Previous Thread
Next Thread
Print Thread
#95732 05-19-2009 08:45 AM
Joined: May 2009
Posts: 1
mare83 Offline OP
Member
OP Offline
Member

Joined: May 2009
Posts: 1
Hello to all, my name is Mary and I am 25 years old. For the past 5 months I have had a recurring sore throat. My tonsils were removed in 2003 due to chronic infection, since that time I have not had a single sore throat, up until 5 months ago. I noticed a nodule on my left tonsillar pillar about 5 months ago. The ENT I have been seeing says it is normal tissue that will be there for the rest of my life, however I know that it was not there before and it looks extremely different from the right side. I also know that I have HPV.
I have been tested for strep., mono., thyroid, lyme disease, acid reflux, and a few others because with the sore throat I have also been experiencing fatigue, dizzy spells, night sweats, and headaches. Recently, along with my sore throat, I have been experiencing left ear pain, small amounts of blood when I blow my nose, and sometimes a sore left neck. I have had 3 different dentists recommend a biopsy of the area but my ENT would not do it. One of the dentists even used the VELscope on it and said the area didn't appear darkened but he still wanted me to have a biopsy done. I had a referral to an oral surgeon but once they found out the nodule was on the tonsillar pillar they said they wouldn't be able to do anything about it and told me to see an ENT. So I have an appointment with another ENT coming up this week. I'm worried this one will not want to do a biopsy as well. My first ENT told me I am obsessed and that stress can lead to a sore throat. He also said to stop thinking about it and it will probably go away. I saw him in January when he said it was probably just a virus and then in April he ordered an Esophagram because he thought I had acid reflux, which turned out negative.
Can I be firm and tell the new Dr. that I NEED a biopsy? I can feel the area of the nodule get very sore whenever I open my mouth wide or stick out my tongue to brush it. It is very sore and sometimes it burns when I breath. Doctors have also told me that cancers do not cause pain, well I think each person might be different and even if this nodule, which appears to be getting larger to me, is not cancerous it IS something that is causing me pain and they seem to think it's all in my head.
Did anyone else have pain with HPV related cancer? Does anyone know if the tonsils are absent, can an HPV cancer grow on the pillars? I am also upset because if this does turn out to be cancer, and obviously I don't know without a biopsy, but it could have been caught 5 months ago.

Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
Offline
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
First off I'm not a doctor just someone who had a virus, HPV, that tried to kill me so I have tried to learn as much about it as I can.

I personally didn't have any pain associated with my HPV related SCC, either in my Primary which was the BOT or my 2 affected nodes.

Just because you tested positive for HPV (I assume cervically) doesn't mean it traveled to your tonsil region. There has not been any evidence to suggest that it travels throughout the body but there is evidence that it must be transmitted by contact from body region to another body region.

I also believe that even though the tonsils were removed it is possible for the HPV to infect the Squamous cells remaining in that region including the Pillars.

Re the biopsy, I would probably push for it.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
Joined: Mar 2002
Posts: 4,912
Likes: 52
OCF Founder
Patient Advocate (old timer, 2000 posts)
Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2002
Posts: 4,912
Likes: 52
Unilateral ear pain is a classic symptom for our disease, so are chronic sore throats. Tonsillectomies never remove 100% of the tonsillar tissue, meaning disease that is attracted to those tissues (SCC HPV+) could still be attracted to that area. Please note that while all this is factual, no one can tell you over the Internet, let alone a non doctor such as myself, anything definitive. Were I you, I would move from the group of ENT's, etc. that you are seeing, and see someone at a CCC that is familiar with oral cancers, just to be sure.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.

Moderated by  Brian Hill 

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,168
Posts196,925
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5