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.

To add the info, go to your own profile, scroll down to “signature” and type in your own info.

Kevin, from what Ive learned about oral cancer (OC), its not like other cancers... it is not hereditary. Out of the thousands of OC patients both here and those Ive met in person over the years, only one person Ive ever met had a parent who also had OC. Its been several years since I met them and so many more patients who needed help followed, Im sorry but I can not remember any other points of their illness like if they both smoked, drank or were HPV+. Those patients who have HPV+ tumors have better survival odds than those who are former or current (hopefully not!) smokers and drinkers. Theres also quite a few here who have developed OC but their doc isnt able to determine what caused it, nothing to link it to anything hereditary. Approximately 5-7% of OC patients have no known cause. Not that it really matters that much where it came from, the cancer still must be eliminated and treatments are the same anyway. More info in the links below.

The signature info has not and will not ever be compiled. At OCF, we protect our members identities by everyone being anonymous using screen names. Their personal identifying medical info that they have shared in their signatures is there NOT for data collection, its to help fellow members to better answer their questions more accurately. This info is NOT stored or to be shared with any individual, business, or government organization...never! It is also not compiled as it is not scientifically proven and often its not kept up to date. That type of info wouldnt be accurate and includes only things the member who is writing the signature feels is of importance. Plus theres also HIPAA laws protecting personal medical info. Since advertising is prohibited and our online message board is regularly monitored 24/7/365 anyone coming here for unscrupulous reasons will never get very far before they're permanently banned from our site. Anyone joining our group to gather patient info has joined the wrong group. This is explained in the OCF rules every member agrees to abide by when joining our site. In fact before a new membership can be fully activated the new member must agree a second time to abide by OCFs rules.

In the US there are guides doctors go by to create treatment plans. Im sorry but I do not know how this is done in other countries. The flow chart guide is how physicians know what are the best ways to get the best results depending on certain criteria. This has been done over many years and is regularly updated to reflect the best tried and true methods. The NCI (National Cancer Institute) site will better explain the complex manner that goes into creating a treatment plan.

Being new here, you have not yet learned all the ins and outs of our online group. Im sure you will easily pick it up in no time. The best thing would be to stop in often, read posts, putting more posts up and become familiar with using our search function. OCF has been around for a long time so just about any question anyone can think of has been previously posted and discussed. Im sending you a private message (PM) with a link thats going to help you quickly and easily learn the ins and outs of the forum, it also elaborates on Glorias above post for adding a signature. Look for and click on the tiny flashing envelope next to the My Stuff tab which is in the middle of the toolbar on any page.

I noticed your surgery was already set up for the 30th. Without all the test results in and without the tumor board meeting where all specialists from the CCC meet to discuss each individual case Im surprised you are scheduled already. Just remember... surgeons cut, thats what they do and once its been removed it can never be put back. I have absolutely no info about the specific doctor or facility you have selected but prior to surgery patients should always seek a second opinion. Its just like car buying (but with a much more serious situation), you wouldnt want to buy the first car you looked at without doing any comparing. Im wondering about a couple things... you said the tumor quadrupled in size but you hadnt gotten test results yet and why you went to your family doc instead of waiting for the oncologist. Many family doctors (and surprisingly even many dentists) are not experienced with treating oral cancer patients and wouldnt know up to date info or be able to help with anything to do with the cancer. I know being newly diagnosed is a very scary time, especially when you arent familiar with the disease. Everyone is afraid of the unknown, every single person. Please relax, you are among friends. You have us to lean on and learn from to help make this as easy as possible for you. Take this one step at a time and try not to get too far ahead of yourself. Most of us are our own worst enemies when it comes to the "what if..." way of thinking. Waiting can be agony with so many questions swirling around in your head. Do your very best to avoid negative thinking, stay busy doing positive things and focus on what is within your control. The extra stress caused by "what if..." is not only unproductive but it an actually makes everything even harder. Soon enough you will begin being treated so you may want to start preparing by eating all your favorite foods, desserts too. Your ability to eat will likely be compromised for a while so make certain you do not go into this with any cravings. If you are slim or average in size putting on a few pounds before being treated would be a very good idea. Im sure this subject will come up again before you start any kind of treatment. Also within your control is who you discuss your illness with. Anyone you tell who offers their help tell them when the time comes you will let them know what they can do. Start a list, write down their name and full contact info. Theres a million and one small things that can turn into a huge help to you when going thru cancer treatments and recovery.

Think positive and hang in there!!!


NCI site, cancer treatment

Main OCF site, Understanding oral cancer section

Kevin -- I just went through this earlier in the year. Do they know how much of your tongue will need to be removed. I lost about 3/4 of mine which was rebuilt with tissue and vessels from my arm. Is this what they are planning to do, or is the tumor not deep enough to require much to be removed?

If they need to remove much of your tongue, we should talk further. I found it to be a pretty big ordeal, but I am doing well now (well enogh that I'm actualli on safari in Africa right now), and I am cancer free -- yeah! I had great docs but was not adequately prepared for what the recovery would involve.