Hi, everyone. I joined some years ago to find information about HPV+ OC (probable oral exposure and confirmed cervical exposure in 2005, hrHPV+ cervical lesions persisted, spread, necessitating cervical ablation in 2008).
Shortly after my last post, I relocated to Baltimore for work. I saw an ENT at Johns Hopkins who is very familiar with the HPV-OC connection. She put a scope with a camera down my throat and said everything looked fine. She recommended no treatment, no oral HPV test, and basically told me to forget about it and live my life. I took her advice with great gusto. I think I've looked in my mouth a grand total of 3 times since I last saw her in May 2010.
I later relocated back to my hometown in the south. I've been having TMJ symptoms and a few months ago, woke up in pain and locked at a 1cm opening and could barely eat. Dentist rx MRI which confirmed TMJ disc displacements bilaterally, which was already evident clinically.
MRI also showed 13mm x 9mm lesion in or near right parotid gland. Actually, radiologist 1 missed it completely maybe because the order was specific for TMJs and nothing else. Radiologist 2 said lesion in parotid gland. Radiologist 3 says lesion not in parotid gland but in lymph node.
Initially the local ENT said it was nothing and wasn't going to evaluate further, but his nurse called today and said based on his conversation with radiologist 3, he's sending me for an ultrasound.
Next up: parotid gland ultrasound within 10 days & repeat in 4 months. Local ENT says I'm much too young for HPV-OC (I'm 31). I will mention that is the same ENT I have seen since age 13 who dismissed the HPV-OC connection in 2008, but changed his tune in 2011. Oh well. At least he is aware of the connection now.
Questions: given my HPV history, is there anything else I should do in terms of testing? Is it time for a second opinion or should I just sit and wait for ultrasound results? I'm back in the hometown where the closest major medical center is 5 hours away so I'd have to plan accordingly and in advance. I'm not as up to date on the latest HPV-OC news but have there been new, more effective screening methods than scope down throat? Should I find a dentist who offers the HPV test?
Thanks so much.
There is so much info about HPV located on the main pages. Also if you put HPV into the search bar you will find many, many posts with in depth info about HPV.
As far as I know, dentists do not routinely do HPV tests. Only a very small percentage of people who are HPV+ in their throat area will go on to ever be diagnosed with oral cancer. There is no known link between cervical and oral HPV+. I am sorry to be the one to inform you of this but no, you are NOT too young to have HPV+ oral cancer. I have seen several patients under the age of 30 that have had oral cancer both HPV+ and HPV-. Obviously the local ENT is not up to date with their information!
If you want to get to the bottom of what the lesion is, get it biopsied. That will give you a yes or no answer if it is cancerous. If it would be cancerous, it must get treated.
Hi there I totally agree with Christine. Get it biopsied it can't hurt and might just save you if it is cancerous. Take care and good luck!
Totally agree and then go to a cancer center with OC experience!! I have been getting the run around too. It's VERY frustrating. Be your own advocate and get pushy if you have to.
I see you're in Florida get in touch with a Cancer Center Moffitt Cancer Center in Tampa. Check out their website. Don't wait on this it's an agressive cancer.
I agree with KP5.
Hi,
I am not sure you have been getting the best advice. Biopsy or fine needle biopsy is the only way to know. Yes it is invasive, that's why they do not like to jump into it, but it seems to me you are at that point. I agree with everyone else who has posted. You need to get with the experts. Moffitt in Tampa is highly recommended. Christine is right; you are not too young for this. It is highly important.
Best,
Anne
Thanks, everyone. Today I pushed for an ultrasound asap. They will try to schedule this next week but wouldn't rx an ultrasound-guided biopsy, so I think I'll have to travel (again) if I want that.
I know I'm definitely not too young for HPV-OC. When I went to JHU, obviously the entire otolaryngology department knew about HPV-OC and did not waste time lecturing me about how there was no hard evidence of the connection. Part of the problem is where I live; doctors here are all in private practice, not academic research, and slower to catch on. I should credit my ENT in that he is a very prominent local physician and head of the older, established hospital in town. But this is a very small community and to change doctors means to change cities.
I think I will look into Emory because I can stay with people there whereas I've no place to stay in Tampa. How odd that I worried about HPV-OC before, was told not to worry, and years later my jaw locks and this lesion is discovered by accident. I'd no idea it was (is) there or how long it's been there.
Has anyone heard of a head & neck MRI or ultrasound to screen for OC since it so often presents in late stages and/or with node involvement? How about oral HPV test? Everyone always says "early detection" but is there something more thorough now than the "look in oral cavity and use the scope?"
Thanks.
Yes, there is a biopsy. Doing a fine needle biopsy on a lymph node, if in fact it truly is in a lymph node, is not really very invasive. I said biopsy is invasive in my last post, but a fine needle biopsy is not invasive like a biopsy of a lesion on your tongue for instance. If they are doing an ultrasound, they should do a FNB if there is an enlarged lymph node where there is no reason for one.
There is no other definite test for OC. HPV is something they will determine later, from pathology. CT scan is usually done to catch things, but not again not definitive. So forget the ultrasound, MRI, oral tests. It would bother me that you have push for these things. You could always get an appointment at Moffitt for a second opinion, then determine later where to be treated IF necessary. (not shouting, just want you to realize there is still an "if" there) But, seems to me like your local medical personnel seem rather unconcerned. Can you politely inquire of them how many OC patients they treat?
Best,
Anne
Hi there everyone here has given good advice - I am not sure what an ultrasound would tell you -as far as I know that's no ta diagnostic tool they use for oral cancer - I can tell you there's a lesion (which you already know) MRIs are used after a confirmed cancer to look for possible mets, Same with cts and pets - however they also highlight healing, inflammation, infection etc.. Only a biopsy will tell you for sure - have it done even if you have travel.... good luck!
I agree...You need an MRI, not an Ultrasound. Not a Dr though, but....feel like some of us could be close sometimes!! LOL...Really, you HAVE to say I need it now. Be persistent and remember that this is your LIFE you are fighting for. It is very aggressive and needs to be caught above your collar bone. At least that's what we were told. The Dr's had played around with us so long that when we saw the oncologist for the first time he was really ticked. He literally said "where the hell have you been? You had your first T on June 3rd and I am seeing you on July 23rd?" I told him that we had been following protocol. He caught the sarcasm and said "well, I hoped you haven't followed protocol right into an incurable situation. If this is in your lungs, it's game over." Kevin said "game over like I'm gonna die?" Doc said "game over as in I will not be able to cure you." We panicked until after the high resolution CT of his chest, which thank goodness came back clear. Another couple of weeks and we would not have been playing the same game we are playing. It had traveled soooo fast in the month and a half they dinked around. DON'T procrastinate with this!!!! Yes, I'm yelling!!! But only cuz' I care!! ;o)
Kathy
Not only are you NOT too young for HPV+ OC, but you are not too young for HPV- OC (such as mine). I was diagnosed at age 37. I never smoked. I can't remember the last time I had a drink...I don't drink now and when I did, it was on rare occasions. Medical anomalies happen more than you think.
THE ONLY DEFINITIVE WAY TO DIAGNOSE A LESION IS VIA BIOPSY! Don't waste time with ultrasounds. Get pushy and advocate for yourself. This is your life and you ARE far too young to lose it. Yes, I'm being blunt and bossy, but it's because I care, too! We all do, otherwise we wouldn't be here.
Hopefully, this is nothing serious and you can move on with your life. That is my sincerest wish for you.
Take care and I'll be thinking of you,
Kerri
Thanks, everyone. I think the reason for the ultrasound is to evaluate the density (apparently, you can guess what it might be based on its ultrasound properties like whether it's hard to soft, etc...although I'm not a fan of medical guesswork). Also, if they ever biopsy it, they will use an ultrasound (especially since right now, the radiologists don't agree on where the lesion is, and I really don't want them to hit the wrong place).
Unfortunately, they refused the ultrasound-guided biopsy and told me they already booked a repeat US and appointment this fall, but that's too far away for me. So, I booked an appointment with a major medical center. I'm seeing an ENT/H&N surgeon who's supposedly familiar with the HPV-OC connection, so in addition to evaluating this parotid/lymph/whatever issue, I'll be asking him for a full OC examination. I'll have all my records so perhaps they'll let me get the biopsy there.
I know I'm definitely not too young for OC, irrespective of HPV status. The difficulty is in getting my physicians to listen and take action! Even mentioning it causes them to dismiss me as a paranoid hypochondriac (I hate that label as it pretty much ensures you don't get properly evaluated). Does anyone have any tips on how to get a doctor to listen and take you seriously? I thought about taking medical literature from this site but was advised against that. I didn't have this problem at Hopkins because they were already well-versed on the latest.
Has anyone here had a core needle biopsy? I read it takes a bigger specimen, gives more information, and is more sensitive than a FNA/FNB, but that it has a higher likelihood of spreading cancer or tumor cells elsewhere.
I really appreciate everyone's feedback. Thank you.
Yes, that was how they did Kevin's. They took 3 punch biopsies of the huge lymph node. They tested it right away and when the lab person came back in she said "You can do another one if you want, but I have what I need." I knew then what our answer was going to be. They wouldn't know negative in 15 minutes.
I'm glad you are going to a specialist. When did you get the appt? Keep in touch with us!
reverie wrote:
"I thought about taking medical literature from this site but was advised against that. I didn't have this problem at Hopkins because they were already well-versed on the latest."
I had a notebook with my questions. I printed the appliable pages of the NCCN Guidelines. If I were doing this again (and I sincerely hope I will not!) I would also include a calendar for planning purposes and appointments.
ChristineB collects everyone's card and attaches them to the notebook.
If you have your questions written down (and room to write down the answers) you will be - and look - more professional. The NCCN Guidelines got me instant credibility with the MO and ENT.
Personally, I would be very wary of any doctor who treated me as dismissive when I would raise my concerns to them. If your physician acts like this when you are asking about a potentially serious and dangerous medical situation then its time to get a new doctor. I would also suggest you call your insurance company and advise them of the caliber of doctor you have visited. Im glad to hear you will be seeing a doctor who is familiar with HPV/OC patients. Here is some more detailed info about HPV and cancer.
HPV and OC NCI HPV info The rule goes, if you have a sore in your mouth for over 2 weeks then its time to get it checked by a professional. The sores you have should be checked and a tissue sample taken so you get a definitive answer.
Maria is right about what I do with business cards. I collect one from every single doctor I visit and staple them to the back page of my notebook. I write down all my questions and their answers in the notebook. Since I have every doctors business card, I can always find the specialist I need easily even if I have only visited them once.
Good luck with your appointment.
Another alternative for those business cards is the plastic sleeve pages that office supply places sell with slots for each card and punched for a three ring binder.
I too kept a notebook with tabs for different subject matter/doctors and those pages for business cards and carried that with me to every doctor's appointment. As you all know, each appointment with a new doctor requires the patient to fill out forms and provider/insurance information, so if you have your notebook handy, no need to look up phone numbers, dates, policy #s, etc. It was a life saver.
Deb