Welcome to OCF, Linda! You're in the right place to get info and support to help you get thru your upcoming treatments and recovery.

We have had some members who have been thru proton therapy. Off the top of my head I cant remember anyone besides Paul who has had the proton treatments, Im certain we do have several others (they may not be actively posting). Most of our oral cancer (OC) patients/survivors who went thru rads were given IMRT. At the end of 2017, there were only 27 US facilities that offer proton therapy with 16 more being planned to open. Regardless, Im certain we can still help you At the end of my post, Ive added a link to our main OCF site. The link goes directly to the Treatment section in the Understanding tab. Theres page after page of info that can help you learn a great deal more about your cancer, treatments (specifically rads), etc. If you would like to read posts about proton therapy, type proton in the white search box near the upper right of any page. An informed patient is a strong advocate for themselves.

Many of our members have been treated at MD Anderson(MDA). I have several friends (a few of their top physicians too) who have been treated there for their OC. MDA is one of the top comprehensive cancer centers (CCC) in the US. The tumor board meetings are where all the specialists meet to discuss each individual case. As the patient you are also allowed to attend. If you decide to be there take someone with you for an extra pair of ears and to take notes. Prepare a list of your questions to take with you to the meeting. I suggest asking again about your HPV status. I dont quite understand the weekly HPV status... to me its either a yes or no answer if you're HPV+ or HPV-. The tumor board meeting is the best place to speak openly to get direct input from the many different specialists who are among the top doctors in their field.

Main OCF Site, Understanding/Treatment section