Greetings,

I am so glad I found this site. A few weeks ago I had a lump appear on the left side of my neck. I went to an ENT doc and after a needle biopsy and a cat scan he thought it was just a cyst and scheduled me for surgery on 12/31/05. Once he cut me open he discovered my enlarged lymph node was full of cancer.He then removed my left tonsil and took a biopsy from the back of my tongue. The biopsy from my tongue was clear but they discovered that my tonsil was the primary source of the cancer.

After the initial shock, I've been trying to learn as much as I can about this disease. I have my first meeting with an Oncologist at Hulston Cancer Center in Springfield, MO on 1/13/06. I'm in the process of making a list of questions to ask him. I would appreciate if anyone can suggest what info I need to get from him. I would also like to hear from anyone that has been treated at this center.

I am also having my medical records sent to MD Anderson to review. They said after they review my file they would contact me. Hopefully, if they will accept me, I'll go there to be treated. Only problem is my insurance will only cover 50% of the treatment due to it being an out of network facility.

I want to be proactive and beat this thing. Any comments or suggestions will be appreciated. I look forward to becoming an active member.

Thanks,
Lee

Lee,

I'm sorry you're having to deal with this, but it sounds as though you're on the right track in terms of getting to a major cancer center and also exploring second opinions. Being proactive and aggressive about tackling this disease is a really good idea -- too often it has a second chance to come back because it wasn't hit hard enough on the first go-around.

At a cancer center, you should be getting the input of various doctors within different branches of oncology who can give you their reasons for any future treatment recommendations. If you find yourself facing radiation as a followup to your surgery, you can find plenty of support here from people who have been through it (both with and without chemo). Radiation can be tough on the system -- the effects can sneak up on you and suddenly leave you with eating and swallowing problems, making nutrition very difficult, but there should be resources at your hospital (and there certainly are here as well), to help you if it comes to that.

Also, if you are in need of any dental work and are likely to have radiation, it's best to try to deal with the dental work first. (Although if any doctors try to convince you to have a lot of teeth pulled as a preventive measure before radiation, definitely get another opinion.)

Feel free to come back as often as you have questions or want to update us on how you're doing.

Cathy

Lee, Welcome. Sorry to have you among us. If your insurance won't help you at MDAnderson, check on the University of Chicago Medical Center. Both centers are top notch and will give you good counsel. And, there are other centers too.

Different treatment centers have differing philosophies (approaches) about head/neck cancer. No one has proved one approach superior to another - except that the drugs are getting better, the radiation more specific and the surgeries more effective. It truly pays big dividends to be among medicos who are up to speed. No matter where you go, ask lots of questions, take notes (I carried a tape recorder to every visit) and be really invoved. You'll get better care no matter where you are treated.

And, you do not always have to travel to get the best care. Your treatment plan can be prepared in one place and delivered in another. The cancer center near you may be able to provide for all your needs. My tx plan was written in Chicago and I got treated in northern Colorado. A couple of plane rides was all it took. Distant treatment isn't necessarily better treatment.

Make your docs tell you about all the other treatment options - no matter where you wind up. Be convinced that your docs have both experience with and good reasons for their choices of care. Remember that cancer treatment is a business - and you are the customer. Don't buy the first thing they 'show' you. Be hard to please. Make them 'prove it' to you on every detail. You'll feel better and they won't mind.

Questions to ask: Who else in the country treats this type of cancer? How do they treat it and why? Do I really need the surgery? (I chose not to have it) Which chemo drugs are you recommending and why? What are the negative effects of each drug? Are there alternative drugs if I can't tolerate this one or that one? I want to get the cancer on the first try here. How does your treatment plan assure me that its enough? Do I need a peg tube? Can I keep my teeth? Do I need a port or a pic line for chemo? Why not the other? I want blood work done every day that I have chemo. I want extra hydration with every treatment. I want drugs to support my white cell count. I want drugs for nausea, pain, constipation, vommiting, sleep and mood. I want a variety of pain meds at my house: minor, medium and 'oh my god'. I'll choose the one I need. I want rinses for my mouth and throat. I want HBO in the chemo room!

We are with you. Be strong. Tom

Perhaps you could ask your medical insco to provide a list of in-network providers. If all those you consult recommend the same course of treatment, and an in-network provider can provide that, then why not?

Pete

Hi, Lee. I lived in Springfield for almost 20 years. Lots of good Drs there. My 1st question to my Ins co would be "What Comprehensive Cancer Center would they cover in full?" after your dedutible.We have fought with John Alden Ins. over lots of payments since John's tx began. I finally appealed to the Ark. State Ins Commission and got them to pay for every disputed claim[it took me 8 months of grit and determination to fight them. I agree that once you have a plan of treatment in place, it is very possible to have it carried out in Spr. or somewhere in Missouri, if that is the "network" you are in. It would be interesting to know who your Insurer is. Someone here might be able to give you some insight in how to deal with them. The bottom line is, don't let the Ins. people control your treatment. Amy

Amy - Very well said. Tom

Lee, welcome to our boards. I am sorry you have to be here, but you are already ahead of the game by being so proactive in your own treatmant.
Take the advice these guys give you , they have all been where you are.
MD Anderson is not the only game in town but, I understand your wanting to go to the facility you believe to be the best.
Even if your cannot be treated there your own Doc can consult with them.
Wishing you all the best.

Marica
You tell `Em Amy!