I am theaterkev and was diagnosed with cancer last week and had my MRI last week, a PET scan yesterday. I am 54 years old, and the cancer is growing quickly from the rear underside of my tongue. I do not know how long it was there before I discovered it, except the underside of my right side of the tongue was grey and biopsied a year ago and it was negative. My dentist asked me about it in May but there were no signs then. A week ago Monday, I felt something there and took myself to the emergency room where they referred me to Dr. Salvatore Caruana at Columbia-Presbyterian who seems good but busy. It is hard to chew and I feel some discomfort, but am hopeful and am doing research. I did research initially which is what sent me to the emergency room two weeks ago. I do not have my results yet but how is Columbia and my doctor? This is a tad scary and I am losing weight. Thank you for whatever you might tell or help me with.

I'm a caregiver but have found wonderful guidance from several on this site. So sorry you are dealing with the unknowns right now.

Welcome to OCF, Theaterkev! Im very sorry to hear about your cancer diagnosis. You have found a great resource to help with info and support. Read thru posts here and also on the main OCF site to learn about your illness. An informed patient makes for a strong advocate.

I know your head must be spinning right now after just being diagnosed. Soooo many "what if's! Take it one step at a time ands lean on us, we will help you get thru this as much as possible. As far as rating the treatment facility and a specific doctor, Im very sorry but thats something we arent able to do. Our sited is science based meaning only scientifically proven methods are recommended. OCF, we have members from all over the world who have been treated at many different places. Even if you connected with several people from your area, they may not have been to that facility or doctor plus its only their opinion, not based on the doctors proven track record. There are many online websites where they have criteria in place used to rate medical professionals and facilities. Beware when looking at results too! One or two persons opinion of a doctor would not be a true reflection of the skills that doctor possesses. The rating could very well be the doctor was judged solely on their bedside manner which isnt overly important in the whole scheme of things. If you would ask anyone you know who had cancer whats "the best" doctor/facility, they will probably tell you it was the place they went which isnt anything to go by either. I know this is very confusing, but picking the right place and doctor is very important!

What we advise new patients is to find the very best medical care you can, most often a second opinion (at a different facility) is a good idea, especially before surgeries. If at all possible going to a comprehensive cancer center (CCC) would be an excellent decision. CCCs use a team based approach so all doctors are working together, they would be the most experienced in treating oral cancer (OC). All the specialists get together at whats called the tumor board meeting (patients and caregivers can attend too) to discuss each individual case and create a treatment plan together. Having all specialists on the same page makes for much better open communication among those who are treating each patient. CCCs also attract the brightest and most skilled physicians and use the newest equipment and facilities. Ive included links to lists of the top US facilities and the main OCF site for even more info.

Good luck with everything!!!

NCI list of CCCs

US News Best Hospitals List

OCF main site --- Diagnosis

OCF main site --- Treatment

In NYC there is one of the top five cancer centers in the US. Oral cancer hits only about 1% of the population so it is important to get somebody who specializes not just in cancer but in oral cancer. You'll want to check out:
https://www.mskcc.org/?gclid=EAIaIQobChMIipaBnryS3gIVGsDICh0mOglsEAAYASAAEgIGDfD_BwE

Thank you so very much for your detailed responses. I am at my primary doctor now as I can not reach the otolaryngology doctor and the tumour has quintupled in a week. It is scaring my people and I am transferring duties just in case. I do not have the results from the MRI or the PET scan as yet back. It seems odd they would not share that quicker.

Thank you so much. I was just told they will operate on the 30th and that it shouldn't be too bad thankfully. They will remove the affected part of the tongue and the lymph nodes but it did not get anywhere else they said.

My doctor seems quite good thankfully. I was concerned as how would one ever know what one should do in such a case? I am amazed at how many people I know seem to have had it though in New York City. It seems not to be discussed until someone you know contracts it.

I am worried that it might be hereditary but none of my paternal side of the family or maternal side of the family have ever had this. My grandmother died of stomach cancer in 1963 before I was born. She is the only relative we can confirm that ever had contracted cancer. I will have to warn my son and his mother.

How do I add all of that data that you guys add to the bottom of the signature? That data could be quite useful if someone compiled it I would think

Hi Kevin, looking at your doctor's biography, he seems quite capable and is part of a Comprehensive Cancer Center (CCC) that most will recommend to you to go for treatment. Hopefully you will have a similar experience to me. I had leukoplakia on my tongue for three years before a sore developed last fall. It was cancer and I had surgery in February and then radiation from March to May, 30 treatments. So far all my PET scans are clear and I see my Dr every month. The surgery wasn't too bad but I did not have any lymph nodes excised. You may either follow up with radiation or radiation and chemo after your surgery heals up. This is a scary time but glad you have surgery scheduled so soon. Take it one day at a time and come back here with any questions or concerns you have.

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