I'm a 27 year old female in relatively good health aside from complicated migraine and chronic leukopenia (low white blood cell count). I consider myself relatively STD-aware but I stupidly did not get the Gardasil vaccine out of sheer ignorance. I did not know HPV could cause cancer. Like many other women will experience in their lifetime, I have high risk (and possibly low risk) HPV of the anogenital tract contracted 18 months ago. I also practiced oral sex with the partner I contracted this from. Most recently I developed an enlarged left tonsil noticeably larger than the right, and the extreme lumpiness of it concerns me--there are growths on the tonsil, along with 4-5 scattered papilloma (I think) on the left tonsillar pillar and extreme redness compared to the right. I am referring to the palatine tonsils.

I don't know if this matters but I also have genital herpes. I only relay this information to show that my body apparently very easily contracts these problems. Please don't judge me. I and my partners have all been tested for the gamut of STDs with clear outcomes (except for HPV, which men cannot be tested for and women could only recently be tested for), but a freak accident occurred: one of my former partners is apparently a false negative. I am not kidding, that minute chance actually happened to me. My mind is still reeling from this, two types of STDs despite testing and precautions.

Please tell me the most definitive testing I should request to determine what if anything is going on with my tonsil. I saw him 3 months ago when I had trouble swallowing on that side and he stuck a light down my nose into my throat, and said he couldn't see anything suspicious. I did not tell him about my source of concern (HPV)--too ashamed.

Can an ENT do a brush biopsy? Is that available everywhere? I know he will not have a Velscope light (sp) nor will any dentists or oral surgeons in my area. I live in a smaller town in the south and I am 100% positive my ENT (and every other doctor for that matter) has never heard of the HPV/oral cancer connection. I am sure he is going to look at me in shock and disbelief and disapproval. He has followed me since I was a little girl and it's going to be difficult telling him my history. Doctors here run on the conservative side and I want to keep a good relationship with him because it's hard to get in with another doctor. What should I do, say, and ask for? Sorry for the length. Thanks very much for all you can advise.

With no visible lesions, a brush biopsy will not help you, and is not a definitive biopsy mechanism anyway. ENT's are trained as surgeons (there are two types, be sure you are seeing one that is a head and neck surgeon since they are accustomed to dealing with head and neck/oral cancers anyway) and if they wanted to biopsy something they could.

Your current doctor, given your description of him, may not be the person you wish to explore this with you, just based on how you describe his knowledge, let alone any conservative nature. You do not say where you are in Florida, but of course there are several competent cancer centers there where you couuld be evaluated, and there is also a dental school which will have an oral medicine specialist on staff (they are seldom in private practice) who could also be a good source for a competent exam and opinion.

Being infected with HPV does not mean that you are infected with one of the versions of it that causes cancers (oncogenic versions) and even if you were, there is no guarantee that you would actually have it progress to the cellular changes that would then lead to a cancer.

As to the vaccine It works the best in pre-sexual young women and boys (off label), and you likely were not a candidate for getting it anyway. You didn't mss the boat here, you probably would not have helped or been available to you. So you have been tested for HPV in one anatomical location of your body, and apparently tested positive for a version (low grade) that only causes warts, and another version (high grade) that has the potential to be oncogenic. This does not mean that more will happen, but you are wise to be prudent. There are several posters here, most likely davidcpa, that will likely reply to you tomorrow that are in Florida, have good connections to competent doctors there, and I hope that they will through a private PM, send you some possible choices of people or places to go to to follow up on your situation. With any luck this will all turn out to be something not dire.

There are many reasons that the tonsils can become inflamed and swollen, and before you make a mental leap to cancer, there are simple tests that the appropriate people will put you through to eliminate all the easy, non malignant reasons.

We are not a judgmental bunch as a rule, and you can discuss openly what you wish here. This crowd has been through some tough stuff, and they wouldn't be here if they didn't wish to help. How someone comes to our disease is not what concerns them... seeing you get through any cancer issues is.

First off you are not ignorant. You seem to be very inquisitive to a good point but you need to read more about HPV as many of your fears are most likely unwarranted.

Where in Fl are you?

Please feel free to call me or e me anytime. I have sent you a PM.

Thank you both for your replies. I live in northern Florida. The reason I am concerned about oral HPV/possible cancer is because the high risk HPV caused cellular changes down there. I had to see a gyn-oncologist. As of now the changes have regressed after intensive therapy and dedication to diet and lifestyle modifications. But I already took/still take great care of myself, so there actually wasn't much I could do/add/subtract. I am concerned that with all this healthy living and precautions HPV still caused cellular changes. I'm one of the rare ones who exhibited symptoms of genital HPV infection (I'll spare you all the details) but because I thought I'd been so cautious with testing, I did not seek medical attention until much later. Oh, I am a non-drinker/non-smoker (well to be fair I smoked 3-4 cigarettes a decade ago while in college as I think most young people do at some point, but I don't think that counts) but the latest literature suggests oncogenic HPV is a lot worse than smoking.

You are right: I was sexually active before the referenced partner so not exactly an innocent 9-year-old girl, but I'm pretty sure based on my prior overall gyn health I'd never been infected before. But I cannot prove it.

I have read pretty extensively about HPV. I understand strains 16, 33, and 18 are most responsible for oral cancers, in that order. I may have more than one oncogenic strain, I have no idea. I just know I have at least one but considering type 16 is the most prevalent type it's a pretty good bet I have or had that one.

I understand my tonsil issues can be attributed to any number of things but given my history I feel this should be investigated. Prevention or at least preemption. Recently, in the last few weeks, my genital herpes has become a real problem. I suffer constant herpetic neuralgia which means my immune system isn't keeping it under control. I have unwittingly overwhelmed my immune system with poor choices in partners and I feel so sad about all this.

Well, thanks for reading and for this valuable service. I'll carry the more identifying details over into PM.

Edit from Brian Hill for future readers. ONLY HPV16 is causing oral cancers. This posters list of HPV's is incorrect. Viruses do not care about diet and lifestyle modifications. You immune system either recognizes them as a threat or it does not, and you cannot at our current level of understanding augment this.

P.S. Thanks for not judging me. I am a never-married professional female, part of an ultra-conservative family and it is very difficult managing this alone. As these are not the only health problems I have, I feel like my stock has plummeted to the point of no return. The only other person who knows is my mother (who can't even look at me anymore) so it's nice to get help here.

You shouldn't be judged for something that affects so many people. Hang in there and get to the proper doctors.

I have reprinted below some facts regarding the Gardasil vaccine and HPV that I prepared for my testimony before the Florida House of Reps last year so that you may understand that you are certainly not alone in acquiring HPV and there is a recent study that concludes that HPV+ SCC responds better to treatment and has a lesser chance of re occurrence than non HPV SCC so I don't know where you saw literature that contradicts that?

Understand this was compiled a year ago.
_________________________________________________________

Fact-This vaccine was/is the most tested vaccine in US history.

Fact-This vaccine has been approved and endorsed by the FDA.

Fact-The FDA has followed 25,000 females who were given 75,000 shots of the vaccine for 5 years without one, as in ONE, complication except local irritations such as redness, swelling, muscle discomfort at the shot site similar to many vaccine shots.

Fact- Over 2,000,000 doses of this vaccine have already been administered over the last 2 years privately without ONE major reaction as explained above.

Fact- From the time Jonas Salk discovered the polio vaccine until the time it was MANDATED only 2 years had passed.

Fact- Each year millions of flu vaccines are administered WITHOUT ANY testing. Each year the flu vaccine is quickly produced based upon what flu strain the experts THINK will affect the US and within 6 months time it is developed and mass produced.

Fact- Unlike most, if not all vaccines, the HPV vaccine is produced synthetically and does not contain live or dead virus cells. Our body produces natural antibodies that are present when the actual virus invades the body and are then killed.

Fact- The vaccine was produced to kill HPV strains 6 and 11 which cause 90% of genital warts and 16 and 18 which are Class One Carcinogens that are known to cause 70% of all cervical cancers, 60% of all Oral Pharyngeal cancer and cancers of the Larynx, Anus and Penis and Oral Cavity.

Fact- The vaccine has been proven 100% EFFECTIVE in protecting the female body against those 4 strains. Male testing is currently underway.

Fact- In the US alone there are already over 20 million people infected by HPV and 6.2 million additional people are infected each and every year by HPV.

Fact- HPV is the most common sexually transmitted virus in the US.

Fact- By age 50 at least 80% of women will have acquired the HPV virus. This is known because their bodies have produced the antibodies. The CDC estimates that 80% of the entire US population will have HPV at some point in their lives. How many will have the oncogenic (cancer causing) forms is unknown.

Fact- This year 11,000 new cases of cervical cancer will be diagnosed in the US and 3700 will die.

Fact- Over 9000 new cases of HPV related cancers in AMERICAN MEN each year are diagnosed in the US and half will die.

Fact- The HPV virus may lie dormant for DECADES before cellular changes are seen, when, as we know, it may be too late to deal with. Many HPV positive cancers are not found until they are already a Stage III or IV.

Fact- A Florida Bill would have required insurance companies to cover the shots and also would have come under the FREE SHOTS PROGRAM for those without insurance. ( Do you suppose the insurance lobby spent a bunch of money to defeat this????)

Fact- No one argued financial aspects of the Bill.

Fact- The current incident rate of cervical cancer in Florida is 26% higher than the US average.

Fact- The Bill allowed an OPT IN - OPT OUT feature that simply required the parent to sign a form stating they did not want their child to get the vaccine. Parental rights were not usurped. This would have at least focused their attention and required a positive response either way.

Fact- In 1997 Florida MANDATED that school children receive the Hepatitis B vaccine which is also a STD without any fanfare or opposition.

Please ask yourself how could ANYONE object to the passage of this or similar bills.

Reverie, I to have a problem with my tonsil. You described basically what my left tonsil looks like. I noticed it when I got a sore throat about 3 months ago and was treated for strep throat but it never got better. How long has your tonsil been enlarged that you are aware of? You are in good hands on this web-site as I have received great information from some of the most informative and nicest people. I am also new to this site. The information David just presented was amazing. I would also like to know from someone of an update on our young male population in reference to when a shot could be available to them for HPV. I lost my best friend 2 years ago due to HPV. She was 52 years of age, and that was the first time I had ever heard of HVP. More information needs to be out there for the public. I wish you all the best, Angel

Angel --

See this thread concerning the anticipated availability of the HPV vaccine for boys.

-- Leslie

Thank you very much. Very interesting read.

Merck's trials on boys are due to be finished this year and they expect no major waves when they go before the FDA in 2009. As for those of us who are adults and have been exposed to the virus this is a mute point.

There are doctors that are giving the Gardasil shots to boys and have been for some time.

Gainsville has a great head and neck center there.

Thank you all for your responses. Shamefully I have been ignoring my tonsil problems as work is busy and I have been planning a vacation over 4th July and wanted to wait until after that to sort this out, but a few days ago I took another look and I think it's worse. The red plaque on my left anterior tonsillar pillar has spread beyond the pillar and there are now several exophytic lumps growing out of my left tonsil as well as one lump from the same tonsil growing down into my throat where I can't see. ALSO, I got retested and still have high risk HPV in another part of my body and it's just not going away...so...I guess I should get a workup soon.

Is it even possible for HPV tonsil cancer to develop in such a short time as 18 months?

To answer your question angel1313, my tonsil has been enlarged anywhere from 2 months (which is when I first noticed) to 18 months (which is when I contracted HPV, though I have not yet had the appropriate workup to tell me that my tonsil problem is HPV-related yet it seems the only plausible cause).

I am going to get in touch with David today as we both live in FL and he has done well with his tx at Moffitt. I do not really want local ENTs here handling my case from the start as I will probably be laughed at and shuffled around (I've had several surgeries and lots of experience with specialists before) and I wonder if it's possible to go directly to a CCC like Moffitt or Shands (johnny47, does Shands in G'ville even have a CCC?) or will they simply look at me like I'm kooky and send me out the door with a referral to see a psychiatrist?

Thanks.

Doctors who are currently giving Gardasil to boys, who are not part of the clinical trials, are doing it "off-label". The whole idea of the clinical trials is to work on efficacy, dose rates, dose rate levels where toxicity is encountered, etc. This can vary between races, age and sexes. Maybe the dose rate they give for girls is too low for boys.

Reverie,
Please get a resolution on this as soon as you can or it will ruin your vacation, just by increasing your worry threshold. Some doctors tend to minimize the OC risk for younger patients yet we have patients, in your age group, come here with low staged cancers and not survive. I am not trying scare you, and it may well be nothing, but in the remote chance that it IS SCC then time is everything.

You are wise to seek out a CCC for Dx and Tx.

Reverie.... To read the description of your left tonsil, it sounds exactly like mine. I just had surgery to remove the left tonsil and a little more in that area and it was biopsied as scc and I have a few lymph nodes involved. I could not get to a ccc but now that I have the diagnosis I plan to try. I think you are very wise in your health decisions. My ENT told me that days matter and that is why he wanted to get the tonsil removed asap and biopsied. Personally I wanted it biopsied first and then staged. But my ENT wouldn't do that. Next week I will find out the staging that will follow. Right now it appears that radiation will begin soon. Just get to a specialist as soon as you can. Good Luck and take care, Angel

Now that I am sufficiently scared because it seems to be getting worse by the day, what should I do? Who should I see? Should I start local or start at a CCC? Most specialists aren't even aware of the oral cancer/HPV link.

If I see my ENT, do I request a biopsy? Is it possible to accurate biopsy and diagnose my tonsil lumps without taking it all out? I don't think I have enough leave for an adult tonsillectomy. As well I hear it is a horrendous procedure.

Angel, is your SCC related to HPV? If SCC of the tonsil is what I have, then mine is definitely related to HPV.

Reverie, I ignored my tonsils for 4 months. I first noticed it when I burnt my mouth on hot pizza followed by a gulp of surprisingly hot coffee. I watched and poked it periodically wondering why it wasn't going away...I had family, work, school, Christmas to deal with...and was very surprised when the doctor gave the "you have cancer" message. The good news is, despite an "agressive and invasive" cancer, it did not spread and I consider myself cured. Of course, I can't help but wonder what would have been had I gone to the doctor right away...

My husband and I have been together for 30 years. My gut feeling is I compromised my health when I worked a very stressful 18 months at 70 hour work weeks. The complexing part is except for some dental issues (root canals), I haven't had as much as a cold in 20 years (the age of my son).

Simple Gifts, did your tonsil look the way I described mine, and what was the process to your diagnosis? Did you have a tonsillectomy or was he able to determine SCC from a less invasive procedure? Can you tell me what I should do to get the fastest and most accurate diagnosis possible given what I suspect it is? Thanks.

Reverie, I can only tell you about what happened to me. I didn't have the option to go to a ccc. I was referred to my ENT by my pcp. He decided to have a cat scan with contrast, and a Pet scan, but he said to begin with that he knew what I had. And so did I. I am sure they have saw just about everything. They took out my left tonsil plus extra tissue in that area on 6-10-08 and was in the hospital thru the 13th of june. I had other health issues. It is hard to swallow and my ear hurts but everything is slowly getting better. Getting a tonsilectomy is no walk in the park for someone my age.(55) Now my Ent says he was going to meet with the cancer board on Friday and everyone would have their input in my case. He had told me I would be getting radiation to kill the cancer in my lymph nodes or any cancer cells that could have been left next unless something changes. I would like to get to a ccc to get another opinion before any more procedures are done if at all possible. Your question regarding the biopsy was an issue for me not being able to get into Emory as they said I needed a biopsy first and then I could make an appt. and talk with them. Also, the Pet scan will have areas that lights up like a christmas tree where there is suspected carcinoma because of the nuclear medicine that is used in the test. The test is a breeze. If Davidcpa reads your info he can give you some great advice. He sought out several Dr.s before making his decision. But my ENT said because of the way mine looked that days did matter so I had to get it done asap. And I mentioned the relationship between HVP/cancer to several of the Dr.s I saw in the hospital and no one knew anything about it. Unbelievable! I ask them to check to see if I have HPV and they did not, so I don't know if my cancer is related to the virus or not yet. Take care and keep us informed as I know how you feel by not knowing your diagnosis as I went through that as well. If there is anything I can answer as to my case I will be glad to answer anything I can. These are wonderful people on this site who have really helped me. Angel

Simple Gifts I read they took out both of your tonsils. Was that due to scc in both tonsils? Angel

[quote=reverie]Simple Gifts, did your tonsil look the way I described mine, and what was the process to your diagnosis? Did you have a tonsillectomy or was he able to determine SCC from a less invasive procedure? Can you tell me what I should do to get the fastest and most accurate diagnosis possible given what I suspect it is? Thanks. [/quote]

The description from the ENT's report is "some scarring and a little indented area of the upper part of the anterior tonsillar pillar on the right side, but there is also a piece of waht appears to be tonsillar tissue hanging down. Impression: Growth of right tonsil vs. scarring. Recommendation: Microlaryngoscopy with biopsy."

After the surgery, he said he wasn't sure what he removed as it did not look like a typical cancer. I thought I was getting a simple biopsy (take a snip and and send it to the lab), but obviously I didn't ask detailed questions about the procedure. He did explain that tonsil cancer does not mean the cancer is in the tonsil, but rather the tonsil area.

[quote=angels1313]Simple Gifts I read they took out both of your tonsils. Was that due to scc in both tonsils? Angel [/quote]

Angel, the second tonsil was removed because after the original surgery the CT scan "lit" up in that area. It was easier to remove the whole tonsil and have it tested then go in looking for something. My ENT implied that it was typical for cancer to be in the tonsil. The tonsil tested fine - he assumed I just had some bacteria or something.

Just as a side note, since someone asked me last week, tonsillectomies NEVER remove 100% of the tonsil - there is always some tissue left. So as a method for prevention of ever getting tonsil cancer this doesn't work... they can atually sometimes even grow back to a certain extent. Also I wouoldn't trust a surgeon's eye to determione if the tonsile tissue looked like a typical SCC or not. As you all know, there is no trained eye that can tell you if something is cancer or it is not. That removed tissue should go to a pathologist for histological microscopic exam, which is the gold standard that will give you a black and white answer as to what it is.

Sent from the way out in the middle of nowhere back country of Idaho after a lecture tour in BC Canada and meetings with the BC Cancer Agency by satellite phone hook up....ain't technology amazing.

Brian, You are so right about both. I have heard of people who had their tonsils removed and they grew back, and until a biopsy is completed you can't really say what it is. In my case I had a couple of rounds of antibiotics and my tonsil looked awful still and didn't get well so I knew something was very wrong. Sounds like you are having a great trip. Thank you and others for this site. Angel

Reverie .... Today the ENT's office called and my Dr. met with the cancer board Friday and discussed my case. Now they are going to do a fine needle biopsy of my right thyroid as it also lit up in the pet scan and was found in the cat scan. Were you able to make up your mind about where to start in getting help with a diagnosis? Angel

My H&N surgeon told me that he thought that my tumor was around 2 years old at the time of diagnosis. It was essentially asymptomatic - no pain, just a mild sensation of something caught in my throat and a little hoarseness. It was a tan rubbery blob that had gotten do large that it pushed my uvula to the side.

Radiation decimated it and the tonsil it was attached to - I had no surgery. Everyone's story is a little different however so your experience may not mirror mine. There are other tonsil diseases that are not cancerous, such as PTA (peritonsillar abcess). If they give you antibiotics and there is no response by two weeks then you should get a referal to an ENT or head & neck surgeon for a more comprehensive examination and biopsy if need be (be sure that the doctor has head & neck cancer experience). Visual examination, palpation exam and the biopsy are the gold standard.

Just a general comment about HPV. I had tonsil cancer ( left side ) with affected lymph node. Had radical neck dissection and finished radiation in January 08. We started seeing articles about the number of rising cases of oral cancer that could be tied to HPV 16 and 18. Discussed with surgeon and ROC but neither seemed to be that up to date or care I guess as the virus can lay dormant for so long and at this point, what does it matter? I just had some blood work done by my family doctor and asked him specifically to see if I was HPV negative or postitive but he said lab work could not tell - tissue samples was the only way.

William. I also asked my ENT to test me for HPV and he didn't while I was in the hospital, so when I read your message I noticed that it says you would need a tissue sample, like a biopsy? to check for HPV. What I would like to find out is who would I contact, my PCP or someone else as I would like to have the test done and can't figure out who would be responsible for getting it done. Thanks, Angel

Gary, Yes I was referred to an ENT and he removed the Left tonsil on June 10, 2008. It was diagnosed as scc. I have several places that lit up in my lymph nodes on the Pet scan. They will be doing a fine needle biopsy on my right thyroid gland next Monday. My ENT has conferred with the cancer board at Harbin Clinic in Rome, Ga. I could not get to a CCC. But I hope to get there once this biopsy is done if needed. My ENT said I would be having radiation after my tonsil is healed. They are trying to determine if I need a neck dissection. Angel

Angel,

The slides that confirmed SCC from your tonsils can be used to test for HPV and they can be sent, with your permission, to Johns Hopkins. Moffitt sent mine like that and within 2 weeks the results were back.

David, Thank you so much! I will follow up on that tomorrow. Angel

The HPV page of the web site has the information on how to get in contact with Hopkins.

If you are a doctor that wishes to have tissue samples tested for HPV, or a patient that wishes to provide information to your doctor on where this can be done with accuracy; OCF recommends that you have the testing done by Johns Hopkins Medical Laboratories. They have a great deal of expertise and experience. The directions on how to contact them or where to send samples to are located at this link http://pathology.jhu.edu/labservices/hpv.cfm

Latest HPV news article from the OCF News RSS feed

http://www.oralcancerfoundation.org/news/story.asp?newsId=2214

Interesting article and it's also interesting to see the statements of the various "HPV experts". Testing positive for HPV 16, it's good to see that progress is being made towards definitive clinical trials and more research.

Johnny, Shands Head & Neck at Gainesville is where I was treated and go to for my follow-ups. I can't sing their praises high enough. They're still taking great care of me.

Lani

Reverie,

I'm from East Central Florida and was treated at Shands in Gainesville. I was sent there because my case was too advanced and aggressive for the local ENTs or Oncology departments to handle. It is a teaching & research hospital connected with the University of Central Florida. Their Head & Neck Oncology department and its doctors and professors are very highly regarded throughout the world. When we first were told that I needed to go there, my husband looked it and my RO up on line. He said that my Doc was thought to be one of the 5 best experts in head & neck cancer in the world.

So yes, Shands is a very, very good place to go.

Lani

my right tonsil is swollen and not only that, the base of my tongue has numerous red bumbs,that are very irraitating. This are sysptoms due to HPV. What should i do and does anybody esle have these red bumps on thier tongue?

Nick:

Welcome to OCF. Please take a few minutes to read the info for new memebers, it will help guide you. Also, please start your own post for asking questions. When you have time, add some info to your profile for a signature so others can know something about you and its easier to answer your questions.

HPV has been discussed many many times here. Have you been tested positive for it? For info you can search on the forum or on the main pages, both are full of info. There are several members here who are very well informed about HPV, sorry Im not one of them. If you post on your own new thread, then they will see it easier and answer your questions.

When in doubt, always see a medical professional. Best of luck to you.

Nick,

I'm not sure if you are asking or stating the part about HPV but unless your cells have been tested by a qualified HPV testing facility, there is no other way to confirm that Dx.

If your symptoms have persisted for a few weeks you need to see an ENT and one that sees cancer patients regularly.