For those of you who have had reoccurances of BOT cancer, how did you discover it had returned. Did you have symptoms, if so what were they, or was it just picked up by follow up scans.
Also, how often were you checked by the specialists, head and neck surgeons, RO, MO, and what was your follow-up?
I'm just trying to stay on top of everything for my husband's recovery and make sure he's getting what he should for follow up and what symptoms to watch for.
Thank you
nancy

Nancy,
I have had four reoccurances with associated operations at Johns Hopkins. My head and neck surgeon has found some during a routine visit and I have noticed a lump at times and asked him to check it out. During the entire time I have had one CT scan and one PET scan. I have not seen an RO nor MO. In the beginning I saw the doc every three months and now it is once a year. My check up was last Wednesday and I am cancer free. Should you have a specific question I suggest you send it directly to me.
Vernon

Nancy

do not fall for the previous poster's Mexican clinic nonsense if you do contact him directly. In my opinion he is a dangerous person whom you should not rely upon for any medical advice or even suggestions. His mild manner belies his delusions
He has trolled here before drumming up victims for his south of the border fantasy. Stick with doctors here in the USA.
It's a little early to be worrying about reocurrances but my experience with base of tongue cancer is that the PetScans all missed it but my ENT's palpitation of my tongue and her "finger down the throat" checks discovered that it had come back. I was also just examined and no trace of the cancer (even though i did not go to Mexico or Germany)
Hang in there and be aware that many well meaning but delusional people will bombard you with fake remedies.
charm

Did you have any pain with the lump on your tongue or difficulty swallowing? I'm just want to make sure I stay on top of things.
How soon after treatment did it return? My husband's head and neck surgeon is phenomenal and has been scoping him every month with a video camera and manual exam but after the fiasco with the delay in diagnosis, I'm not taking any chances with anyone.
Thanks for the warning, I'm not interested in treatment outside of this country. I'm sticking with good nutrition, fresh fruits, exercise,
thanks for getting back to me

Nancy

I had one glorious year thinking I was cancer free. Two worthless PETScans certified no trace of cancer. Then exactly one year after TX was done, my ENT felt a lump but it was very small and soft. Relying upon the worthless PETscans, I deluded myself that a lump was just a lump until getting a biopsy in January 08. No symptoms, no pain, nothing to indicate the cancer had come back. Again, please don't worry about the future so early, the majority of the posters here NEVER have a recurrence. The only ones are those with bad luck like myself or like the mexican clinic guy who skipped regular treatments and goes to mexico until the recurrence is too big to ignore and then goes back for real treatment at John Hopkins. He is on his 4th time for recurrence - a moving testimonial to El Loco clinic.
Also, see if you can have your husbands tumor tested for HPV.
so far, no body on this board who has HPV positive has posted that they had a recurrence. Just us HPV negative folks.