Previous Thread
Next Thread
Print Thread
#135274 06-13-2011 09:18 AM
Joined: Jun 2011
Posts: 2
cate99 Offline OP
Member
OP Offline
Member

Joined: Jun 2011
Posts: 2
Hi everyone--

Am new to the forum and would appreciate your thoughts, as I'm rather anxious about my situation. I'm 29 and have had a sore throat for two months now. My sore throat began in late April, and I noticed some tenderness in my submandibular lymph nodes. I also have some jaw pain and some pain at the floor of my mouth.

I made some bad decisions over a two year period (2009 to 2010), which involved some heavy drinking, "social" smoking, and some other behavior that has resulted in my having HPV. Since then, I haven't smoked and I drink occasionally, but otherwise eat healthy, exercise, etc. Having HPV, however, has really put me on edge, especially given the recent spate of coverage in the media on HPV and oral cancer.

What's been happening thus far--

Mid-May: I Went to an ENT who scoped my nasal cavity and felt my neck. He said I looked perfectly healthy and that I should come back in a few weeks if my throat was still sore.

6.8.11: My throat was still sore, if not a bit worse, so I went to the same ENT who used a tongue depressor to glance down my throat. He was extremely dismissive, said I was perfectly normal and acted as if I were a hypochondriac looking for things to be wrong with me.

At some point within the last two weeks, I started noticing that my teeth on the right side of my jaw felt a little loose. I also started having soreness/pain on the right side of my jaw.

6.10.11: Saw a different ENT, who used a tongue depressor to look down my throat and said I looked fine except that my tonsils were slightly inflamed. He prescribed me antibiotics.

Since my last visit, which I realize was only a few days ago, my jaw soreness/pain has gotten considerably worse and my throat is still sore.

I guess I'm frustrated because the last two ENTs that I've seen have seemed to indicate that I haven't had my symptoms long enough and that I was overreacting. I'm hoping that whatever I have isn't anything, but I'd think that they'd want to catch something early, rather than waiting until my symptoms got so severe that they required more serious treatment. So I guess I'm wondering, how long does this need to go on before I can ask for more tests, e.g. a CT-scan?

Current/ongoing symptoms:
-tight and sore throat
-right ear, neck very mild pain/tightness/fullness
-tender/sore lymph nodes on right side of neck
-tender spot behind right earlobe/jaw
-pain on right side of jaw
-teeth feeling a little loose on right side

Two final questions: first, what's the best test for determining what kind of HPV I have? I read through some earlier threads, but got slightly confused as to what's offered for cervical v. oral HPV testing, and general HPV testing v. testing tumors for HPV. Second, I assume that I have exposed my partner to HPV (he and I are monogamous)--should we avoid kissing/oral sex, or even vaginal sex without a condom, or will it not make a difference at this point? He is the most wonderful, understanding person (we're planning to be engaged soon), but I am devastated that I have brought this to the table.

If you couldn't tell, I tend to overthink and worry about things--every Google search I've done of my symptoms leads me to oral cancer--so all information/advice would be much appreciated.

Thanks so much,
Cate

Joined: Jan 2009
Posts: 1,844
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Jan 2009
Posts: 1,844
Cate,

In my expert opinion I think you should avoid all physical contact with people and wear a hazmat suit 24/7....no not really I'm messing with you.

80% of women will have one strain or another of HPV by the age of 60, god knows what that % is in men but I'd wager its higher. Strains 16 & 18 are the ones to watch for however just testing + doesn't automatically mean you will develop oral or cervical cancer from them. What it does mean is that you should be vigilant in getting regular checkups and looking for early warning signs.

If you are unsatisfied w/ the opinions of the ENTs you've seen, get an appt w/a Cancer Center nearest you and request a PET scan or CT and see if there are any suspect areas to biopsy. A biopsy is the only way to determine if you in fact have cancer.

Good luck and don't let worry overcome you, just stay vigilant and keep on top of things if you have risk factors. Even if it is cancer it isn't an automatic death sentence especially if caught early

Eric

Last edited by EricS; 06-13-2011 10:33 AM.

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.
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Likes: 3
Hi there! What Eric said is true - try not to freak... And bad choices don't necessarily lead to HPV - you could get it with your first and only lover... Depending on his/ her history. Your fianc� may also have HPV unrelated to you. It might be good to have it checked.

And if the situation persists do go to a cancer hospital and have yourself checked at their head and neck clinic.

Good luck,,, you do know if something's wrong so be persistent until you get answers.



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
Joined: Jun 2011
Posts: 9
Member
Offline
Member

Joined: Jun 2011
Posts: 9
Your symptoms sound awfully similar to mine, and I've been to 2 ENTs, had a CT scan and went through a cancer center's ENT surgeon, all who found nothing.

Have you ever looked into LPR, or silent reflux? This is what one ENT told me this might be. Also, the neck pain might be from you poking at your lymph nodes all day, which is what I was doing....

That being said, like you I am still not satisfied with my diagnosis, so I will keep pursuing this until the symptoms disappear or I get an answer I am satisfied with...

Also, this might have something to do with allergies, as they can do weird things to your throat.

I agree with Cheryl, go to a cancer center just to be on the safe side...

Joined: Jun 2011
Posts: 2
cate99 Offline OP
Member
OP Offline
Member

Joined: Jun 2011
Posts: 2
Thanks so much everyone for the prompt replies! I really appreciate the advice, and am doing my best not to get myself worked up.

Eric: Humor is always appreciated smile As of now, I don't have anything (I think) to biopsy--no lesions or bumps or lumps--I will check though, and also ask for a CT scan.

Cheryl: Thanks for your reassuring words. It's been difficult for me to deal with the HPV issue, in part because I didn't drink, smoke, or do much of anything for the longest time, and I look back with a lot of regret. But God knows I need to stop dwelling and look forward...

Figuringitout: One of the ENTs did ask me about both reflux and allergies. I don't think either is the case, but you're right--I have poked at my lymph nodes a bit.

I just called the Lombardi CCC at Georgetown and made an appointment for next Tuesday with a doctor who specializes in head and neck oncology, but the nurse called me back and said she'd made me an earlier appointment with a different doctor in the same office because that was the more appropriate doctor for me to see. I just looked up the new doctor, however, and I see that she specializes in voice and swallowing disorders and not head and neck oncology/surgery. Am thinking I should try to change my appointment back(?)...

Also, if there's anyone on here who could answer my HPV specific questions, I'd really appreciate it. The research I've tried to do on the Internet just seems to muddle things even more.

Thanks again everyone!

Joined: Jan 2011
Posts: 571
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: Jan 2011
Posts: 571
Hi Cate,

Unless you are HPV active, I don't think you are contagious. A positive HPV screening means that you have contracted the virus in the past...not that you have an active case of it at the time of the test. It's like when a person doesn't know what their immunity status is as it pertains to vaccinations. A titer can be done to determine if someone has antibodies to specific diseases which would determine what vaccinations are required. For example, if you had either the vaccination for measles or the actual illness, it would show up in the titer results.

Someone can have a long relationship full of various bodily interactions and not contract HPV from their partner. Many of us here have been in long, monogamous relationships and one partner is positive but the other is negative. Please do not feel bad. No one is usually able to pinpoint from whom they got it, it is a prevalent virus, and judgements shouldn't be rendered because someone was lucky enough to avoid it or unlucky to get it. Abstinence is great, but, it isn't always what happens in real life.

Since you tested positive, please be vigilant and go to your yearly check-ups. Paps show abnormal cell growth but the HPV screening is a good compliment to it and will keep your doctor on his/her toes. Early detection is critical and cervical cancer is highly treatable when caught early. Also, when caught early, infertility is less likely to be a problem.

Until you have your appointment, try to settle your mind and distract yourself. I'm like you, I'd look for whatever I could get my hands on regarding this stuff. But, at some point, I realized I was staying up late reading the same thing over and over again. That's when I figured it was becoming obsessive and unhealthy. I tried to focus on something else I was interested in researching and lose myself on the computer doing that. You could also try limiting the amount of time you will devote to thinking/worrying about it--say...15 minutes a day. When time's up, force yourself to think about something else.

Many times we worry for nothing. And, since worrying is a major contributor to illness and premature aging, you don't want to have a self-fulfilling prophecy here. In addition...you don't want all that stress ending up on your face permanently and showing up in pictures on your wedding day!

Do all you can to set your mind at ease. And then, if there isn't anything wrong...rejoice! And, live! Life's too short to spend feeling like something is wrong or worrying about it.

Hugs,

Sandy


Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
Joined: Jan 2011
Posts: 168
Senior Member (100+ posts)
Offline
Senior Member (100+ posts)

Joined: Jan 2011
Posts: 168
Hi Cate: I was diagnosed with cancer in December. The biopsy on the enlarged lymph node (where the cancer metastasized) showed that the tumor was HPV+ (strain 16). I asked a lot of questions of the docs at Bay State in Springfield, MA (where I was treated) and at Dana Farber in Boston (where I went for a second opinion). All the docs were great about reassuring me that 80% of the population has the virus and that only 5 lifetime sexual partners are needed to be "at risk" for the HPV virus. (Not many for our generation.) My partner and I also asked the docs about our future sex life, could we keep on as we always did or do we need to change any behavior. We were told to keep on as before. We were also told that when they deal with partners they always assume that both have the virus. They also advised that we have annual pap smears as we may be at a higher risk for cervical cancer (as 40+ lesbians we have only been having paps every other year). Oh, one more thing, should my partner and I ever separate, the doc said we should disclose to a new partner our HPV status. I hope this answers some of your questions. Don't let the HPV status make you feel bad about yourself and your choices. A virus is biology and has nothing to do with morality. Good luck. I hope you will stay in touch and let us know how everything goes. -Michelle

Last edited by Michelle Ann; 06-14-2011 09:58 AM.

SCC left tonsil, stage IV, HPV+, metastatic to one lymph node. Biopsy 12/23/10; tonsillectomy 1/13/11; DX 1/25/11; Peg in 1/28/11. Peg out 6/29. TX 1/31/11-3/21/11: 35 IMRT plus 3 Cisplatin. Pet-Scan 6/20/11 = CLEAR! Three years out, learning to live with the long-term side effects of radiation while reminding myself to feel blessed.

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
Topics18,166
Posts196,921
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