| Joined: Mar 2015 Posts: 1 Member | OP Member Joined: Mar 2015 Posts: 1 | 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.
Cancer sux...
Chemo/Radiation 12/2013 - 1/2014 Partial Glossectomy, Radical Neck Dissection 10/2014 Recurrence 3/2015
| | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | 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.
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | 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.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 | 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
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker First symptoms 7/2010, DX 12/2010 TX 40 IRMT (1.8 gy) + 10 Cetuximab PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | 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
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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