Hey folks! I've been dealing with this cancer since symptoms started in January 2013. I understand that many go through a period of being misdiagnosed by their doctors, and this was my case. But I was informed and had been asking them all the right question. I'm HIV + and I knew I was at a higher risk for cancer. Over eight months my HIV specialist, my dentist and two ENTs swabbed me for a sexually transmitted infection, TMJ (dentist gave me an expensive night guard I never needed), gastric reflux and saliva gland stones.

Here's the rub: Before I left each of their offices I asked them if my symptoms could be cancer because of my HIV status and told them all I was aware that HPV could cause oral cancer...and they all told me "No, it's not cancer."

I was informed. I've been told by my oncologists and surgeon that yes, I was asking the right questions.

I should have never hit stage lV.

Now I am committed to raising awareness in the LGBT community; make doctors and dentists cognizant of the need to exam for cancer - especially within the HIV population; and ask why none of the research studies look at HPV oral cancer as caused by a sexually transmitted infection instead of tobacco/alcohol or why no studies look at the prognosis of people with both HIV and HPV oral cancer.

Welcome to OCF. sorry you were not diagnosed for so long. It does seem very odd a needle biopsy was not performed much earlier. No matter of your HIV status, some enlarged lymph node or tumor in the oral cavity should warrant at least a simple FNA biopsy.

I guess the swab test is looking for infection. Can one assume that due to HIV status, there is a strong bias that something is an infection rather than a tumor?

Your report is unusual if not unique here so please do post more about your story.

Welcome Deep Throat. I'm sorry for your troubles. You're correct that more awareness needs to be mentioned of the increased HPV rate in HIV population for oropharyngeal cancer, in addition, even in non HIV, info still lacking with the public that it's a STD that can cause cancer in the throat. From what I recall, it's a 6 fold or more increased rate, plus other negative factors with treatment, recurrence rate. Last week I saw an article for a higher rate with lesbians with hpv. Anyway, there is some, maybe limited, info out there.

Even in non HIV, oropharyngeal cancer is usually found in the late stages, misdiagnosed initially or thought as a infection where antibiotics are often prescribed at first.

Welcome, Deep Throat.
I am very sorry that your diagnosis took so long: my husband's took 5 months which was bad enough. If you Google 'HIV HPV oropharyneal cancer' and then click on the scholarly articles results, you will get some limited information, including a 2009 article by OCF's great friend, Dr. Maura Gillison. Unfortunately, this information is NOT as widely recognized as it should be.
Maria

Welcome deep. I know you were asking all the right questions did you actually ask your dr post pathology if it was HPV related cancer? I am asking because usually it is Base of tongue cancer not oral tongue cancer that is related to HPV. Hugs