Tongue Cancer: What are my treatment options?

I can understand your concern about getting the right and the best doctor when youget to Mayo Clinic, Rochester on Oct 17. @jeffk @loli and @deborahe can tell you more about their Mayo experience.

Mayo Clinic has some of the world's best surgeons who specialize in head and neck cancers (head and neck oncologic surgeons). And you will have the benefit of Mayo's approach to caring for you with a coordinated multispecialty team. Surgeons who direct care teams include mouth and jaw surgeons (oral and maxillofacial surgeons) and ear, nose and throat surgeons (otorhinolaryngologists).

You might be interested in this video where Mayo Clinic physicians Daniel Ma, M.D., assistant professor in radiation oncology and an expert in treating head and neck cancer, and Eric Moore, M.D., professor of head and neck surgery talk about HPV-related Tongue and Tonsil Cancer

@rkaspet, keep asking questions as you prepare for your visit.

Hi,
I can understand your concerns about traveling for a consult and not knowing what to expect. I would suggest calling the Otolaryngology Dept soon and explain your situation and concerns. A conversation before your visit may ease some of your worries and help you feel better prepared.
Wishing you all the best. You will be in good hands.
-Deb

I have an appointment tomorrow to go over cat scan results any ideas on what I am looking for and questions to ask ? I haven’t eaten or slept for very long I’m almost a week now. Feeling like I made a mistake and I should have been following up at least every 2 months but after 5 years I really thought I was a lower risk. If it is contained how quickly should I expect the sugary to be scheduled would the Mayo Clinic do it right away ? Thanks for your help it’s greatly appreciated

It's hard not be anxious and I'm not surprised that the news of tongue cancer has severely affected your sleep. You're wise to put that worry into action by preparing a list of questions as you get ready for your appointment tomorrow.

I found this great list of questions that you can choose from:
- Oral and Oropharyngeal Cancer: Questions to Ask the Health Care Team https://www.cancer.net/cancer-types/oral-and-oropharyngeal-cancer/questions-ask-health-care-team

I would print it out if you have a printer and highlight the questions most important to you.

Don't worry yourself about "what if's" or "I should have's". You're taking care of it now and that is all that matters.

How soon you can be scheduled for surgery will be based on availability of the surgeons and operating room, as well as the urgency. You can submit an online appointment request to get a second opinion from Mayo Clinic. Here's more info: http://mayocl.in/1mtmR63

You might wish to do talk with Mayo Clinic after your appointment tomorrow when you have more info about your CT scan and the cancer. I will you all the best tomorrow. Is your review with an expert at Roswell Park?

I was diagnosed with squamous cell carcinoma in the back of my tongue. The tumor was small, but had spread to one of my lymph nodes on my neck. I ended up with 12 weeks of induction chemotherapy followed by 7 weeks of chemo and radiation (35) treatments. I completed the treatments 6 weeks ago and just had a CT scan of my neck and chest with no detectable presence of cancer. I won’t lie that the side effects of the treatments were rough, but it looks like the end justifies the means. Best of luck to you in your treatment journey!

I had amazing news today. I found out that the cancer is just on the outside of the tongue and no lymph node involvement. The Dr. said I am considered to be in stage 1. The cancer that had hit me caused pain right away so I could catch it. I was very scared but now I am confident things will be ok. So now I need to get in to get a PET scan before he can do the surgery anyone know any ideas on how to get a quicker pet scan my hospital says they can’t get me in till October 26.

I had the same issue with PET scan scheduling. I notified my Oncologist, and he was able to use his contacts to schedule it sooner. I hope you have the same success. Congratulations on finding out that you have only stage one cancer. I pray that your future treatments go well.

Hi I am still trying to get my PET scan moved up and it is currently scheduled for the 20th. Still having a lot of pain on my tongue so it is still very upsetting wondering if everything will be ok etc. I am going to see a Dr at the University of Rochester on Monday. I am wondering if there are different techniques and surgical technology at different hospitals for removing the cancer from the side of my tongue or are they all the same ? The last time I had tongue cancer was June of 2012 so it was gone for almost 11 years is this abnormal? Things I read say it usually doesn’t return after that long ? Thanks for your feedback it is greatly appreciated.

I can only comment on my treatment for HPV related squamous cell carcinoma in the back of my tongue and my right-side neck lymph node. It was radiation and chemotherapy. I also know of a person who had tongue cancer near the tip of her tongue and had surgery to remove as the only treatment she had. Both her's and mine worked in each of our cases. Another person I know had proton radiation therapy instead of traditional radiation. I believe it depends upon where the cancer is present, the type of cancer, risk factors such as if you are a smoker or not, and the potential side effects. I would get several opinions on treatment options if I were you.

Could you comment on side effects from the radiation/chemo treatment you received? Is there anything one can do to mitigate the side effects. How were teeth and gums post treatment. Any and all info can put my mind at rest. My husband is about to embark on his treatment for SSC HPV+ of the right tonsil and right side lymph nodes. His upcoming appointment with the dentist for clearance is tomorrow. Thank you and happy to hear your treatment was successful.