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So, being someone who has dealt with a "mild" cancer (stage 0 melenoma, spitzoid type; not caused by sun exposure) myself, I know how frustrating hypochondriacs can be, especially to cancer forums. Thus, I would like to start by saying I promise I am not one of those people who worry about every little thing, and this post is more or less just an uncertain post. If anyone understands the fear of uncertainty, I'm convinced it has to be fine brave people such as yourselves. I can certainly understand the "problem" with posts began by those who have not actually been diagnosed. I will start by saying that I am merely 20 years old, and have been dedicated to studying cancer, particularly pediatric, so I know more than any 20 year old should because I am quite passionate about this disease and study outside the classroom as much as inside. I attend UNCW (junior) in Wilmington NC, and am in the midst of having another cancer scare, this one, of course, cancer of the oropharynx. My story begins a few months ago when I had a bad spell of what seemed to be tonsillitis, in which I nearly completely lost my voice. The infection seemed to clear itself (I'm not one to go to the doctor because I always think I can diagnose myself :p), that is until it recurred, twice. Around the second recurrence, I noticed a small area directly above the palatine tonsils where a large crypt is located (on the tonsillar pillars), that seemed to be getting "infected". Well at some point within the next couple of days the small oval shaped area swelled up into what looks like at some angles a lesion, and merely an area of localized inflammation in others. What I do know is in this area of inflammation there is one large crypt and smaller less "deep" crypts, giving the idea that the crypts could be trapping bacteria. I saw my GP about it and he seemed to pass it off the first time, however upon this last visit he said it never hurts to get a second opinion, from an ENT, and gave me a choice to receive a referral if id like. I opted to get a referral, and I will see the ENT this Friday. Well in the mean time, I couldn't help but engage with a professor in a little HPV+ Head and Neck SCC talk. This was really a bad idea needless to say because I learned that the tonsillar crpyts are typically where malignant transformation takes place when the HPV 16 virus is present in SCC. My only other symptoms are mild discomfort in that specific area of my tonsil from time to time, no node involvement or anything like that. Just as a side note I did recieve a guardasil treatment when I was 17, but this past year I was in a sexually active (yes "orally" as well; tmi right?) relationship with my now ex girlfriend who later informed me that a relatively short period of time before we were sexually active together, she recieved a dx of dysplasia (cervical precancer) in her cervix. Before we became sexually active her doctor said she got clear results, meaning the infection was dormant at that time. So I just want to get an idea of the kind of symptoms that some of you HPV Positive folks had prior to an actual pathology report following a biopsy. I cannot begin to stress how grateful I am for any responses I receive, and I am sorry for the long post, but I just thought that this was the most informative answer I could get on the clinical symptoms of HPV+ tumors, since this seems to be such a grey area (even medical university professors seemed somewhat stumped on the clinical presentation of this disease). Ok I will stop typing now, being someone interested in the medical field it is hard not to elaborate to the best of my ability on everything!

Thank you so much everyone!

Josh


Yet to get DX. In process of finding out what is "wrong". I know you brave souls are tired of seeing these "worried" posters, but I promise I'm not a hypochondriac. At least not yet!
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Just as a side note, I know how ignorant it is for someone to post on a site where there are people fighting for their lives, and people who have previously fought for their lives, and not follow up after they find out what is (or is not) wrong. As a "guest" on this forum, I promise I will follow up when I see the doctor, and I will continue to follow up until a definitive diagnoses has been made so that no one is left in the dark, and whether or not I get a cancer diagnoses, I will contribute with any of my own, or my professor's, medical knowledge I can provide for anyone, from time to time, even if cancer is not the diagnoses.

Last edited by joshuaericlee; 09-22-2014 11:50 PM.

Yet to get DX. In process of finding out what is "wrong". I know you brave souls are tired of seeing these "worried" posters, but I promise I'm not a hypochondriac. At least not yet!
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Often HPV+ OC patients experience no symptoms at all which is why they are diagnosed not until the cancer is in its later stages. Common minor ailments such as an ear aches, cough, feeling like something is stuck in the throat, difficulty swallowing are all signs that you should get checked out. It can take many years for HPV to turn into cancer and in most people it will clear itself before this happens.

It sounds to me like even though you are young you are knowledgeable enough to advocate for yourself. Do not let the doctor dismiss your age without giving you a thorough exam.

Best wishes!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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Good luck Friday. Hopefully it's nothing serious.


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
Joined: Mar 2014
Posts: 286
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Josh why do you call this a cancer scare? It isn't. You have a number of symptoms that you have taken to a GP. For a range of reasons he does not think its cancer, but has offered you a referral to an ENT. The ENT will probably say the same thing, but offer to do a biopsy, which is the definitive way to diagnose it. But really he's not diagnosing it, he's excluding it. Doctors don't pass off serious illnesses lightly. There are many many factors they have to take into consideration when doing a diagnosis. We're not physicians here, and I wouldn't even hazard a guess what your problem is. But I'd bet my bottom dollar it wasn't because you had oral sex with a girl 3 years ago.

No you're not wasting our time, but I want you to understand something about serious illnesses. If seriously ill people Googled their symptoms and spent the night pondering "what if its this" they would quickly have a mental breakdown. Google is very good for helping you understand what a doctor has told you. It is not good for diagnosing things on your own.

A really serious illness is a complex series of steps. Examinations, biopsies, MRIs, bone scans, PET/CT scans, and thats just the diagnosis. Then the treatment nightmare begins, and that can last for months or years. Then if they fix it you have a lifetime of followup tests and fear of recurrence.

So how do we deal with something so big? Break it down into steps. The next appointment, the next scan, etc. Always focus on the next step. Understand why you are there and what you expect to get out of it. For you the next step is the ENT. Hopefully, the steps end there, and you leave with a definitive diagnosis and peace of mind. If there are more steps, please try to let the medical investigation take its course. By all means research and understand the steps that are going on, but take great caution speculating beyond that.

Good luck on Friday, we hope its nothing serious but let us know how you go.


Cheers, Dave (OzMojo)
19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil.
31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014)
11August2014 PET/CT clear.
17July2019 5 years NED.
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Thanks for your responses everyone, and best of luck hopefully everyone is well. I saw that directly after my post someone else posted asking about HPV positive carcinoma stating they were a "teen with questions" which sounds like the typical hypochondriac which I was trying to avoid coming off as. For this reason I have decided to thank you people for your time and rest my case until a definitive diagnosis is made. I try to stay away from google for that specific reason, and being a new guy studying some medical, it truly doesn't help to know some of the things I have known. While I know typically HPV+ SCC would not be considered "pediatric", it is still one of those things that peak my interest because it is a virus that is now KNOWN to cause virtually all cervical cancers, and now the majority (if not most all, with some exceptions) oropharyngeal cancers, particularly tonsillar. Anyway's I will keep those who were kind enough to reply posted. I'm gonna try to push for an excisional biopsy of the area because even though the chances of this being cancer at 20 years old are very miniscule, it is still technically possible. At any rate something is there and is causing me some mild symptoms. Anyways thanks for all your responses, until next time and best of luck! May many blessed, disease free, years be in your future!

PS I know it's unlikely that someone who as of right now officially does not have cancer can help, but like I said let me know if I can in any way.

Thanks again,

Josh


Yet to get DX. In process of finding out what is "wrong". I know you brave souls are tired of seeing these "worried" posters, but I promise I'm not a hypochondriac. At least not yet!
Joined: Sep 2014
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At your age, you most definitely do not have HPV related orapharyngeal cancer. HPV cancers take a long time to develop. And, the virus likes to hide in the squamocolumnar junction. This is found on the cervix, but usually not other places. That's why you hardly ever don't see HPV related skin cancers. It can happen, and does, but it is rare. Also, since you have had the HPV vaccine, I highly doubt you have HPV related cancer. Even one shot of the Merck vaccine has been shown to provide immediate protection.

Stop stressing. You're fine.


40 y.o., undiagnosed, spitting up blood past 4-5 months at random intervals, several enlarged lymph nodes under chin and neck, biopsy of one showed benign viral lymphadenopathy. Still being monitored by ENT.
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newpatient, you might want to search for HPV in the main OCF site. Your information is far from accurate.


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023

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