Hello,

I am a female in my mid-20s. I was very sexually active while I was in college and was later diagnosed with high-risk HPV. Around the time of diagnosis, I had also noticed that orally, I was experiencing swelling around the bilateral glands (salivary) and some sore throats during the course of the past 3 years. I had leukoplakia on the bottom sides of my tongue, which my ENT biopsied and came back negative. This occurred about 1.5 years ago. Four months ago, I had my tonsils removed as they were chronically inflammed. My ENT had them biopsied as well and the test came back negative. Prior to the surgery, I had a CAT scan which showed the lymph glands in my neck were large and inflammed. It could have been an infection at the time, but I had another CAT scan done this past month which showed the bilateral glands were inflammed. My primary ENT also had my CBC bloodwork and he did not see any issues.

After my tonsils were removed, I noticed that there was a patch at the base of my tongue that was very irritating for me. Every ENT that inspects me notices that my throat and back of oral cavity are red and inflammed. The "growth" on the base of my tongue does not hurt but I definitely have a lump/patch growing that gets in the way of me just being comfortable throughout the day. I have had three ENTs look at it. The last doctor I saw was a surgeon who specialized in oral cancer and he said he saw nothing on my tongue but was willing to biopsy the lymph nodes in my neck, which are large enough to be considered borderline but he "does not suspect I have cancer". I will see him again in two weeks. In the meantime, I saw a dentist last week and I had him do a thorough check of my oral cavity. He said that he saw a lesion blocking one of my salivary glands and that it was very tiny but he will do the oral brush cancer test in one week "if it does not pop".

I have tried my best at seeing as many specialists as I could and I know that all the symptoms I have are connected, and not just separate issues. I am not bothered as much mentally as I am physically. Since I have dealt with these unresolved issues for some time now, I feel like I prefer to get to the bottom of this, regardless the outcome. I have had a history of HPV (not diagnosed in the oral cavity yet), a history of leukoplakia and a lesion growing on my salivary gland. They are not sure what is growing at the base of my tongue yet.

My only question is - what next? I will have my surgeon needle biopsy my lymph gland and the dentist test the lesion blocking my salivary gland but that does not resolve the growth at the base of my tongue or explain why I have not been feeling well these past two months (occasional headaches which are rare, fatique). Is there anyone that you know in New York who is a good enough doctor to fully examine me given the fact that I do have a risk factor? If the doctor is aware of the HPV connection, that would be extremely helpful. If I do not have cancer, I would like to see that I can prevent it. But with doctors who are not thorough, no wonder we are left with problems at a later stage rather than focusing on preventative measures.

Thank you in advance for all your help,

Ilana

http://health.usnews.com/sections/health/best-hospitals

this link is to a list of the best hospitals in US.
I would call one closest to you, and ask them where to go to seek help. Short of that, you are the patient - tell them what you wish for them to do. This was you are not left wondering.

The good news is, you have had several tests showing negative and oral cancer is actually quite rare, and a diagnosis of HPV does not signal an instant connection as very few strains are known to cause cancer... So, I would not panic but you do want to follow through and ensure you and thoroughly tested if you have troublesome areas you are concerned with. It does sound like they are doing the needed testing here soon for you though.

And ... don't become too overwhelmed. When we get freaked out, we will see everything we feel as a symptom - this is normal for all of us. This is why everyone says take a deep breath and relax - it is not cancer unless and until they say it is cancer.

I wish you the very best and hope all reports come back negative

Happy new year to you and yours.

Ilana,

First off just because you may have HPV in your Cervix, it doesn't mean that you will have it orally. Two completely different paths. That said since you want to get to the bottom of it I would contact a nearby CCC (see list below)

http://www.oralcancerfoundation.org/resources/cancer_centers.htm

and get their opinion. The only way to determine if it is oral cancer is to get a biopsy of either the BOT or the Node or both and then the only way to determine if the cancer is HPV+ is to have the cancer cells tested by one of the certified HPV testing labs, like Johns Hopkins.

As you can see I had BOT primary with mets to at least 2 nodes but I had no symptoms other than my neck was slightly swollen. This cancer, especially if HPV+, is not often easily detected.

Well, speaking as a non doctor, it is quite possible that all this is related to something other than cancer. It is not uncommon for some people to have relatively large lumps on the dorsum of the base of the tongue, since this is where the lingual tonsils are, and when you have an infection etc. they get inflamed and enlarged. Both the links that previous posters have put up do not send you to the independent report of the best CANCER hospitals in the US. The additional resources link on the first page of the OCF web site takes you to a link to databases, and the first thing in that link, is best hospitals... cancer hospitals. Clearly, since you said NY, you are next to a bunch of really great places like Sloan Kettering that has a world class head and neck department.

If it is really leukoplakia in your mouth, you can take some comfort in the fact that only 25% of them ever convert to cancers, (treated or not) and the odds of having a salivary cancer and a base of tongue cancer at the same time is almost nil. The term lesion in relationship to something that your dentist thinks is "going to pop" is an overstatement of what he is thinking. It would be more likely that he thinks the gland is clogged, and will clear over time. This happens to people every day and has nothing to do with cancer. Personally, I do not think that brush cytology of a salivary gland is going to yield you any finite answer. As previously stated, having HPV in another area of your body is not indication that you would also have it in your mouth. There is no known mechanism for it to migrate from one location to another documented.

As others have stated and I agree with, if something is persisting, you need to follow this to diagnostic conclusion. But to jump to cancer is something that you should, at least at this time, not make. There are plenty of viral and bacterial conditions that would account for the things that you are experiencing, which should be eliminated from the list first.

You do not mention tobacco history, and tobacco induced leukoplakias are really common and usually resolve when the use of tobacco is stopped.

I've had similiar symptoms to you. My tonsils have been chronically inflammed for the past several months, had inflammed throat and nasopharynx. The nasopharynx inflammation has subsided, but my throat is still a little bit inflammed and tonsils as well. It seems that I have acid reflux. The CT scan showed no weird growths in the throat that could be causing these problems, but the ENT's are convinced it's acid reflux. The medicines seem to be helping. Have you been stressed out at all? Have you had any symptoms of acid reflux? Like gagging, a feeling of a lump in the throat, etc???

By the way, how stressed out have you been feeling lately?