I just noticed too what Eshwar stated. I don't know believe it or not exactly the #'s and all that stuff you all type that Ron was diagnosed with, I'm going to have to ask his doc one of these days for darn sure. But, Ron's cancer was underneath his tounge where it connects and it I would say was an ulcerated tumor also cuz it was like a hole there and thank God when you see all those blood vessels in there that the way his was so big, that what happened to Ken didn't happen to him. So yes, I don't understand why they didn't do the surgery right off the bat also. Has anybody else here had that bad of a hole from the cancer and not have their tongue removed and just had radiation and chemo? I need to pay more attention to those diagnosises. Not a dr so I really don't understand all that, all I know is everybody who has cancer on here has had some kind of surgery to remove it right away. So now I'm learning more about this cancer in particular. His was like the size of a quarter I'd say or so I thought it looked that way, I wasn't staring at it too long when he showed me what was going on in his mouth. I got to call the docs office and see if they can tell me exactly what he had medical terms wise. I don't know what N0M0 means after all I've been through with Ron, I feel dumb now... and I want to ask bout HPV too.

@ Suez, don't feel dumb. It's usually a case of don't ask don't tell--meaning, that they don't tell you if you don't ask. I asked for staging which gives those letter and number combinations. Squamous Cell Carcinoma of the Head and Neck has specific staging parameters. T stands for tumor, N stands for node involvement, and M stands for metastases (distant rather than in the local/regional area nodes.) After the letters, the numbers (and small letters) signify how large and invasive is the tumor, how large are the nodes as well as node location and how many are involved. Distant mets are either present or they are not, for staging purposes. When there is an unknown factor, it is listed as an X. For J, he was TXN2cMO which means he had an occult (unidentifiable) tumor, had more than one lymph node involved in different areas with a node over a specific size, and he didn't have distant mets. His "TNM" put him at a Stage IVa cancer. Later, his "T" changed from "X" to "0" meaning there isn't a tumor. If you Google staging for SSC HN, you'll get a list of places to go to find out more.

Sorry for going off topic.

http://oralcancerfoundation.org/facts/stages_cancer.htm

Staging also dictates treatments (at least if you want to follow what the big NCI designated institutions are all doing.) There are NCCN treatment guidelines for every stage. And the current standards of care for most, except very early stage OC's, are chemo and rads. You can read the NCCN guidelines for treatment on the main OCF web site.

http://oralcancerfoundation.org/treatment/guidelines.htm

We keep it all here on the OCF web site and get regular updates from our NCCN partner so you don't have to chase all over the web looking for something you can trust.

Now, why didn't I remember that Brian would have nailed that one down a long time ago?! As much as I'm here, you'd think I'd remember how much information is contained on the site, that it is current and comprehensive. I guess that shows I come here a great deal of the time for the company. I love my OCF family.

Thank you, Brian...for everything!

Suez,

Bill had a very large ulcerative tumor on the left tonsil which extended into the base of his left tongue past the half way mark. Surgery in that area is pretty invasive and life altering so normally its saved for salvage surgery if chemo/radiation does not work.

So, he is one that did not have surgery..only chemo and rads and we are almost 4 years out with clear reports.

Food for thought.

Deb

For the record, Alex had stage IV oropharyngeal cancer with involvement of base of tongue (BOT) tonsils and nodal involvement on both sides. He was classified as inoperable because loss of function would have been catastrophic. He had no surgery and was advised to undergo induction chemo to shrink the tumour (approx 4cm) then chemoradiation to destroy whatever was left. 12 months out, he is still with us and working his way back to health.

With regard to the 2nd opinion from Dana Farber and the possibility of a law suit, a key word might be "marker" which suggests their pathologist did NOT diagnose cancer but maybe saw a warning sign. Unfortunately medicine is not an exact science and judgements need to be made - I don't see anything in your original post that suggests malpractice although obviously I do not have all the facts and there may be other reports that suggest differently.

Lastly, Alex and I are very, very sorry to hear of your loss and if action helps you to deal with the hole left in your heart, then talk to lawyers, doctors, pathologists and whoever else about what happened. Even an eventual realisation that Ken's death was nobody's fault (including yours) may give you some comfort in knowing that all that could be done, was.