Hi,
My name is Benfry and I live in New Jersey. My dad, who is 54 years old was just diagnosed with tongue cancer. I am very scared... He is coming home this week and I will take him to get a second opinion and tonight I am going to look for help at the hospital to see if any paperwork can be started. At first I felt so hopless but now I am trying to get any information I can.. Can you please let me know anything about it.. I was reading the survivorship facts online and they link rates to stages.. My dad has been having sores in his tongue for who knows when, probably 4 months. He would not tell us before but I will become his shadow as soon as he arrives. ...Are sores the advanced stage in tongue cancer?
Please help

Hi- I would suggest a second opinion at a TOP teaching/ cancer hospital such as Sloan Kettering in NYC. Johns Hopkins Baltimore etc. Depending on where he lives & his insurance, it would dictate which hospital to go to. Do a google search US News Best Hospital Head & Neck Surgery to find the closest ones. In my case in LA the surgeon was the "Captain" of my treatment plan. Sometimes a Tumor Board makes a treatment plan, but in any case get to the best doc- no local yocals who treat a few cases a year. Docs with only hammers tend to view everything as a nail. Tongue cancer is curable if caught early and treatable at any stage. Good luck to you both!

SCC 2004 T1N0M0 L hemiglossectomy forearm flap reconstruction of Tongue
Doing Well

Hi Benfry - You sure have come to the right place for the best information and lots of compassionate help! When my son was diagnosed with tongue cancer, he also had put off telling anyone or doing anything about it. He had a lump under his tongue for several months until the pain got so bad he finally went to his dentist. The reason he had pain was because the cancer cell was attached to a nerve which is not the case for many cancers which are not accompanied by pain. Everybody is different and many have survived later stage oral cancer just fine. My son's dentist referred him right away to an oral surgeon who performed a biopsy and was then referred to a surgeon at a Comprehensive Cancer Center. His was stage 2 squamous cell cancer and he's doing just fine now, 4 years later. I think the scariest part is when you are still finding out and deciding the type of treatment. At least that's what it was for me as my son's caregiver. Once he had the surgery and we had an established routine of care, I was glad to be very busy doing what needed to be done. I'll be thinking about you and your Dad and hoping for the very best outcome. Please let us know how you are both doing.

Welcome to OCF, Benfry. I hope to calm your fears by letting you know that a sore or tumor is not necessarily a sign of advanced cancer. I had 3 seperate tumors and all three were stage 1. You have found the best online resource on oral cancer there is. We will help yo and your father thru this disease. Glad to hear he is getting a second opinion. I have included a link to the top cancer centers at the bottom of my post. This info was found on the main OCF pages. There is an enormous amount of info there as well as on the forum pages.

http://oralcancerfoundation.org/resources/index.htm

Within all the institution specific stuff on the resources page link given to you above, is a link to best hospitals. I have copied it for you here. This is an unbiased look at the top facilities in the US.

http://health.usnews.com/best-hospitals/rankings/cancer

You should not let geography limit your dad's treatment options, though there may be other reasons (insurance, finances associated with travel, etc.) that restrict your choices. If that's the case, where in NJ are you?

If you are in South Jersey, several OCF members have been treated at Fox Chase Cancer Center and the Hospital of the University of Pennsylvania, both in Philadelphia and both well-regarded comprehensive cancer centers. Memorial Sloan-Kettering has an office in North Jersey, though surgeries are still done at the main hospital in NYC.

Thank you all so much for your support and for sharing your experiences with me. I really appreciate it. It makes me feel much more calm. We live in Fairview, North Jersey. Today I went to Hackensack Medical Center because they return a voice message I left yesterday requesting information on their Cancer Center. I also requested a New Patient Appointment at the Cancer Institute of New Jersey through their website. My dad was away in Ecuador and my mom made him go to the doctor there to check those sores. This evening she also send me the diagnostic results and the doctors in Ecuador say he has 2 tumors, carcinoma squamous cells of 1 and 2 cms respectively in the posterior part of his tongue, they also said it has spread in the lymph nodes. So I will start by going tomorrow to the other hospitals I have called to get a screening here... Thank you so much again. I will read carefully all the information you have provided me with. Thank you again... I will continue posting and updating our progress. Thank you for making me feel so welcome...
Best wishes,

Benfry

If your dad's insurance permits, seek an appointment at Memorial Sloan-Kettering in NYC (link is to the Make an Appointment page) or its facility in Basking Ridge, NJ. In the U.S. News rankings, Sloan-Kettering vies with M.D. Anderson in Houston as the top cancer center in the country. As another poster here noted recently, you get only one shot at a first treatment of this disease, and you want it to be from people who have seen a LOT of oral cancer.

The quote below was posted by a relatively new OCFer after her husband was diagnosed with OC by an ENT. Since she lives in New York City, several people here encouraged her to get a second opinion at Sloan-Kettering. She posted this in mid-February after making an appointment there:

[quote=SusanW]The ENT guy said his practice (three guys) sees about one case of oral cancer a year. Sloan sees 3500. A bit of a difference. The strong message you guys sent me about where people should go is so important. I hope the word is out there.[/quote]

Benfry, so glad you found this forum. I think people here could answer just about any question you might have and they are very, very supportive. I will be keeping you and your family in my prayers and sending positive thoughts that all will go well for his upcoming appointments and treatment.

Nancy T

Hi all,
Thank you, thank you.
I called Sloan-Kettering today to try to schedule an appointment and sent them the records my mom forwarded me. They told me they received them and would call me tomorrow to schedule an appointment. I asked how long on average it takes to get one and they said it would take 2 weeks probably so I will in the meantime find out more information. Is two weeks too long? The last weekend seemed an eternity. My dad does not have insurance. I think he have not seen a doctor in a very long time. So we are paying the consultation fee and applying for charity care or financial assistance at the hospital. For now at least he will get checked here in the US. I hope by tomorrow I will have an appointment scheduled. My dad seems very calmed and he is doing well, he wants us all to be calmed and patient. I will see him tomorrow finally. I will be calmed until then and will continue getting informed. Thank you so much. <3 I will keep posting.