Bruce, take a step back and look at the big picture. This is cancer, and a very aggressive one at that. Many patients will only have one shot at hitting it with all the tools to eliminate the cancer the first time. You do not want to fall into that category of patients who have a recurrence saying "I should have....".

Numbers may seem like a logical way to decide what treatment route to go with. However, everyone is an individual and numbers dont always tell the whole story. If they did I would not be here right now.

Being HPV+ means you are in the group of patients who respond better to radiation. The HPV+ patients have less chance of recurrence. At this time the treatment for HPV+ and HPV- is still the same but it could change to less in the future. As long as you are not a former tobacco user, being HPV+ is a good thing when it comes to having OC.

Radiation is not a walk in the park for most patients. A few lucky patients will sail right thru with little side effects and recover quickly with hardly having a day where they are very sick.

If you have had a second opinion that could help in making this decision. Have you gotten a second opinion with a CCC team of doctors?

Christine,

Thank again and i didn't even meet with my RT doctor yet. This isn't schedule until the 19th. Why do they make you wait so long after surgery? Do you have to be all healed prior to getting treatment?

As Cheryl mentioned, HPV-16 related HNC is usually in the oropharynx, like base of tongue, 90% of the time, as opposed to the oral tongue, which some say HPV-16 may occurr there, but some say it could be misclassified as oral tongue, and be an extension of BOT cancer. Another is HPV related cancer outside the oropharynx is found to respond differently. As far as RT after surgery, the ideal time is 4-6 weeks, but depends in healing.

Good luck.

thanks Paul and it is HPV 16 positive. it was on the way back of my tongue and about the size of a jelly bean i was told by my surgeon.

Bruce,

As stated before, you want to kill cancer with all guns firing. It is sneaky and evil and will hide and attack you and kill you if you do not get it first. Simple as that.

If the tumor board recommends seeing a RO for radiation you should run and wait at the door. Radiation therapy sucks but it will allow you to live on.

Now, there are two schools of thought. Minimally treat and hope you got it or go aggressive, all guns blasting to kill it off. Often the decision hinges on side effects and if you are very young then it seems there is a bias to use less treatments with know severe long term side effects. The older you are the more likely they are to hit you hard the first time. It takes a lot out of you and avoiding recurrence is more important. If you are you your body can take more treatment and recover better than us old farts.

Good luck, Don

Sounds like BOT, which is different, and treated differently than oral tongue, and more likely to be HPV related. BOT (oropharyngeal) can be a pesky cancer, difficult to treat, due to its deep vasculature, high lymphatics, and access to lymph nodes. p16 staining, a tumor suppressor protein, used by some institutions to identify HPV-16 positivity, is usually the case, but not always, in case it is the oral tongue, and p16 positivity, HPV negativity by other testing, can mean a more aggressive cancer. I would find out which it is oral tongue vs BOT. Early stage oropharyngeal cancers can be treated with surgery or radiation, but most are late stage, and treated with radiation and or Chemoradiation also.

Good luck with everything.

Paul,

Thanks for the comment. Yes i had surgery on the back of my tongue and one lymph node removed. They told me it is HPV positive 16.

Bruce - I really feel for you. Wish myself or anyone had the right answer for you. Unfortunately, there isn't magic answer. No one can tell you if it will rerturn or not without the rads. It's maddening!! My situation was different bec they never found the tumor the first time, ony found the node involvment, had a neck dissection and I didn't have rads. Tumor reared its ugly head the second time with no node involvement, I had TORS (trans oral robotic surgery) to remove the tumor and decided to do radiation only (chemo was not recommended) I have to say the small % difference and the fact that my RO said that either way I went would be a reasonable decision, almost put me over the edge. But he highly recommended radiation and I trusted his opinion, so went with it. I do not regret my decision with both experiences. Do I have dry mouth?yup..do I hate it?...yup..does it get in the way of my job?...yup. However, I made my decision and refuse to look back. I think the biggest thing is not to look back after you have made your decision. I can so relate to the agony of the decision. Praying for the best for you.

Bruce, it's vital to seek second opinions as several folks have suggested.

I've done it twice, and both times the treatment recommendations from two top-notch institutions have been astonishingly different. Asking the docs for the reasons underpinning their recommendations will give you confidence in your decision. In my case, after surgery one team said rads only. The other said rads plus chemo because of risk factors specific to my case, citing by number the relevant clinical trials. I'm no doctor, but when I looked those studies up my blood ran cold; I understood enough to know that I really did need to fight aggressively. I switched hospitals on that basis. My point isn't that you should or shouldn't have radiation; my point is that this decision is too important to base on just one medical team's particular experience and bias.

You don't have to wait to make an appointment with another hospital. Large teaching hospitals have better patient outcomes and would be ideal to consult.

I sense that 90% strikes you as pretty good odds. Find out if other docs are also that optimistic, since it seems crucial in your decision making. Not trying to be alarmist, but I've never heard that rosy statistic before.

I remember how tough it was to be in your shoes. Sorting out the options isn't easy. You're smart to come here for perspectives and you're on track to make solid choices that are right for you.

Good luck!

Bruce, that is correct.. No Rads or chemo. The RO's opinions were split, several recommended Rads, several recommended monthly screenings and Rads only if something developed. You should push for earlier sessions with RO's, even if you need to go out of your network, get several opinions from top Cancer centers. As Christine points out, most people can tolerate Rads and recover well.