Hi all,
A group of doctors at UPenn reviewed my case and determined my cancer had to have been caused by HPV. So now I have some questions.
Is it contagious?
Does is come and go?
What else do I need to know that I don't know to ask?
Suzanne,
Wasn't your cancer on your mobile tongue? I thought HPV was only the cause for some BOT and throat/tonsil cancers. Has this changed?
Did they send your biopsy for HPV testing or did they come to this conclusion another way?
M-
My cancer was on the right side of my tongue. Is that considered the mobile tongue?
They did not biopsy. Not for a lack of me trying, I asked 6 different docs to test for HPV and nobody would. They made the determination based on my health history and my pathology reports.
If it is the right side of your tongue by your teeth...then, that is the mobile part. The base of the tongue goes down to the throat area.
I think you'd be the first here to have HPV on the mobile tongue. My understanding was that HPV could only be determined from testing a sample of the biopsy.
Did they present HPV to you as a definitive conclusion or as their best guess?
It sure sounds like a pacify her guess. I think you had better go for another Dr to test you. If it is HPV there is much less chance of a reoccurence.
Margaret,
I think statistically, there is something like a 5% chance of SCC on the mobile tongue being caused by HPV. My tumor wasn't tested, for example, because the assumption was that it wasn't HPV+, but I wonder now if it was.
These guys can't know from taking your history. This is utter BS. Only a tissue sample plus a PCR test of that tissue is going to tell them anything. Anything else is speculation. Given the anatomical site, it is more likely that you are just one of those people that will never definitively know why.
Anything is possible and in cancer there are high likelihood's. As those relate to HPV the likelihood is that the lesion is in the posterior oral cavity, not the anterior tongue. Anterior tongue cancers are not a likely location for an HPV lesion. They certainly could tell if an HPV test was done on any of the removed tissue from your surgery. Confirm with them that that was how they determined it and let them show you the pathology report that says so. Other than that it is a bad guess.
Just as we always tell newbies that a biopsy is the only way to determine if you have cancer, the same is true with determining if the cancer cells contain HPV markers so only after the actual confirmed cancer cells are tested can they conclude HPV+ or HPV-.
While they were guessing did they also tell you what strain of HPV was in your cells? lol
Suzanne
I echo Brian and David's concern and wonder if you are a victim of typical medical condescension when a patient pushes back. they should have some tissue samples frozen that they can test for HPV otherwise its a SWAG (simple wild ass guess). I am curious as to what in a pathology report would indicate HPV.
I know how frustrating it is to have them refuse to do the HPV tests but that's because most institutions are not set up to do it. I only got my recent surgery tissue tested because my CCC finally made it "routine" for all head and neck cancers, before that they would not make an exception for me. (I was negative for HPV - bad news actually from what I read)
Suzanne,
Not all sites are able to perform HPV tests. When Dan was newly diagnosed, there was a poster here by the name of GailMac who provided a link to a form at Johns Hopkins that had all of the requirements for an HPV test.
I brought the form to Dan's doctors to request that the HPV test be done. Our doctors sent a tissue sample to Johns Hopkins and handled all of the paperwork. Our insurance did not cover the cost...hopefully that has changed in the past couple of years.
Up until I brought the form in, Dan's doc's kind of brushed me off regarding the testing.
I've been told that they keep tissue samples for quite some time. So, if you really want to know for sure, you could call Johns Hopkins:
http://headneckcancer.hopkinskimmelcancercenter.org/index.cfm/cID/1607The link above is to the oral cancer contacts at Johns Hopkins. I no longer have the link to the form. I'm sure you could get it if you called.
M-
Suzanne,
Just a curious question about your history (maybe that's why they thought it was caused by HPV) and one that I've been wondering about myself. Please smack me if I've crossed the line by being too personal.
My history includes a Pap smear that went from a Class I to a Class IV about 16 years ago due to HPV (I don't know the strain). After cryosurgery, I went back to a Class I and it's been the same since.
I only have the report for the tongue and lymph nodes, so I'm sure they didn't test for HPV.
I did bring that up on my 4 week check up because I am curious as to the coincidence. I know it didn't "jump" from point A to B, but just found it interesting that at one point in my life the HPV was there and here I am now. My doctor found it interesting too, but didn't have any input. I just don't know if there is any correlation between the two types at different times in my life.
Sorry......you know how I love to ramble! LOL
Suzanne,
It seems to me that the doctors don't know what they are talking about. With the experts we have here regarding HPV, and from what I have read, there are no documented cases of and HPV+ tumor on the mobile tongue. How anyone can make those statements without proper testing? In my opinion, borders on malpractice.
Curious how this happened at Penn when you go to Fox Chase.
Hope you're feeling better today. The weather was great today for the walk and we all missed you.
Jerry
Man..it took me all day to figure out what to say after I read the posts. I thought I was smarter than that. Turns out I needed you guys to fill me in. I've been so desperate since 2007 to know WHY this happened to me. I hear what you all are saying...I do. I want to talk to the docs and see what they say. I guess I feel like they are all smart people at a very good hospital so maybe they know what they are talking about
Patty...I would never smack you!! lol...you're funny. I'm not sure what the personal question is though. I'm not sure what my pap smears have shown. They don't check for HPV even when I asked them to last year. They said even if it did show HPV that would have nothing do to with HPV that would cause OC. I've heard that HPV can come and go because it's a virus. Maybe that explains why one point in your life it was there and now it's not.
I do still have a questions about HPV. Is is contagious?
HPV is passed from person to person via skin to skin contact. This includes all forms of it from the simple, benign wart causing types to the oncogenic versions of it. It is the most common sexually transfered STD in the US. Contagious is the wrong word, it congers up the vision of the plague and air borne disease or lepers. This virus is transmittable.
[quote=suzanne98]
I'm not sure what the personal question is though.
[/quote]
LOL I never actually posted a question, did I? I wasn't sure if discussing a pap history was considered too personal for you.
It's hard not being able to figure out "why" factor.
suzanne
For what it is worth, I too longed to hear the doctor's give me a reason WHY I got this terrible cancer. After joining OCF, I thought it was probably HPV considering my single years. I think all of us want to know WHY or even WHY ME? It's part of the common bond we share despite the differences in age, location and lifestyles.
Boatswife: Just to muddy the waters even more, my wife's PAP smears have been tested for HPV but also came up negative if that is the question you wanted to ask.
Suzanne,
I know this may sound strange, but having been a heavy smoker for years I have been spared the "why me" burden. I did this to myself in no uncertain terms.
Having said that I still think it is important to know your HPV status if you think this is the cause as HPV is transmittable.
In the mean time thought I would share with you the sign I have had tacked up over my desk for years. It says �IT IS WHAT IT IS�. I look at this sign often when questioning a setback in my professional or personal life. It reminds me to deal with �What is� and stop wondering about the �What ifs and Why�s�. I can�t change the past or what brought me to this day, but I can act today to effect what my life will be like tomorrow. This I know.
Kelly
Here's a few HPV facts I have acquired throughout my journey:
HPV is the most common sexually transmitted virus in the US. You can transmit the virus by touching someone's skin (warts) and kissing, both orally and vaginally, just to name a few.
HPV infects the squamous cells and can cause cancers of the cervix, vagina, penis, BOT, Tonsils and anus.
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.
Our immune system normally (estimated 90% of the time) clears the invading HPV.
This year 11,000 new cases of cervical cancer will be diagnosed in the US and 3700 will die.
Over 9000 new cases of HPV related cancers in AMERICAN MEN each year are diagnosed in the US and half will die.
More men die from HPV related cancers than women.
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.
There are well over 100 known strains of HPV and HPV 16 is the most prevalent strain causing cancer.
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.
There is no evidence that vaginally infected HPV will travel to other sites within the body and vice versa.
Science knows exacting how the HPV virus turns a good cell into a cell out of control (cancer) but even with that knowledge the only way they have found to treat it is to either remove or kill the bad cell and any good cells in the vicinity.
Scientists do not know if, after killing all the HPV transformed bad cells, if one can be reinfected and if reinfected can they still cause more cancer. To me that's only logical.
They also do not know why it goes dormant; where it goes dormant; what triggers it's revival and what exact role our immune system plays in preventing or allowing HPV to do it's thing.
There is a vaccine (Gardasil) that seems to be 100% effective in preventing the infection of pre sexually active, i.e., not already infected, 4 different strains of HPV, including 16 and there have been several studies attempting to boost the immune systems' response to already acquired HPV.
Hopefully with increased attention to the virus more will be discovered and one day HPV will no longer cause cancer.
Brian...your post made me laugh..you're right. The word contagious sounds bad.
David..thank you for the facts, I always like some stats:)
Charm, Patty and Kelly, thank you also for your input. Patty, that isn't too personal for me:) You know how they always say they will call if the pap is unusal? They never call me...so I guess that is good. I don't really need any more problems.
I so appreciate everyones input and understanding. On Friday I was so excited. I thought "Ahh...I finally know why this happened to me" Then I felt guilty like I did this to myself. Perhaps I didn't make the best decisions in my early 20's with the people I was with. But...like Kelly says (which I love) I can't change the past and what brought me to this day. I can what happens in tomorrow.
Thank you all
xoxo
[quote=Charm2017]
Boatswife: Just to muddy the waters even more, my wife's PAP smears have been tested for HPV but also came up negative if that is the question you wanted to ask. [/quote]
Yes......I guess I'm thinking that with my positive HPV pap result years ago, did that have any impact on the cancer that I have now. I know it's probably not likely, but it just a thought that's in the back of my mind.
[quote=Kelly211]
I know this may sound strange, but having been a heavy smoker for years I have been spared the "why me" burden. I did this to myself in no uncertain terms.
In the mean time thought I would share with you the sign I have had tacked up over my desk for years. It says �IT IS WHAT IT IS�. I look at this sign often when questioning a setback in my professional or personal life. It reminds me to deal with �What is� and stop wondering about the �What ifs and Why�s�. I can�t change the past or what brought me to this day, but I can act today to effect what my life will be like tomorrow. This I know.
Kelly
[/quote]
I was very mad at myself for waiting so long in seeking care. I knew it wasn't right and still didn't do anything. When I told my doctor that, I could have hugged him. He said "we all just hope it will go away" and helped me get over that "my fault" factor.
�IT IS WHAT IT IS� I love that and I'm going with it! LOL My husband just told me "you do what you have to do and move on to the next step" and we did.
[quote=davidcpa]Here's a few HPV facts I have acquired throughout my journey:
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.
There is no evidence that vaginally infected HPV will travel to other sites within the body and vice versa.
[/quote]
I think this is where my curious thoughts are with cervical HPV and this answers my questions. It still makes me wonder though, especially when it has the tendency to lie dormant.
Some of us, me included, will never know why we got cancer. With no known risk factors, I have stopped wondering and have gotten on with my life and have adopted the attitude of "It is what is" without even realizing it.
Thanks, Kelly as now I have another expression to hang my hat on.
Jerry
Just for the record.....
There is belief by some in the scientific community that HPV might lay dormant in you for decades. This is because we know that SOME other viruses do this. The most often stated example is herpes simplex. HSV1 and 2. We know that it can go dormant in you and return because WE KNOW WHERE IT GOES WHEN IT IS DORMANT. We can go find it there repeatedly over protracted periods of time. It lives on the ganglion of your nerves, until at some point your immune system is compromised, you have the flu, you are under stress or whatever, and it has a chance to emerge again.
There is NO definitive proof that HPV behaves the same way. No one has proven this, no one has published this. In essence there is much about this virus that we do not know. Many viruses come and go. Your immune system clears them and you just get re-infected over and over again in an endless cycle because they are so common in our world. HPV might very well be one of these. Example - you have an immune system which is capable of clearing the virus, your sexual partner gives it to you (over and over again if it persists in them, but not in you is how if might happen in a monogamous relationship) and your immune system gets rid of it, only allowing you to be re-infected in another sexual contact.
So while some people in authority state this comment about it going dormant with regularity, this is speculation, perhaps an informed opinion, but it is far from fact. When someone can identify it as a dormant virus this will be truth. That has not happened like it has in HSV.