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#197681 12-10-2018 05:56 PM
Joined: Dec 2018
Posts: 1
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Joined: Dec 2018
Posts: 1
Hello, everyone. I have been lurking this website for a few days in hopes of seeking comfort and recommendations. Hearing and reading stories of survivors bring great relief to me which is why I frequent here.
Anyway, I have been exposed to the HPV virus recently. Long story short, the woman I was with broke the news to me that she was tested positive for HPV 43 (low risk) and HPV 51 (high risk). Prior to this knowledge, we have only been together for a few days before we "committed". I thought she was the one but in the end the relationship fell.

For the past 2.5 months, I have been going through anxiety and depression. I realize that a lot of people in my life and posters here have said to try and enjoy your life as much as possible. I am trying. However, there is this nagging "thorn" or thought that always comes back to remind me, "Hey, you are enjoying your life. But guess what? You may have contracted strain 51!".

September 28-29th were the days we "committed". Today is December 11th and I have already seen/spoken to 20 doctors specializing in ENT, Urology, Oncology and 1 psychologist. Ever since the event that has happened, it has cascaded itself in molding me to a hypochondriac and downright OCD. There wasn't a day where I didn't look at myself in the mirror to check if there is anything in my mouth. I hope to share my story in more detail later on another thread. Hopefully, I will have my questions answered.

It is great to know that I'm not the only one that is going through these hard times. Thank you for accepting me and have a blessed day.

Last edited by prayhope; 12-10-2018 05:58 PM.

Sep 28-29th - Possible exposure to HPV strain 51 and 43.
Oct. 18 - first HPV oral swab = negative | Oct. 25 - ENT checkup = cleared.
Oct. 26 - second oral swab = negative. | Oct. 31 - third oral swab = negative.
Nov. 06 - ENT = cleared. | Dec. 09 - ENT = cleared. | Dec. 10 - ENT = cleared.
prayhope #197683 12-11-2018 05:04 AM
Joined: Jun 2007
Posts: 10,507
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Administrator, Director of Patient Support Services
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
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Welcome to OCF. Im very sorry you are going thru so much recently. Excessive worrying can be debilitating!

Im very sorry but I dont think you are in the right place to get help. Our site is dedicated to helping oral cancer (OC) patients/survivors and caregivers. (The Oral Cancer Foundation... aka OCF) While we do discuss HPV here and have since OCFs inception funded research, our discussions are almost entirely about OC caused by HPV strains 16 and 18... not the strains of 43 and 51 you mentioned. Im sure you have picked up a considerable amount of info after seeing 20 medical professionals about your possible HPV infection. With about 200 strains of HPV at this time, only 9 of the strains have the potential to cause eventually be the cause of cancer. Theres another 6 strains that are suspected but not yet proven to also cause serious health complications including penile, cervical, vulvar, anal and oral cancers, also genital warts. At OCF, most of the info we have on our site is about HPV+ OC.

I do understand just how terrible it can feel to worry constantly about something that is out of your control. Worrying so much along with waiting for appointments and getting your hopes up that every appointment you go to will give you the help you are seeking must be terribly upsetting. I would actually suggest you may want to focus on finding some relief by seeing a therapist and/or anxiety meds. Im sure you must have been thoroughly researching HPV online to have discovered our site. Unfortunately about all I can do is to steer you in the right direction and give you what HPV info I know of. Im pretty sure you wont see this as I do but, you really are so very fortunate to come to OCF without being sick or having OC.

A few facts about HPV which you can read more about in the Understanding section on the main OCF site... OCF Main Site... Understanding, HPV section

--- HPV is the most common STD with an estimated 80% of adults having it at some point in their lives.
--- Patients with HPV usually clear it on their own without any ill effects
--- Even if a person has HPV, it does NOT they will ever contract cancer caused by HPV
--- 90% of HPV related cancers can be prevented by getting the Guardisil shots
--- 99% of patients with HPV+ 16 or 18 will clear the virus without it ever causing OC or other health issues
--- The HPV virus can lay dormant for years, even decades without it ever causing any issues
--- Ongoing HPV research is uncovering new info all the time


According to the CDC's website... "At this time there is no test to find out a person’s “HPV status.” Also, there is no approved HPV test to find HPV in the mouth or throat. There are HPV tests that can be used to screen for cervical cancer. These tests are only recommended for screening in women aged 30 years and older. HPV tests are not recommended to screen men, adolescents, or women under the age of 30 years. Most people with HPV do not know they are infected and never develop symptoms or health problems from it. Some people find out they have HPV when they get genital warts. Women may find out they have HPV when they get an abnormal Pap test result (during cervical cancer screening). Others may only find out once they’ve developed more serious problems from HPV, such as cancers."

OCFs opinions about HPV and oral cancer from the main OCF site in the Understanding section.... "No currently available adjunctive device, using tissue auto fluorescence, tissue reflectance, or brush cytology, is capable of assisting in the early discovery of these disease states as pre-cancers. There is also no evidence that the current swish test to collect exfoliated cells to test for the presence of HPV16 has any value in this process. This test finds episomal HPV infections, and it is the persisting long-term infections that have cascaded into E6-E7 DNA involvement in the cells that are of concern. In an HPV world, the adjunctive devices on the market today, mostly sold within the dental industry, do not show efficacy in finding early HPV+ oral/oropharyngeal cancers."


With about 200 strains of HPV, only 13 are behind causing cancer. Its been discovered HPV related cancers are most commonly found to be mainly from these strains... 16, 18, 31, 33, 45, 52, and 58. What we mostly see around here is the majority of HPV+ OC are caused by #16 with some but less caused by #18. This is why I say I dont think we can be of help to you as the strains of HPV you mentioned are not what we see as causing HPV+ OC. At OCF, we see some very, very sick patients. Theres also caregivers who are facing unbelievable challenges watching helplessly as their loved ones struggle to even get out of bed some days. Our first obligation is to assist these members who are very ill and desperately need as much support as we can possibly give them. Some of our members who are fighting thru a recurrence or they have been given a terminal diagnosis are our top priority. Ive given you HPV info thats mostly relating to HPV+ OC which is about all we can help you with. Luckily for your situation, your odds of contracting OC from the HPV strains you have been exposed to are extremely low. As I mentioned before you may want to consider getting the Guardisil shots to protect you from the cancer causing HPV strains.

To be completely honest with you, other sites that deal specifically with HPV would be a better fit for you. With the new changes (October 2018) to the Guardisil shots now being given up to age 45, you should consider getting vaccinated which can be done by your family doc. I hope you can find what you are looking for.

Best wishes!











Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile

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