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.

Hi Benfry, What a great daughter you are, your Dad is blessed to have you doing so much for him already. I feel for you as it is easy to hear what a frantic state you are in. With good reason, as this diagnosis is never easy to hear. But be comforted honey, this is very do-able! It's not an easy treatment, be it surgery, or radiation & chemo..or all 3. We are living with the benefits of advanced medical treatment options. Your Dad will pull through this just fine. There will most likely be side effects when all is said & done. Us survivors all have some...but we got through it! Before you know it, your Dad too will be "cancer-free" Best of luck!

Hi all,
Thank you so much for your support. I have no words to thank you. I feel so much better. In the beginning I was so shocked and worried because I did not know what was going on, the first doctor that saw him in Ecuador said they could not operate him there. We got my dad an appointment in Memorial Sloan-Kettering yesterday. They reviewed his slides and MRI so they found the tumor is localized and has not spread. He is in stage 2. His surgery is scheduled for 8/11/10. He will have a partial glossectomy and neck dissection. I am still worried and will always be alert but now I am calmed and have hope.
Thank you.

Congrats on the good doctors visit. Im sure you are so relieved!!!! To me it sounds like its great news, much better than what they told him in Ecuador. Im happy that its treatable. This is exactly why everyone here said to take him to a cancer center.

Has the doc talked about doing chemo and radiation? Or will your dad be treated with just surgery? Hope your dad eats all he can right up til his surgery.

Thanks for updating everyone. Hope you and your dad enjoy this beautiful day

Hi Christine!
Thank you!
It was great news. I feel better now! I am still very nervous. I will be until the day of the surgery. The doctor said my dad will be evaluated about a week after the surgery to see if he still needs radiation. He did mention he believes surgery will be enough. He is not suppossed to have any aspirin before the surgery. Now I am trying find out more info about his tests before surgery but he has a hold until we get his insurance.. I spent the weekend collecting information the insurance co might need. This week feels endless I have not been able to sleep, I guess it is normal, but we are taking it day by day. Can he really eat everything or should he avoid some foods? They gave him a list of things to avoid.

Thank you for everything <3 I hope you enjoy your day and we'll keep in touch

Benfry

Thanks for the update. Hope your dad gets to eat all his favorite foods. It will be a little while before eating is the same so its best to eat lots now. Of course, if the doc said to avoid something, listen to the doc. Best of luck

Hey Benfry!! Thinking o u and your family today as you prepare for surgery tomorrow. I will keep u in my prayers. Please keep us posted!!

Thoughts and prayers go to you and your dad. Very similar to what I just went through.

Hope the surgery went great. We are using Sloan and have a very high regard for the Drs there. Your dad is in good hands.

Two weeks really isn't that long but seems to be when you are involved. Good luck to your dad and welcome aboard. The postyers here have been thru most of the treatments and have great advice if you ask them.

Thank you everyone I really feel better every time I come to read your postings. My dad's surgery had to be rescheduled due to paperwork to 8/18/10. The surgery date was confirmed today I am praying it won't change. Last week was torture but we have a lot of hope now and I hope he gets to finish this part of treatment soon. I feel what you go through and I wish you all the best. I will continue to keep you updated. I'm counting the days... :^) :?

So glad things are moving along and that you are feeling better. I'll be thinking about you and your Dad and sending you positive thoughts and prayers! Let us know as soon as you can how it goes.

Hi everyone,
My dad's surgery was today, the doctor said it went well and that he was happy with it except for one lymph node he doesn't like. We will get the results in 10 days. I am very happy. He is recuperating from the surgery now. =)

Benfry

Very happy to hear that surgery went well. Thanks for the update!

Just wanted to check on you and your Dad... hope things are progressing well and that he recovers quickly.

D

Thank you very much <3

My dad is feeling much better now. He is in pain though but it is normal. He was told he will probably come home tomorrow. He can eat now puree foods and he has to walk a lot but he says he feels sleepy all the time. He doesn't want to talk sometimes and his neck hurts. I guess it is normal. I forget the name of the tube that is connected to his neck to drain fluids, it will probably have to be removed tomorrow because he is supposed to go home... He still didn't go to the bathroom so he was given laxatives today. I am so happy he had his surgery, I really am so thankful... and now I feel guilty because I still worry and feel anxious like the first time. I have a permanent pressure inside my chest and can't stop thinking about the future.. I know I should just worry about today. Deep breath...

Anyway, thank you all for checking on my dad. I have been reading about many of you.. you gave me so much strength and continue giving it to me...

Best wishes,
Benfry