I found out July 2004 (two weeks before my 44th birthday) of SCC in my right cervical lymph node, it turned out to have come from my right tonsil. After a modified radical neck dissection, I went through seven weeks of radiation, cisplatin, and Erbitux. I just had my one month check-up and so far so good.

I was one of those who didn't smoke and didn't drink except occassionally but was unlucky enough to get tonsil cancer anyway. I found this site after Googling anything I could read on SCC and tonsil cancer. There is not much out there. But I did come across a mention that there could be a link between the Epstein-Barr virus and tonsil cancer. (I had mono when I was 17 and it is caused by the same virus). Has anyone come across more information about this possible link?

Hello, Bret.
So happy to hear that all is 'so far, so good' for you. I haven't heard anything about a link with Epstein-Barr, although I know several people with that illness. My husband just finished his treatment for tonsil cancer (diagnosed in July this year, as well) on Friday, and the only "maybe" connection any of the doctors discussed was the theory of a herpes factor.
I am sure that if anyone knows of a link, it will be someone here.
Good luck to you going forward.
Nicki

My oncologist told me that Epstein Barr was suspect, along with HPV. The whole thing with viruses is a fairly new one. The older theory was the "oncogene" theory (which is still valid also), i.e., cell mutation because of exposure to a mutagen or carcinogen. There is also a genetic link theory, i.e., being pre-disposed to cancer due to heredity, possibly due to a weak immune system, etc. Or some or all of the above. The bottom line is that they are all good theories but they are still looking for definitive answers.

You're cancer free today and that is what counts!

Bret,
Congratulations on your good check-up. I don't know about an Epstein-Barr link, I know there are other viruses that have strong possibity of being linked to scc.
Of course, as long as they can't cure or prevent those viruses, there isn't much good in knowing about the connection. I mean on a personal level - it does not do me any good to know whether a virus caused my cancer until there is a cure for that virus. But in general, the more that is known, the more likely it is that some sort of cure or prevention or alleviation is found.
I never smoked at all or drank to excess either, yet I have had two completely separate cancers this year, so naturally I am wondering and wondering and wondering what in the world did I do or not do... But at today's level of knowledge there is no answer. I am just glad I live today and not a hundred years ago.
Good luck,
Leena

Hi Bret,like you, I never drink or smoke in my life but contracted tonsil cancer 3 years ago. The virus you quote is known as EB virus which is directly linked with nasophargenal cancer. This cancer is very common in Southern China and the hospital where I received treatment is very experienced in treating this kind of cancer. While tonsil cancer is very very rare in Hong Kong, the team of doctors treated me as if I were a nasophargenal cancer patient and my oncologist told me that when I was diagnosed, my reading of EB virus was very high and it dropped gradually after treatment to a normal level now. The doctors were not sure at this stage the correlation between the EB virus and tonsil cancer and I was a research case. In my medical appointment each time, they would test my blood for the reading of this virus.That was a kind of tumor marker and in July, the reading level suddenly rose and my oncologist was concerned about possible recurrence.He immediately referred me for a PET/CT scan to ensure that everything was OK.I know that oral cancer patients in the States are not given such blood test (correct me if I am wrong).I am glad that I am so closely observed although sometimes it creates 'unnecessary' anxiety. If you search on the internet, I am sure you will come across more information about this virus.I agree that knowing more about a virus may not help in the cure but the pursuit of knowledge about our disease can keep us learning (so we don't idle our time and let depression set in) and my doctor always said that I know more about cancer than a first year medical student(Ha!) Glad that you are doing fine after all your treatment.

Karen.

Hi Bret,
My husband, too, has tonsil cancer and recently finished treatment. He was a light smoker, social drinker, beer only, and had mono when he was 20 years old. He also worked in a factory with chemical exposure, and worked in orchards as a child with much exposure to fertilizers and pesticides. So take your pick! In retrospect, it would probably be more surprising if he HADN'T got cancer!

EB is less linked with oral cancers than it is to esophageal cancers which is well documented. If you search this site for HPV, or search HPV 16/18 you will find lots of data, and links to places outside the site that have tons more of it if you inclined to read all the thousands of articles on HPV and cancer. Also, in the news section of the site we have many articles about the relationship between this virus and oral cancer specifically tonsillar which has been well demonstrated. The links between HPV and cancer are not theory as mentioned earlier in this thread. More than 95% of all cervical cancers are directly caused by this virus, (versions 16 and 18) and its link to those of us who are non-smoking oral cancer patients as well as the sexual transmission of this virus between partners is well established in studies at Johns Hopkins and elsewhere. Virus and cancer are linked in many ways, and much is understood about this relationship, and we are closer to a solution as we have finally developed a vaccine for viral caused cervical cancer that recent test show is 100% effective (Story in the News section). That is big news in the oral cancer community, as it will also reduce the number of non-tobacco related oral cancers as it begins to be implemented. As Gary mentioned there are many mechanisms by which a cell can become a cancer cell. All the methods he describes involve a common act; something causes a genetic change within the cell, most frequently the destruction initially of a gene that causes apoptosis (gene p-53). Viruses are very capable of a variety of genetic alterations once they are in cells to convert the cell to the virus's purposes. First and foremost is the turning off of the natural mechanism to cause normal preprogrammed cellular death. In the simplest statement, a cancer cell is one which is immortal. As everyone else here has echoed, how you came to this disease is less important than how you live with it.

You must now not only survive.... you must learn to thrive in the new reality that is your life with the physical and emotional effects of cancer.

Thank you all for your responses. You are a VERY knowledgable group!! Karenng, your comments about
getting checked for EB is interesting. I didn't realize there was a blood test. It is not commonly tested here in the US. Also, Brian, I will check out the resources here on HPV.

I agree with those of you who wrote that focusing on how you live with cancer is important to good health and thriving. Don't get me wrong, I am committed to living. I am very grateful to God to still be here and appreciative of all the hard work healthcare professionals around the world working to help save our lives. The doctors and nurses who took care of me were tremendous.

It is the engineer in me that wants to understand why. It is not idle curiosity or wanting to change things for me personally. I hope, at the very least, I can help my children understand and perhaps one day avoid this disease. Knowing a genetic cause for my case, has direct impacts on my children which could point to clues for a potential cure and/or prevention. Right now, I just can't accept it was dumb, bad luck.


Thank you again for your replies and making me feel welcomed in this forum.

Hi Bret,
Your quest to know what or why is, I think, a common feeling. Congratulations for completing treatments.

Bret, congrats on completing your treatments. Had the same problem you had a little earlier. Found mine while shaving and felt the bulge in my neck from the lymph node. As mentioned, the cause is not near as important as the after affects and how I deal with it. At least to me. I don't have the knowledge or skills to contribute to a cure, so all I can do is try to help others deal with the present and future. Know that there are a lot of folks on this board who are rooting for your continued improvement as you recover from this disease and look forward to your input to those who follow and those of us who have been here for a while.