i was looking for someone else with this. my hubby has nasopharyngeal cancer with squamous cell carcinoma (NPC + SCC). it is so rare in the U.S.

thanks,
teresa

Teresa,

My tumor was close, in the oropharynx, (soft palet). That would be just in front of where your husbands SCC is. My location was also very rare and in a place they prefer not to operate on considering the quality of life issues regarding the removal of the soft palet.

I�ve had good success with the radiation so far (out of treatment 4 weeks) I had the newer IGRT (image guided radiation treatment) which is IMRT with a CT type scanner attached.

The big deal my doctors made when I was diagnosed was how invasive the SCC was in the tissue (I was minimally invasive to non-invasive T3 = 3 cm in size). What that means is that it was not deep in the tissue but fairly spread out. I had no involvement of the nodes so they recommended no chemo.

Please post as much of the technical information you are getting from your doctors here. There are folks here who are great at bringing all of this information down to a scale I can understand.

Although no posters here had exactly the oral cancer I did, the information, support and other help I received certainly saved my mental health as I moved through the process. I was a much better informed and prepared patient and self advocate also.

Kelly

Teresa,

Correction,

Others here did have exactly the same cancer I did (SCC) Just not the same location.

Kelly

Nasopharyngeal cancer is SCC the vast majority of the time, so the first words describe location and the second the specific cancer type. NP cancers have historically been the realm of smokers, nickel factory workers, (knowledge derived from the excellent Norwegian medical database that tracks people's vocations along with their etiology) and people that have a persistent Epstein-Barr virus infection. Treatments for them are the same as for oral cancers, drugs are the same, and with the exception of an inch or so of anatomy, they are just like the rest of us. Head and neck cancers are primarily oral cancers (85%) thyroid and laryngeal cancers (about 12%) and the remainder mostly NPC, with a percent or two tossed in as rare auditory cancers, and other things only those they get them have even heard of. So you are family here in this group. Not totally surprising, an article was published in the last 6 months in a peer reviewed journal, documenting a NPC that was definitely back tracked to HPV16. One oddity about head and neck cancers is that brain cancer is not one of them. It is a cancer designation all unto itself.

thank u for explaining this a little more. the exact dx the MO gave us was undifferentiated neoplasm of the nasopharynx with carcinoma (he said it was a squamous cell). he said an easier term was nasopharyngeal carcinoma. that is why i seperated the two. his primary cancer is in the nasopharyngeal tonsil.

he had a large "pickle size" lump in his neck, which is the reason for the original dr visit. within 2 weeks he had 4 biopsies, ct scan, pet scan, scopes and a port placed. (i know yall know his pain on the countless dr visits and proceedures following a cancer dx).
they originally dx him with lymphoma. our second opinion led to the correct dx. his tumor in the lymph node was 3.5. he had lost his hearing in that ear. it seemed to take them FOREVER to dx him. his last biopsies were done at M.D. Anderson.

i found out early on that we were in the head and neck family, and how rare NPC was in the U.S.

i am doing everything i can to try to fatten him up, so far ive managed to put 7 lbs on him and 15 on me--something is wrong with that picture. he is in good health and already thin since he lost 30 lbs thru chemo.

thank u for ur support.
teresa

Well, it makes me feel better that he is at the number one institution in the US. These guys don't make mistakes, and have seen it all. Please PM me with the doctors names that you are seeing. Many of OCF's science board members are in the H&N department at MDACC, and it is my personal cancer alma mater.

we go to HCC- houston cancer centers. Dr. Sethi and the group are all MD Anderson trained MO that formed their own group. his biopsies were done there to confirm our MO dx.

we were just automatically going to go to MDA, since we knew it is the best cancer center in america, but after careful research chose HCC. my hubby really loves his MO-that is HUGE-since he does not like to go to a doctor.

he had his post chemo/pre rad PET scan done today. we get the results monday.......