In March of 2014, I went to Baylor Sammons Hospital in Dallas, TX with a diagnosed tumor at the right side base of the tongue. I had a biopsy and it was diagnosed as squamous cell carcinoma. It seemed like I had what many people were getting and that the treatment would be very straightforward-35 radiation treatments and 7 weeks of chemotherapy. I was told by the oncologist that this would definitely be cured with the treatment. I did get second opinions on the treatment options, BUT NEVER GOT A SECOND OPINION ON THE PATHOLOGY. It was never recommended by the doctors at Baylor to get a second opinion on that. It turned out to be Mucoepidermoid carcinoma and the tumor was not gone. I went to MD Anderson Cancer Center in Houston and a 13 hour surgery was done to remove half of my tongue and replace it with a flap from my arm. This was done on November 9th of 2014 and it seemed like it was a good job. I had a CT scan a week ago and the preliminary reading was good. However, the radiologist read it and found two lymph nodes on that the doctors now want to ultrasound and needle biopsy. Those nodes are on the left side of the neck. I have that biopsy scheduled for next Tuesday and am very anxious. I have tried to move the biopsy date to an earlier time, but they are extremely booked. Has anybody had this type of situation or one similar to it? This is my first post to the forum. I thank anybody for the help they could give.

Welcome to OCF! Im sorry to read about what you have already gone thru. Luckily you have now found our site. We will help you with info and support.

You are now being treated at one of the best comprehensive cancer centers (CCC) in the US. Waiting is the worst!!! Ive been in your shoes and its very difficult to focus on anything besides "what if...". Anxiety is not good for anyone, so do your very best to keep busy. By doing things that take lots of concentration it will help you to stay calm.

Tuesday is right around the corner. It will be about another week after the biopsy until you get the results. More waiting, UGH!!! We have a saying around here... " its not cancer until the biopsy says it is". Repeat this to yourself over and over until you believe it. Ive had many scares that turned out to be nothing. Hopefully this will be nothing serious and you can go on with your recovery and life.

Hang in there!!!

Hello JPT. I can relate to your story. First of all the waiting. It is very hard and all you can do is try to do things that you enjoy and that will take your mind off the possibilities.

I had two lymph nodes light up on a scan before last year's surgery. No cancer was present. I also know what you mean about second opinions on pathology results. Not for oral cancer but the ovarian cancer I had 20 years ago, it was only a retesting of the tissue that resulted in an accurate diagnosis. The second opinion doctor asked "his" pathologist to look at it again. This was my good luck. I don't think it is standard practice.

Waiting for test results ...hmmm. It's crazy but I've found that treating myself works. Shopping even. Really nice food. Learning something new. Writing down your feelings. If you have to wait a while after the biopsy, you might have time to see a counsellor.

Best wishes.

The nodes could simply be an infection or healing although cancer can cross the midline. Id tell them to go in and remove the nodes. I know a needle biopsy is a quick way of determining cancer but to me I'd say just remove them - I'm assuming the nodes on the other side have been removed. Hugs - I know it's terrifying. Ideally tongue cancer (oral tongue) is treated with surgery first this is why a ccc is always the best choice right out of the gate, but if you don't know to ask then you have to trust your dr. Knows what he's talking about.

Thank you to Christine B, Alpaca and Cheryld. Your words are very helpful as I go through this incredibly hard journey. One of the most frustrating things for me is that I am still on the feeding tube. I have made a lot of progress regarding swallowing. I went to the swallowing "boot camp" and now see a swallowing specialist three times a week. At first, I couldn't even swallow water and had to carry a spit cup wherever I went. I now primarily have problems if I can't get the type of food that I can swallow. I sure do miss those barbecued ribs that I used to have. I can eat things like bananas and yogurt and I am still working to broaden the type of foods that I can eat. I may get the esophageal stretch and am going to look into an appliance that my dentist recommended the other day. The other part of the issue with eating is that it is such a social event and I am working hard to keep connected even though I have to make special arrangements for my nutrition. I have gotten some information from the Oley Foundation and they have some very inspiring stories there.
You are right-it is very important that I keep myself as busy as possible so I avoid the depression that can come on when I am not busy. Thanks again and I will keep in touch.

Its always nice having another survivor join our group. We understand exactly where you are coming from. Being on a feeding tube is horrible, but it is a necessary tool for many patients. Im on one for life, myself. Its hard watching TV with all the delicious foods being advertised. Seems like everywhere you go, there is food and people making plans to go here or there to eat. Ive adapted to it but its not an easy situation at all.

The Oley Foundation can be very helpful. They have a great patient/donor exchange program. Ive used it both sending to others and receiving things myself. Im glad you have found them.

You still are in the recovery phase so you have a long way to go. Sounds to me like you have made quite alot of progress. Im sure you are doing much better than when you first finished rads. Keep pushing yourself on what is within your control... your intake. You will learn quickly I am a nag about this topic! Every single day until you hit the 2 year point, take in at least 2500 calories and 48-64 oz of water. Ask your doc about adding some high protein whey powder to your diet to help with your heeling. I would wait until after the test result come back and you are all clear before making any dietary changes, except to strive for hitting the previously mentioned numbers. Ive found that by having something to focus on and to work on helps to keep your mind busy. It works for me, maybe it will help you too.

Hang in there

JPT, you are right about the social side of eating and the need to stay connected. I struggle with it because my natural tendency is to be a bit shy so it's easy for me to say "I can't go to that because I can't eat without making a mess". Don't be like me! Christine gave some good advice a while back: cheesecake is easy to eat. If I go out to a cafe, I can sometimes have that. It's just the right consistency. Pity it is so sweet. If I'm out all day I'll sometimes have a McDonald's lime milkshake to keep hunger at bay until I get home. I am sooo sick of smoothies and they're very expensive at cafes. Favourite food at the mo is mashed mixed vegetables (yams, sweet potato, broccoli, cauliflower) with brown onion gravy and some cooked mushrooms with sour cream. But I have to have that at home!

Thanks again for the good advice and encouragement.

I will keep in touch since I think I have found a really good forum.

The feeding tube is hard I was blessed and not blessed in that I had one but couldn't use it so I was forced to consume all my nutrition by mouth. At the time it sucked but I had the tube removed 2 weeks after treatment completed because I had no use for it. I made protein shakes, loved puddings (rice) yogurt, soft foods... Scrambled eggs, mashed potatoes, soups, and drank a crap load of water to wash it down. I'm a vegetarian and don't do a lot of dairy so I would use almond or cashew milk as well the thicker it is - the more slippery it is - the easier it is to help slide the food down your throat! Good luck... Let us know about those nodes...