...I'm back just the same as my cancer was. I just finished another marathon of surgeries to remove a recurrence of Squamous Cell Carcinoma of the Tongue. At first diagnosis it was on the left edge of my tongue. I had a little grayish pinkish spot there for 10 years! I had it biopsied every year or so and it always came back as dysplasia (abnormal cells but not cancerous). I wanted to have it removed but my insurance would never pay for it. In December 2009 it began to grow and ulcerate. I had it biopsied yet again...no cancer. It kept growing and growing and was extremely painful. I had it biopsied that Spring 3 times and again...no cancer. The biopsies were done at the local county hospital. The Pathologist was well respected.

I finally took myself to Sylvester Comprehensive Cancer Center in Miami in June 2009 where upon looking at it the surgeon scheduled me for a hemiglossectomy on the spot (no pun intended)and told me he was sure it was Stage 4 Squamous Cell Carcinoma. (It turned out to be T3N0.) I was in shock. By this time it was an angry open ulcer that measured 5cm. How could this be? I had it biopsied at least 14 times over a period of 10 years? I obeyed all the rules of early detection.

The point of my experience with this disease is that not everything is so cut and dried. If you have a spot that won't go away don't take the initial biopsy as proof that it isn't cancer or going to become cancer. If I had only known that I would end up with a pectoral flap for a tongue I would have insisted that the spot be removed years ago insurance or not.

This year, a year later almost to the day I was diagnosed, the cancer was detected again through a deep biopsy of what was left of my tongue. I had two 24+ hour surgeries within 4 days because the free flap from the second surgery became infected while at the hospital with MRSA. I ended up with a pectoral flap that replaces my oral tongue. Hopefully by the Spring of 2011 when the swelling is finally gone I can have cosmetic surgery to make my neck look more normal and if i can afford it maybe a pectoral implant and tooth implants to replace all my lower teeth that were removed in the second surgery.

The up side of all this is that they couldn't find any cancer cells in the tissue that was removed this year. Maybe it is finally gone.

Wow Tim. What a story, and an eye opener. I guess we all have to be on our toes when anything shows up, and maybe get more than one opinion, and sometimes two. You've been through a lot and I hope your cancer is finally gone. Thanks for the input, and stay on the Forum because your information is very helpful.
julieann

Thank you for posting your story Tim.
As Julieann says you have been through a lot especially this last year.
Hope it has gone and that you are cancer free forever.
Gabriele

Thanks for posting Tim. My sister also had a negitive biopsy in January. Her sore kept getting bigger and bigger. She went to another ENT in April and guess what SCC of tongue on 2nd biopsy. By the time surgery came her tumor was 4cm. 3/4 of her tongue removed with a flap from her wrist. Weird how the biopsies cameback false. Hope you are recovering well..

Hi Tim. You have had one long road. Hope you are doing well now and that you will not have to undergo any more surgeries for this. Best of luck with your recovery.

Hi Tim,
My intial dx was pre cancerous dysplasia too but it was removed the next week and pathology tests then found it actually was carcinoma- it either changed that quickly or was always cancer but biopsy didnt pick it up.
I wish you a speedy recovery

sorry it came back, but glad you are fighting this beast hard!!

hopefully now it will be done, and you can recover and heal as quickly and smoothly as possible!!

Hi Tim, Thanks for sharing your story with us. It just proves how on top of this disease we have to stay. We don't have the luxury of becomming complacent. Welcome!

Tim

So sorry you had to be dealt the hard hand of recurrence. What a story and how terrible that you pressed the doctors for ten years and this still happened. Hope it goes better in the future.
Charm