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#152609 07-31-2012 09:29 AM
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atlguy Offline OP
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Hey Everyone,

I have a bit of a long story so hopefully, you can bare with me while I explain.

In February of 2012, I started dating a woman, and it turned pretty serious in a short amount of time. At any rate, I gave her oral sex frequently, from March up until June of this year. At the beginning of May, she had advised me that she was going in for her yearly female exam, and was going to get a pap.

During the month of May, she got the results that she had high risk HPV. From that point, on I was completely worried, not for myself, but her. As I was reading into this HPV studies, etc. I noticed that oral and throat cancer can be caused by HPV. Immediately, my worry intensified.

At the end of May, I took a trip to Las Vegas, and on my last day there I developed a serious cold. My throat was sore, my sinuses were runny, then clogged, my body was tired, etc. This cold lasted for about 3 to 4 days, but I still had a sore throat for 16 days after the cold was over. The pain would switch sides from left to right.

Finally the sore throat went away. However, it seemed that right when the sore throat went away, I started to develop ear pain in my right ear. I figured that this was an ear infection, because I had been swimming in my pool a lot recently. With that said, I got OTC ear drops and started using those, to no avail.

I went to the doctors about 6 or 7 days after my ear pain, and they did a regular check on it, and told me that I had a slight ear infection. They prescribed me Amoxicillian and ear drops. I took those for 7 days, and the pain did not go away.

Let me also explain that the ear pain is not consistant, and it seems to get worse when I swallow. Also, if I close off my ear completely, and swallow the pain goes away.

After 7 days of the antibiotics, I went back to the doctor for a follow up and told them that I still had a bit of pain every now and then in my ear. She told me that she didn't see any infection this time and to continue using the drops. I did, to no avail.

Finally, I made an appointment with an ENT. I saw an audiologist first, and she told me that my hearing was perfect. I then saw the ENT, and he looked in my throat, felt around my neck, looked in my ears, and he also stuck is finger in my mouth and pushed on the back of my right side jaw, and it hurt like hell. He asked me if that hurt, and I said yes. He then pushed on the other one, and it didn't' hurt. The ENT did not explain why it hurt.

He said he couldn't find anything that would make my ear hurt, as their was no infection. He did say that my tonsils were enlarged. He looked in my nose and didn't see an infection there either.

I started to ask him about having throat cancer, and he said to me. If you were 60 or older, and drank alcohol and/or smoked, then we would do an endoscopy, but you being 29 years old, non smoker, non drinker, I don't see the need.

I have been to the dentist recently in June, and had oral cancer screen done by vesilite or whatever that light is, and that came back negative.

So in short, does this sound like something to be concerned about?


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Hi Atiguy - I'm so glad you found this forum! It really is the best place for up-to-date factual information. Being young doesn't exclude you from having cancer. It sounds like you've tried to do everything to get some answers. The best ENT to see, of course, is one who is familiar and experienced with treating oral cancer patients, however, the only way to know for sure if it is cancer is with a biopsy. If you were my son, I would be pushing for a biopsy. When my son was diagnosed with cancer, he was only 33 but his doctors did say that if it was HPV related, it would be a more successful recovery. I hope that for you it is NOT cancer, but if it is, you will have lots of support here from experienced people. Let us know what happens.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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Welcome to being a male in this day and age smile

80% of women in the US will have one strain or another of HPV by the age of 60 and like many of us caring, thoughtful, sensitive, and giving male lovers that perform oral sex, we're at risk for HPV related oral cancer.

My guess is that you've probably have had oral sex with several women in your lifetime that have been exposed to HPV in one form or another, unfortunately thems the statistic my friend. Now the upside is that you now know you have a risk factor and you should be diligent in making sure your immune system is in good shape by proper nutrition, exercise, and managing stress, and anxiety. If you have symptoms that concern you, which you have then you should go to a "knowledgeable" ENT to get them checked out.

That being said, don't go back to the ENT you just went to as he's obviously not up on the research that has been published since the link between HPV and Oral Cancer was established by Dr. Maura Gillison in 2000. Find an ENT that is up on the current demographics and symptoms of HPV related oral cancer, as you definitely would fit the age demographic as 60% of newly diagnosed oral cancers are HPV related, largely between the ages of 20-40, and are male by a ratio of 3-1.

Now the Visilight Oral Cancer screening tool will not detect HPV oral cancers, which are usually Base of Tongue or Tonsilar, which are hard to see due to where they are located in the mouth. As your tonsils are enflamed I would go to another ENT more up on HPV and have him check out your tonsils and scope you, insist on it. You are the patient, so be your own advocate and tell them what you need to get peace of mind on this.

Now, what I will tell you is not to freak out, we have a saying on these boards that "It's NOT cancer until a biopsy says it is". Also understand that stress and anxiety lower your immune system due to hormone response so just follow the steps I've laid out for you and keep us informed. Be diligent as you have a risk factor, but don't let fear rule you my friend, we are here for you.

Hope that helps, keep your chin up.

Eric

Last edited by Brian Hill; 07-31-2012 07:01 PM. Reason: changed date

Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
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atlguy Offline OP
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Thank you so much to the both of you!! One question, as I am not too familiar with everything, so it may be a dumb question.

What would I have a biopsy on? I don't see any sores or anything of that nature.

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You won't see it with your eye, that's why you would ask for a scope and for them to check out your tonsils.


Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
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Thank you Eric, I really appreciate it. I have been so scared over the last month. I have seen amazing posts by amazing people of this community and it truly is uplifting.

Is a scope and endoscopy?

Also with CT and MRI for this type of detection, do they normally inject dye?

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CT Scans, MRI's (with contrast) and PET scans are expensive and will only point out an area of concern to biopsy, they are not definitive in detecting cancer, as only a pathologist can tell you that after a biopsy is done.

We are here to help, and I agree that there are amazing, caring people on these forums...they are the reason I am who I am today.



Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
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atlguy Offline OP
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Thanks!

Also should mention that one of my nostrils is always clogged.

Anyways does an nasal endoscopy hurt?

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It was uncomfortable but nothing compared to having half my jaw removed and reconstructed by my fibula from my left leg, 37 radiation treatments to the head, 40+ lymph nodes removed via a neck dissection, a hole punched in my stomach for a feeding tube, neuropathy from the facial paralysis...I could go on but I think you get the point.

If it is Oral Cancer it's best to find it early so you have a better chance at survival and low morbidity rates for a better Quality of Life.

Don't worry about the small stuff...and it's all small stuff at the moment, let me know how the appointment goes and we'll go from there.


Last edited by EricS; 07-31-2012 12:39 PM.

Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
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Just get to an ENT that is current, as in informed on critically important information concerning his chosen licensed career!! It is possible (not probable) that your tonsils have become infected with the HPV virus. In the overwhelmingly great percentage one's immune system clears the most often repeated exposure to the virus during our lifetime. Never heard of a biospy of the tonsils to check for the presence of cancer. Usually they just take them out and then biospy the tonsils.


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.
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David - I would have thought the same thing about the biopsy - but it actually, it depends on which tonsils are suspect. In my husband's case, a biopsy, not a full resection was performed. Because of the vascular involvement in adult tonsils, even a biopsy is not taken lightly.


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.
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atlguy Offline OP
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Is it normal for the pain to subside when drinking fluids?

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You really can think annd worry yourself to death about this. Find an ENT that is familiar with HPV and have the scope done. That being said...Kevin's scope was fine, they didn't see anything. He had a HUGE lymph node though, like the size of an egg and I made them do an MRI. Are your lymph nodes ok? Find a doc to relieve your mind.
Keep in touch,
Kathy


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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As old as I am I'm amassed that I can still learn things. Thanks for that info Maria. When Moffitt suspected either my BOT or Tonsils as my Primary they put me under to find out and they told me that they were going to probably just take my tonsils, you know "cause we don't need them anyway". Well I woke up to my wife saying they found my Primary at my BOT and stopped before they took them.


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.
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I'm way older than you, David, and I am still amazed at how I am still learning things, especially here! I've learned it's really important to keep one's mind open in case something interesting or helpful can still get in there. No matter how dark things get, there's always a chance to find that light at the end of the tunnel!


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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Hey Guys,

Just wanted to give an update. I went the ENT today. I was told that I more than likely have TMJ, since most if not all my symptoms pointed to that. Makes sense, because when I went to the dentist not long ago, they said I should get fit for a mouth guard because they could tell I was grinding my teeth. The doctor looked in my throat and in my nose (said he didn't feel I needed a endoscopy), and also ordered some allergy testing.

Since my last post, I have been taking Prilosec, which has really helped my ear pain, because I do think I had a bit of acid refulx as well. The meds have helped me tremendously, the point where I go full days with no pain.

I have two dogs that also sleep in the bed, and both shed, which have contributed to my allergies as of late. The ENT said this could also play a role in the ear, and throat pain. He was pretty confident, and I didn't feel rushed. I was able to ask all the questions that I had in here, and he answered them knowledgeably. I am on my 8th day of Prilosec, and it's working so well. I think this pain will be resolved really soon.

Thoughts?

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So glad you are doing better ! wink


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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