So, I had the excisional biopsy today and pretty much freakin out. This morning my gyno called and said my pap was normal but I tested positive for one of the high risk strains of HPV. I got that phone call right before I went to oral surgeon. Needless to say I'm emotionally spent. Even if he removed that one spot I know that it's very likely to return. I'm looking up from rock bottom right now. After the procedure I asked the dr if it looked very suspicious. He stated that it looked suspicious. I have no reason to have leukioplakia. I'm seriously back to freaking out every other minute. If I'm having my oral cavity change due to a high risk strain of HPV...this will be going on until it eventually turns into cancer. I have white ares all over my tonsillar pillars due to removal of my tonsils. I'm now thinking thats precancerous changes. It feels like this is the end of the world...literally.

Sharrone,

You are in the much hated limbo of not knowing. This is the place where your mind can, and will, imagine every worst case scenario you could possibly face. Of course it has a tendency to concentrate on the absolute worst case, which is the fatal one.

So your mind has now arrived at �this is the end�. This of course will change. This is not the end. It is the beginning. The beginning of what? is the question you will now need answered.

If your biopsy comes back negative, you have had a good scare and will be very vigilant with your health moving forward. Your view of the world and your place in it will be forever changed and life will have new meaning.

If your biopsy comes back positive, you will have a defined diagnosis. This will come with a defined path toward beating the disease and continuing on as a great mother to your child. You will know (because all of us here will keep telling you) that you do have a future and you have a fight on your hands to attain that future.

Either way, the fatal world of not knowing will end soon. You will know and it will change your life, but it will not end it.

Sharrone,

After my biopsy, I was a complete wreck the week before my results came in. I completely understand how you're feeling right now. After all the research I had done, I just knew that I had cancer. I have a bit of positive news for you though. I met with a Chemo Oncologist two weeks ago (I don't need chemo or radiation, but met with them to cover all bases). She informed me that she was ordering pathology to test my tumor for HPV. The Doctor told me that if in fact, it is HPV, the cancer is less likely to return.

During my time in "limbo" as Kelly referred to, I basically decided that my life was over and I literally began planning my funeral. I suffer from horrible anxiety too and have difficulty with "Let go and Let God". Well, it turned out that I had cancer. However, my cancer was Stage 1. Very good news! I had surgery to remove it and my prognosis is great. Not every case of cancer is horrible and deadly.

I guess I'm just trying to send some positive news your way. I've read most of your posts and I really empathize with your anxiety. I'm hoping you can find a way to calm yourself down a bit and ease your mind. (Watching the Golden Girls always helps me)

Take care,

Ashley

Thanks for the reply guys. I just keep staring at the white areas where my palentine tonsils used to be and remember how the ENT just dismissed the change in color. Now I'm convinced that the Leukioplakia has spead all over. It's on both sides and I remember someone replied to one of my posts and said that if the color is the same on both sides, it's a good thing. I don't know how I'll get through this all. I've decided that now matter what, I'm going to go to MD Anderson for a seond opinion. At least I work for an airline and travel for free. We also have a gazillion flights from Dallas to Houston a day. I'm really freaking out because the ENT didn't take my tonsil area serious because he thought I was a quack. Lesson learned and I've really tried to calm down until today. I've had to take sleeping medicine every night for a while now. It's funny you should say that about the HPV oral cancer. I figure since the infection is viral, it would be more likely to show back up than say a tobacco induced oral cancer because it's not a persistent virus. I'm physically ill right now.

Sherrone,

I think I may have said this to you once before but if not...there is no correlation between a positive HPV finding in your cervix and HPV orally. Those 2 areas would have to independently be infected. The virus does not travel from one area of the body to the next without assistance.

Thanks for your reply David. I understand what you are saying. I have reason to be concerned just like everyone else that has an HPV positive oral cancer diagnosis.

What am I missing here sherrone? Who said you have a positive oral cancer diagnosis? Until someone does, you have something white in your mouth. Leukoplakia? Hope so. 75% of the time, untreated, it NEVER progresses to low grade dysplasia.... and even if it goes that far, only 25% of all dysplasias ever covert to cancer. Making the leap from being HPV 16 positive, even in your mouth, is not the same as having oral cancer, nor does it mean you will ever have oral cancer. The vast majority of people that develop aHPV16 infection clear it in a couple of months through their own immune system. You are jumping to the worst possible conclusions without the proper information.

Try to stay calm until the biopsy comes back.

Everyone one here has been through the agony of waiting for biopsy results. But equating an HPV16 infection with a diagnosis of cancer is a big leap, that does not happen in most people.

Thanks Brian so much for that! You don't know how much I appreciate your responses. I know I'm frustrating others because I'm even getting on my own nerves. I have my CT scan today at 2:00. This has all been just so overwhelming. I tried to watch a movie and force myself to eat. I'm a very sick and scary skinny right now. I've always been athletic (distance runner) and was so looking forward to running outside this summer while my kiddo was away. He will be back at beginning of July and all my free time has been spent worrying. I'm trying hard to be still and not panic but it's so hard. I guess my fear is that I've read a lot but everyone's case seems so different and cancer is often times so unpredictable. I made the mistake of reading Stephanie's blog and it was beyond belief. I've read so much on this forum and feel informed yet still in the dark about how everything works. I'm terrified of the unknown. I know that I have no reason for the white spot to be in my mouth. I was also under the impression that if you were infected with HPV 16 or another high risk strand that it would definitely change into cancer one day. I guess I don't know a whole lot. I've read all of the studies online and they seem very bleak and scary. Thanks again for the post Brian. I'm sorry if I sound doomed but it feels that way right now.

Just got back to work after CT scan. I had a pretty rough morning and now going to try and concentrate on my work for the rest of the day. I have definitely not been worth my salary these past two weeks. Waiting is very hard.

When I was in Vietnam, I realized that with the exception of a few, who were not normal in so many ways ( not all positive), we were all afraid at some point or another, if not a matter of daily routine. You have choke down your fear, and do your job, trust other on your team to do theirs, and you move forward. Other choices do not exist. Failing to do so will get you killed, drive you crazy, or get others killed. None of which is a good outcome. THERE IS ALWAYS FEAR IN THE RANDOMNESS OF MUCH OF LIFE.

Cancer is very much like that I think. So we put up a good show, but in the end we are all at some level, afraid. It is cancer after all, the disease that takes more lives than anything else. But you do not have cancer. Stay in the realm of today's reality.

We are creatures, that by our very nature, live a finite amount of time and then are gone. Given that simple reality of our existence, in our culture in particular, it is a concept that few embrace. That lack of ability to accept reality that one day we will not be here any longer, leads people to waste the time that they do have in foolish ways. Do not read into this that you should not become defensive, proactive, informed, but read that once you have done what you can, you have to reach a point where you accept that you cannot know everything there is to know about this subject, and given that you have learned what you can, make the best decisions possible with the information that you have, and understand that much of it in the end is not ever going to be in your control.

You have no good reason TODAY to believe that you will not live a long healthy life. That is a fact that you should take to the bank. YOu are not like most of the people here. You have a viral infection, and they have cancer. You are making a leap which the dots are not connected on yet. There's plenty of time for worry down the road if you end up in this club. In the meantime you have to find balance and appropriateness. You have done what you can to this point. Now you should be dealing with the reality that you should be spending your time doing something meaningful in your life. That does not include worrying about things out of your control to the point of paralysis, or seeing boogie men behind every shadow instead of LIVING. Look at all the energy you are burning doing something that is not productive. Force yourself to get centered, or ask your doctors for some of mother's little helpers to get you to that place, no shame in that. But making yourself physically sick has to stop.