpo".. my regular gyno suggested a colpo, I also have cystic fibrosis and had a rough 5 years dealing with that and I neglected any further testing or treatment and moved to another state.. 3 weeks ago I took my last test (with colpo reccomendation) to a new gyno in MI, and he repeated the pap, and said, no HPV, no colpo.. I still dont have the results of this pap, but I am sooooo worried, if I had cancer without HPV before, why why why are they not doing a biopsy now??? I have other health problems that make me vulnerable to other types of cancer and I am showing warning signs for Lymphoma as well. they are watching that too. Grrr. What is the harm of a biopsy when there is documented history of previous cancer? The kicker? Ive been in health care for over 13 years and have always advocated for my patients!!!!!

  5. #15
    Senior User
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    Hi brencot,

    Sounds like its been a nightmare between the doctors and the move. If you specifically request to have a colp, they should follow through with that request especially if the pap returns abnormal.

    I think it might be a while for people outside of this "cancer community" to realize that cervical cancer can be caused by other things other than HPV.

    I think it's great you are staying on top of this an not ignoring it. You probably know better than anyone to not ignore the patient.

    I suggest you start a thread of your own to post your story so more members of the forum can see it an respond! We all would love to hear it.
    Stage 1B1 Adenosquamous Carcinoma of the Cervix.
    Diagnosed 5.7.09 @ age 20
    Radical hysterectomy on 5.15.09

  6. #16
    Quote Originally Posted by brainman
    Therendy, I am very sorry about your Cervical Cancer. I do not have any personal experience with Cervical Cancer and little knowledge about it.
    What I do know is that HPV is NOT the only cause of Cervical Cancer. I think that the HPV commercials and education have done a disservice to women by making a large segment of our population focus almost entirely on HPV as the cause when really it is just one of the possible causes.
    Sorry, but that is blatantly wrong. You don't get epithelial transformation to cancerous & precancerous lesions without HPV in the picture. That includes squamous, and adenocarcinoma in the cervix plus the hybrid of the two those are like 99.999% of cervical cancers. The only case HPV is not required for malignant cervical lesions to develop is the other 0.0001% which are not epithelial cell tumors, rather 'small cell neuroendocrine' or Mets to the cervix, which isn't even a cervical cancer at all.

    This article clears up much of the misinformation you posted about cervical cancer, http://jms.rsmjournals.com/cgi/reprint/13/4/201, and you can go to http://www.ncbi.nlm.nih.gov and search for "cervical cancer pathogenesis" where you will get tens of thousands of hits from peer reviewed, accurate information including the fact that HPV DNA can be recovered from 100% of cervical SCC's and AISes. Pubmed also has the newest medical research findings about results of clinical trials & chemo drugs,

    Those commercials are intended to educate people so that they may make better choices regarding their health and vaccinations. It would be a shame if somebody actually read this and decided not to get Gardasil so it is this message that did a great disservice to women.
    Why has it done a great disservice to women, only? For indicating that females are afflicted with an STD? And STD's are something to be ashamed of...right? This isn't something you get because you sleep with everyone, or that is always prevented by protection since its a skin lesion, and only ~15% of sexually active adults never got HPV, most never know its there, unless they get the external warts but thats not what the commercial is about and those cause anal cancers and esophageal cancers. But HPV spreads through our society like the common cold and chickenpox. Girls need to know that so they don't lose out on important vaccines or regular pelvics & paps due to being ashamed or embarrassed.

    And if the educational commercials are a disservice to women, then they must really be one to men, who quite clearly are the source of nearly all of these young women's HPV infections. Even worse, men obviously never have pap smears or develop cervical dysplasia. A woman that sees her doctor regularly will eventually find out about the disease because abnormal cell findings are alerted to her and most doctors explain that HPV is/was around to transform those cells. Should she get a LEEP done, clear margins on the cone basically means shes free of the virus now too (its an epithelial virus). Men, on the other hand, have no indication of being infected with a 16 or 18 or 33 mucosal tissue virus type, never know they have it, may harbor it for decades and just continue to go around infecting women. Attempts to educate women about this viscious cycle is far from a disservice.

  7. #17
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    I am HPV negative and had high level dysplasia cells-precancerous cells. It is possible. My OB/GYN knows of at least one other case in her practice. The LEEP took care of it. Gardisil only protects against 4 strains of HPV and there are over 40 strains. Most people are HPV positive at some point but the immune system kicks in and fights it off and HPV will go negative again.

  8. #18
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    nms11x is flat out wrong. There have been CLEAR documented cases of cervical cancer in young girls who were virgins and with no HPV. In fact, further tests, including checking for upregulation of classic HPV oncogenes and HPV integration all concluded negative interactions. In fact, here is a pretty easily Googeable case study:

    http://www.teenslivingwithcancer.org...-to-have-kids/

    She had an adenocarcinoma of the cervix. Before, the thinking was most SCC and roughly a third of all adenocarcinomas were caused by HPV. The new evidence, though, shows it's an even greater percentage of adenocarcinomas that are caused by HPV. However, here is a clear case of a virgin, no HPV, possibly no HPV ever including vertical transmission, and she has cervical cancer.

    So, YES, it CAN happen. We now know that there are many different pathways that CAN lead to the same cancer. We know of three distinct etiologies with known chemo therapies for breast cancer. However, we don't know why there are so many other breast cancers with no known etiology. Cancer can be caused by many mechanisms, and these mechanisms can become faulty by random mutation or faulty genetics. There is NO guaranteed path to cancer.

    Hell, even smoking isn't a guarantee to cancer. Most people who regularly smoke will never ever get lung cancer. It's just a risk factor because something like 80% of lung cancer patients HAVE been regular smokers. The other causes can be radon gas, asbestos (more like mesothelioma), or inhaled carcinogens. But, frankly, most oncologists and scientists don't know WHY the other 20% end up with lung cancer. All we know is that women are twice as likely to get non-smoking related lung cancer than men.

    Anyways, you in all likelihood did not get cervical cancer from HPV. What they typically do is send in your tumor samples to look for things like p16 integration or HPV integrated genomes. If your docs say it's not HPV related, trust them. It's really not.

  9. #19
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    I have been seeing the same GYN for 18 years and have never been diagnosed with HPV. Around 5-6 years ago I received an abnormal pap result with no sign of HPV. 3 Weeks ago I had a pap that tested positive for low level lesions. I had a colposcopy that tested negative for HPV but positive for Cancer. I did IVF in the past and had a slew of blood work done and found out that I was a carrier of methylenetetrahydrofolate reductase (MTHFR) which is a genetic mutation causes a deficiency of folic acid and vitamin B9. I'm hearing that this deficiency can cause Cervical dysplasia which can lead to cervical cancer. I'm very confused and wished I had an answer to why. Is MTHFR the cause of my Cervical Cancer. Should I take folic acid and vitamin B9 to stop the progression of my cancer?

    Link remove as per forum rules
    Last edited by Didee; 10-18-2014 at 11:47 PM.

  10. #20
    Administrator Top User Didee's Avatar
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    Hello. I am sorry that you have a cancer diagnosis. We are not Dr's and can't guess as to what caused it. Your best chance for recovery is to follow your Oncologist's advice. No touted easy miracle cure or vitamin is going to halt progression of a cancer. Good luck and please let us know how you go. Usually early cancer can be fully removed with the removal of the early lesions.
    Aussie, age 61
    1987 CIN 111. Cervix lasered, no further problems.

    Years of pain, bleeding, women's plumbing problems. TV ultrasound, tests, eventual hysterectomy 2007, fibroids in lining of Uterus.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011. Scan Feb 2012 .still in remission.Still NED Nov 2012.
    Discharged Nov 2014.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma.

    Relapse Apr 2016. AITL. Some chemos then on to allo transplant. Onc says long remission was good. Still very fixable.

    SCT Aug 2016

 

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