Hi everyone...

My name is Tim and I was diagnosed with SCC (base of tongue) about 3 weeks ago. It's been quite an emotional few weeks and I'm just starting to settle in with everything that's going on. I'm an active (cycling 150-175 miles/week), non-smoker and have been on a mostly vegetarian diet for the past 3 years. I've accepted the fact that anyone can get cancer for a multitude of reasons or, for no reason at all.

On the first of May, I noticed, almost overnight, that a lump has developed on the left side of my neck. It was about as big as half of a golf ball. I went to my family doctor and she scheduled me for a CT scan and got me an appointment with an ENT doctor. The scan came back showing that I had fluid in the lump; therefore, my ENT doc decided to aspirate the lump and send the fluid to pathology. The results came back negative for the fluid, but the lump filled again the very next day. The ENT doc decided to remove the cyst. His initial diagnosis was that it was a brachial cleft cyst and there was nothing to really worry about - especially since the fluid was "clean."

In early July, he removed the cyst and a lymph node that was "in the way." He sent both specimens to pathology and the results were cancer in both samples.

I had a PET-CT scan, had my left tonsil removed and some biopsies were taken from my tongue. Wow, that whole procedure was far painful than I ever would have imagined. I feel like I have a fairly high pain threshold but I needed Percocet for nine days after!

I've decided to participate in a clinical trial that combines Avastin (bevacizumab) and Docetaxel (taxotere) along with the standard radiation therapy (5x/week for 7 weeks). I will have a PEG tube installed before treatment because of surgery issues with Avastin (would have to stop treatment and wait 28 days before installing a PEG tube). The feeding tube was a big issue for me, but thanks to what I've read here, I feel much better about it.

I look forward to learning as much as possible and trying to help others as I start my treatment.

Regards,
Tim

Hi Tim,

Welcome to the OCF forums. You have definitely come to a place here that will be a big help in many ways...mental or physical, someone has something to offer. You will gain a lot by simply reading but if you have questions, someone is always here to offer a viewpoint.

Re: the PEG. Yes, it is a shocking and seemingly foreign concept and it takes time to get used to the idea. Further along in this journey of yours, you will see it as not a huge deal and in my Bill's case, it was a welcome partner in his treatment and recovery.

This timeframe (diagnosed but waiting) is probably the hardest..all the tests, the questions, the unknowns. Once you have started treatement, you will feel like you are doing something to kill the cancer and it won't be as frustrating.

You might consider filling out your Signature Area (see mine??) to give a little synopsis of your situation and keep it updated as you go...then you don't have to retype all the particulars each time you post...helps us answer you better.

Good luck with all of this..we know where you are.

Deb

Tim,

We are very much alike except you find more time to ride than I can afford and if I were you I would get my slides tested for HPV. Won't change your TX (I doubt now) but might help to explain the why.

I noticed my left neck slightly larger than my right and waited the mandatory male 3 week waiting period before mentioning it to my wife and in 2 months I went from King of the Road to Stage IV SCC.

When do you start your Tx?

David,

They're supposed to test for HPV this week. Dr. said it wouldn't affect treatment at all but will most likely mean that I will respond better.

Things are supposed to get started 8/25 if all goes as planned.

I'd like to get started ASAP; however, I'm also afraid to get started because I feel fine...very strange to me.



Thanks,
Tim

Yeah, been there. I was riding at my summer's peak when I was told, Oh you have Stage IV cancer and have a 60% chance of surviving 5 years!! I fainted, how dare he say that to me. I've never been sick a day in my life. I eat the right things; I exercise; I don't do drugs or anything else "they" tell me not to and you're telling ME I got something that has a good chance of ending my life before I retire!!!

One thing you need to do right now is stop riding and eat all the fattening things you can. Try to put on some much needed weight. I couldn't afford to loose a pound and I still lost 30% of my body weight. I wasn't worried so much about the cancer as I was dying from the Tx.

Good Luck Tim! When I see a post from someone like you I feel so guilty. I was dx stage one, no nodes, no chemo or Rad - and why would I deserve that? I started smoking in the 8th grade but did quit 13 years ago. I've been a casual/social drinker and drug user (in my youth - gotta love the 80's) Love red meat and have been obese most of my life. It just goes to prove that old addage that the cancer does not care! Again good luck to you - I'll try to use your good health as an inspiration for getting mine together. Tina

Tim,

Good luck with your treatment. We are all pulling for you. I think you and David should plan for a bike race somewhere between Florida and PA. I'll hold the flag.

Tina,

Having had the same treatment as you, I know where you are coming from with the guilt. You'll get over it, as you will see that everyone here is thrilled for anyone that is lucky enough to benefit from early detection. Just be diligent with your follow-up care and stick around here with moral support and advice.

Jerry

Better yest we should plan a cross country trip to raise awareness and get donations for this site.

David,
This is a great idea. Can you spare that much time? What about your clients and your side job as care giver to your local friends?
If you guys want to go cross country, fine, but what about those of us who are less athletic?
Perhaps we could have a national OCF "ride-around" week and even kids on trikes could participate. Everyone could have a flag to put on their bikes and groups or families could make up their own routes.

Out of tiny seeds grow tall trees so lets keep thinking and maybe we can get something going on on the national even world stage. I like the local bike idea. I know I could get one organized here.