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Joined: Jun 2011
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Hello, thank you in advance for taking the time to read this post. I have been visiting the site for over a month now, and am touched by the genuine care and support you provide for each other.

I am in need of everyone's advice. I am not going to go through the stereotypical "list symptoms and beg for diagnosis" bit, since I know the answer that I'll get, but let me give a quick backstory:

I am a 27 year old male. In decent physical shape, only with poor eating habits (lots of pizza/burgers/sweets, almost no vegetables). I have never smoked cigarettes but smoked a lot of pot with few breaks in between for the last ten years until stopping for good several months ago. I am also positive that I've been exposed to HPV since I have had oral sex with quite a few girls over the years being a single young man, meaning around 20-30 at least since becoming sexually active.

Last fall I noticed a sort of tightness under my chin, it felt like something was pulling my tongue towards my adams apple is the best way to describe it. It would throb off and on but it didn't diminish my quality of life or anything so I decided to wait it out. Over the winter, it either went away, or I stopped noticing it. Also, whenever I would take a hit of marijuana that one area would feel soreness when I inhaled smoke.

A few months ago, the feeling came back and was noticeable again. Mentioned it to dentist who couldnt see/feel anything, told me to go to my primary care who said the same thing and referred me to an ENT. While waiting for the ENT appointment, I noticed when I drank, ate something, it felt like something was stuck after, as if it was a foreign body in that one part of throat (left side). I freaked out, went to this website, went to every other website and convinced myself I had HPV throat cancer. Couldn't sleep/eat out of fear. Also started noticing new symptoms like ear pain, neck pains, but was poking at my neck quite a bit to try and feel something which might have caused the soreness, and the ear pain was something I had to think about to notice it (if that makes any sense), and was maybe a 1 or a 2 on a 10 scale.

So I got into my ENT appointment, was visibly scared, relayed my fears to him, and he didn't seem to take them very seriously. He did a visual exam with mirror to back of mouth, stuck his finger down my throat, and prescribed some strong Augmentin antibiotics. I was not satisfied with the visit as he kept telling me to relax etc. not worry about it. I took the antibiotics and after a few days, the feeling of something stuck in throat was gone and I could feel food and liquid hit it just fine, but that particular area (where something felt like was there before) was very painful when I would breathe through my nose and the air would hit it. After a few days, the pain got better, but I still felt strange discomfort.

Went back to the same ENT for a follow up, and this time he was more attentive, and did scope through the nose, and said that he didn't see anything that worried him, but I talked him into ordering a CT scan and he obliged.

I got the results of the CT scan, (CT WITH CONTRAST DYE) and it said that there was nothing unusual detected on the scan. When I went in for the scan they asked me if there was any palpable masses and I mentioned a lymph node that felt swollen on same side, and they put a sticker on it for the radiologist to note. He wrote that it was a 1cm lymph node considered normal.

So I was still not satisfied because I keep reading about CT scans missing throat cancer, and I knew that my ENT wouldn't change that so I did like you all say and called a cancer center: Mass general. They referred me to their oncology surgery ENT department and I had an appointment there today.

The ENT surgeon talked to me, looked at my scans, and scoped me a little more thoroughly than my first ent. I mentioned HPV throat cancer and he seemed to know that it's typically found in tonsils and base of tongue. After the scope he said he did not see anything bad, except some slight irritation from acid refluxing and perhaps some post nasal drip. He made a follow up appointment in 3 months.

But somehow I still feel like I am not satisfied. He said there weren't any other scans that could be done. I guess I just want to know what to do next, should I keep going to ENT's every week, or just accept this. Also, a lymph node near my groin has been swelling this past week which makes me think I have cancer and it has spread to my pelvis. I know this seems insane to anyone looking in, but I am just having a real hard time or it at this point. Any advice?

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Some folks will say to keep getting opinions until you are comfortable with the diagnosis. If you look at my signature below, you will understand the value and the quandary of second opinions.

Some people will say don't look for trouble if none is evident. But, we know our bodies and when something is amiss, we usually know it.

I would say to be watchful but don't let it consume your life. After having enough opinions to tell you you don't have anything to worry about...stop worrying. At some point you will need to, and be able to, trust your doctors. Life is too short to waste on unnecessary worrying.


Last edited by Sandy177; 06-07-2011 11:27 PM. Reason: absolutes are usually wrong.

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.
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Wow...I just read a novel....well done. Sorry that may have been an insensitive joke, I understand you're obviously frightened but let me try and talk you back from the ledge a bit. Reading your post I think you've wound yourself up a bit.

Let me applaud you for taking all the right steps and being thorough, you have to be your own advocate, I firmly believe that. However there has to be a point if you've seen a top notch medical professional that you take their opinion and pet them ease your mind my friend. Mass General is a great facility with a well respected otolaryngology dept, if you can't take their opinion then I'm not sure where else you could get a much better one.

Keep vigilant of course if you have risk factors but it sounds like you are letting worry take over. PET scans and CTs have a fairly low false negative rate and you've had great medical opinions so let your mind ease and don't let worry win.

Good luck

Eric


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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...if it does turn out you have oral cancer, this is the best place for information and understanding. There is lots of care and support here. And, part of the care and support goes towards putting fears and worries to rest.

Wishing you peace,

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.
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Oh... hittin the ganj can cause paranoia and you should vaporize not smoke it, you use less and get more...


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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Did the ENT prescribe anything for the acid reflux? There are plenty OTC ones that you might try and see if that irritation goes away.


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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Thank you guys for the responses. Eric, no worries; I think you're the man, and as a matter of fact am actually currently working on a real novel.

As far as pot goes, I'm done...if I decide to ever do it again, it'll be a vaporizer.

Sandy and David, thank you for your responses as well...I am more calm after seeing the doctor, but I don't know if I'll feel back to normal until my throat irritation disappears....

David, we didn't discuss reflux meds, but I am going to be changing my diet accordingly, it's high time to do that anyway.

I guess what I am wondering is: if I am feeling these symptoms, and many people don't even feel anything before diagnosis (aside a swelling on neck), would two trained ENT's, one of whom is a cancer specialist, both instructed on what to look for (HPV throat cancer tonsils/base of tongue) be able to pick it up?

I also asked the doc if HPV throat cancer always presents itself on the surface and he indicated yes...

As I type this, I am thinking that I want to apologize for wasting everyone's time with this. People on this forum have been through a lot, and I don't want to take advantage of people who have had their lives affected so dramatically, but I just feel like you're the ONLY people who would understand...

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No need to apologize as far as I'm concerned. Actually it was a welcome change of pace for me to read about someone who actually got a CT scan and not one but two ENT exams instead of just ignoring possible symptoms of oral cancer and then get an all clear. We really are sorry when we have to welcome someone to our oral cancer club.
My advice is to RELAX . This cancer is terrible but mostly because we don't catch it until it's very advanced. Like Michael Douglas said in his interview, Stage IV is not what you want to hear. Get a CT every year, if you have a tumor, it will eventually grow enough to show. I have never heard of a CT/MRI scan missing a tumor large enough to cause trouble. PETscans, yes, but CT/MRI no.
We certainly understand your fears, and I hope this has all been a false alarm for you.
Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
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You really might want to take something for Acid Reflux. I had the same feeling in my throat I thought I had throat cancer too. My Surgeon at Moffitt Cancer Center put me on Nexium for Acid Reflux. Within 2 weeks that awful feeling was gone. First I tried over the counter it didn't work for me. I'm still on Nexium and I will be on it forever. I don't want that feeling ever again. Look Acid Relux up on the computer. You'll be amazed what you read about it and what it can do.

Hope everything works out for you. I'm glad you don't have Oral Cancer.

Take care,
Connie


SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.

CT Scan 9/11 clean, CT Scan 9/12 clean


Moffitt Cancer Center in Tampa, FL. A+.

My hometown Lockport, NY.



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Man you guys are so great for answering my questions. Coming to this forum makes me feel like I know you guys personally...btw, Eric and Charm, what is a "frack"?

Connie, thanks for the advice, but I am wondering can reflux be mostly on one side? I feel stuff on both sides, but one has a very distinct feeling of "damage"...like sometimes when I breathe in, that one spot on the left feels inflamed. Also what drives me crazy, is why would I get a reaction to the strong antibiotics if it was reflux....

In any case, I am changing my diet, I have eaten basically the worst food possible for years because I have a high metabolism and stay fit even on a bad diet but this is ridiculous.

Charm: the reason I went through everything before posting was (I'm sure) one of the main reasons this foundation and forum was created. Thanks to Brian Hill, and all of you, I had a resource and knew from prior posts what steps to take (ENT, CT, Cancer Center) before trying to get ya'll to diagnose me.

I still can't shake this feeling of something being seriously wrong but I suppose I'll see what happens for now. I do feel some slight shame for asking for so much attention from everyone who has already been through, or going through the wringer with OC. But also grateful for the kind replies. You are all so smart and dignified about it all...

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