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reverie Offline OP
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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.

Last edited by reverie; 05-27-2008 08:23 PM.
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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.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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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.


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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reverie Offline OP
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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.

Last edited by Brian Hill; 09-26-2010 10:48 AM.
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reverie Offline OP
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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.

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


* Root for Joe *
Sister of Joe (43, non-smoker/chewer; occ. drinker). Mouth problem 3/07. Diag with Stage I 6/07. Diag with Stage IV 9/07. In EPOC at Univ of Chicago. Cisplatin/cetuximab 1/wk x 8. Then, IMRT 5x/wk x 7 and weekly chemo. Done 12/21/07. Looks good as of 4/08, 7/08, 8/08, 1/09.
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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.



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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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

Last edited by angels1313; 05-29-2008 06:43 PM.

SCC left tonsil, tonsillectomy with additional tissue removed 06/10/08, a few teeth on top left side removed 09/05/08,recurrence before treatment started at BOT and tonsil area, 35 IMRT treatments began 10/15/08, and Cisplatin IV (began10/16/08) weekly for duration of radiation.
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Angel --

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

-- Leslie


Leslie

April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
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Thank you very much. Very interesting read.


SCC left tonsil, tonsillectomy with additional tissue removed 06/10/08, a few teeth on top left side removed 09/05/08,recurrence before treatment started at BOT and tonsil area, 35 IMRT treatments began 10/15/08, and Cisplatin IV (began10/16/08) weekly for duration of radiation.
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