I am not sure that this is how to post my question on cancer survivors. IN 1982 my uvula fell out my ET did an exploratory surgery and told me that I had cancer and that it was terminal, squamous cell to go home and get my affairs in order. A family member called U C L A for a second opinion. After the visit we decided to go with the radiation therapy half way through treatment they had to stopped because they had over dosed me with radiation neck was black and blistered. Finally finished the treatment and was given a all clear. Until two month later they did cat scan and found the second primary squamous cell carcinoma
at the base of my tongue.A ten hour surgery, to remove half of my tongue and attach my pectoral muscle, by breaking my jaw and pull that muscle and wrapping around my collar bone and attaching it to my tongue then tied it down to help with healing. . They also did a resection of my neck muscle. Have to say when I woke up and saw my self for the first time I was a basket case. I stayed in the hospital for three weeks and then when home to recover. I do remember a nurse coming to visit me at home and I had a question for her that really blow me away. I wanted to know if there were any statistics on survivors with type of cancer. She bowed her head and said no. I said what yes there is one me!
I never received support from any organization no therapy for my speech or my difficulty in swollen, I guess that is what they did back in the day.
So after 34 years, still working through the side effects of being a miracle and feeling blessed. Is there anyone else that had this adventure in life?

Kathleen A.

Welcome to OCF, Kathleen! Im sorry to read about what you went thru. Back then in 1982, there was no info or support about oral cancer. The Oral Cancer Foundation was created to fill that gap by Brian and Ingrid Hill. Brian has been working nonstop for 18 years to bring this info to the public. Im sure you will find many things on this forum and on the main OCF pages very interesting. Welcome to our family of survivors and caregivers

Kathleen -

Welcome. No you are not alone with your cancer struggles.

My story is somewhat similar to yours. Radical neck dissection, chemo, hemi-glossectomy, two rounds of radiation 17 years apart, 5 different surgeries on my neck and tongue. Now dealing with limited jaw mobility and using a pump for nutrition.

I can tell you that between my first diagnosis to the recurrence several advances were made in surgical technics and radiation treatments. So, extrapolating the 34 years mentioned in your message, the changes would be almost impossible to describe.

I do think that the advances and options available to newly diagnosed patients are based on lessons learned from early successes such as yourself.

So, again WELCOME!


Enjoy each day for what it is and can offer.

wow- i wish my mom had used your hospital! In 1983, my mom, at the age of 33, was diagnosed with tongue cancer.

They radiated the heck out of her and gave her chemo. But they didn't know how to really treat it. They didn't take lymph nodes out, etc. Unfortunately about a year later she passed away as the cancer metastasized. But it breaks my heart because she suffered A LOT and received no therapies, etc. i was a preteen when this happened and it still, to this day, makes me cry when i think of what oral cancer did to her and how much she suffered.

All i can say is that you are a true survivor because what they did back then was way more brutal. In fact, as a tongue cancer survivor myself, i almost feel guilty when i complain or feel down because i know i had it better than she did.

Welcome to the board and thank you for sharing your story.

This question is for Christina. Of my many visits to the Emergency Room through out my life with being a cancer survivor, not being able to speak clearly and being judge a drug addict because I am very thin. Especially if I go in alone. It become a living hell for me. Even if they have my medical records but sometimes it will take them a long time to find it and read it. Do you have any sugguestion for me because I do live alone and I have no one to go with me to the Emergency Room. Are there things I can do to ensure my safety net? Thank you for reading this. Kathleen

Kathleen, perhaps you can create a one-page medical history report and take it with you. If you have a cell phone, perhaps store this information on there. You really beat the odds and you are a fighter! Congrats!