Not sure doing this right...we will see.

I was diagnosed with cancer on July 1, 2004, through a biopsy from a swollen lymph node on the left side of my neck. My local ENT suspected my tonsils as the source and scheduled me for a tonsilectomy with biopsies of any suspicious areas.

The biopsy showed the source as my tongue. I then sent to the neck and head department at the University of Alabama at Birmingham.

I have since been advised I am Stage IV, lymph node approximately 5cm and left side of very back of tonque about 3cm.

The head and neck surgeon at UAB advised two courses of action. Lateral tonque section and neck surgery for tumor followed by radiation or radiation/chemo followed just neck surgery (hopefully). He recommended the radiation/chemo followed by neck surgery.

Yesterday I met with a recommended radiation oncologist about 60 miles from home. I wanted to meet with one closer than UAB to see determine if I could get good local radiation/chemo treatment. Doctor was outstanding and I believe that I can.

Today I met with the UAB radiologist oncologist and medical oncologist. I was offered participation in a clinical study or conventional treatment.

The clinical study involves 3 full doses of chemo over a three week period followed by radiation/chemo with twice daily radiation the last two weeks of radiation therapy. This is just a clinical to continue to try and find better treatments for certain cancers.

The second choice conventional radiation/chemo.


Concerns:

If I elect radiation/chemo at UAB I will have to stay there as we do not live there.

How do you ever decide if you want to participate in a clinical trial?

Do the benefits of going through radiation/chemo locally outweigh any benefits that may be derived from being at a larger cancer center?

Anyway...thats my story up til now.

My wife and I are at the picking radiolgist/oncologist stage.

Bill

My husband had his radical neck surgery at UAB. We were able to have the chemo/radiation at a Cancer Center not far from home.

I can't help with the decision of clinical trial vs. conventional treatment. I can tell you that UAB is a first class hospital and I believe you can get free housing should you decide to have your treatments in B'ham.

Hi Bill

Sorry to hear that you have to go through this battle, but glad you found this site and board, we'll all try and be as much help as we can. We're very supportive of one another here.

I'll try and answer your questions best I can.

I guess what you are dealing with are 2 issues, first the surgery, second the rad/chemo.

Obviously for boht the surgery and follow up rad/chemo you want the best you can find that's practical. To do the rad/chemo at UAB you would have to stay there during the week as the rad is daily usually Monday to Friday. You might want to look at serviced apartments instead of hotel, I had to stay in another city for my treatments, first time I did hotel, second time I did serviced apartment, the second choice was the way to go and not any more expensive than the first.

So, that having been said, the best idea is to get the surgery at the best place you can, with the best surgeon you can find. If UAB is that place, then that sounds the best course to me.

As far as the rad/chemo, what you want is a place that has a good cancer treatment center obviously, but also can do the type of radiation that is needed. One question, would the local place be willing to work with the folks at UAB on a treatment plan? That would be the best scenario obviously. Does the local place have the equipment needed for your particular case? Do they have expereince in treating your type of cancer? You probably asked this already, but I would see if the UAB oncologist and the one from the local place can work together. A lot of people advocate the big center approach, especially a place that has a tumor board, a group of multi-disciplinary doctors who look at your case and all decide on the best course of treatment.

I do have one question though, from your description, it sounds like they want to do surgery on the tongue, followed by rad/chemo, followed by a second surgery on your neck.

Is there a specific reason for this? I am thinking that 5cm is pretty big size, and I can understand if they want to see if they can shrink the tumor on your neck first, but surgery on areas that are previously irradiated is tougher to do for the surgeon as the tissues tend to have a different texture from what I understand. Just a question, and I may have answered it myself already.

Welcome to our little community, or as we call it the "club no one wants to join." Keep us informed and always feel free to ask any question.

Bob

Hi Bill & welcome! I am truly sorry you have to be here, but these boards are full of warm loving people & much information. Your situation sounds exactly like mine, diagnosed 2/9/04. I AM NOT A DOCTOR, but the feeling I get around here is that the full meal deal is the way to go in terms of reducing your chances of recurrance & as soon as possible! Again, I AM NOT A DOCTOR, but has anyone suggested neck disection at the time of tongue resection, one bigger surgery & one recovery instead of two surgeries & two recoveries? That was my treatment and I can't imagine in retrospect going through two separate surgeries with chemo/rad in between. It just seems like a more efficient way of approaching the situation. I'm a realist so I won't beat around the bush. All the pain meds create their own set of problems, terrible constipation, etc. The sooner I was off the opiates the better for me. I wasn't involved with clinical trials but did commute to Virginia Mason Medical Center in Seattle every week day for 7 weeks for chemo/rad treatments, about 60 miles from my home. The commute was tiring & the last week and a half I did have someone drive me back & forth. I was just too sick. Being at home is good. Is UAB a comprehensive cancer center? If so you'll have many opinions from a team of doc's & insure your best treatment. Believe me, you only want to do this once and get the job done the best you can. Also, are either of these facilities using IMRT radiation? The radiation beams can be more focused and maybe spare permanent damage to spit glands & other critical structures. Educate yourself as much and as fast as you can. You have a lot ahead of you real soon. Be strong and keep yer chin up!

Welcome Bill,
My husband, Dan, had tongue surgery end of last July; recurrance (neck tumor), rad. neck dissection followed by chemo/rad. He is now doing well and we are moving to Birmingham, Alabama in two weeks for his job transfer. I wanted you to know this for two reasons:
1) When we talked our move over with Dan's ocologist at the University of MD Medical Center, he immediately gave us names of people he knew at UAB and talked very highly of this center (it is a comprehensive cancer center!), and
2) If you end up being at UAB for treatments, maybe we can get together and we can talk about his treatments over the last months to give you some insight and help.

Take care and God bless,
Debbie

Bob, Erik, Debbie,

Thanks for the reply.

Sorry for any confusion on my initial treatment. UAB Head Neck Surgeon is recommending radiation/chemo followed by neck surgery as required. The hope is that the tongue cancer goes away as the result of the radiation/chemo.

Other comments:

UAB will remain my surgeon and central point.

The radiation/oncologist that would treat me in Panama City is well known in Alabama and comes highly recommended by UAB and everyone else we have talked to. Apparently, they exchange patients all the time.

I have the same comment...and will be checking today. Can the Panama City radiation and medical oncologist team consult with the UAB radiation and medical oncolgist team to ensure radation/chemo protocols are consistent.

I asked if UAB team would be using IMRT and they said no. I did not ask why. Panama City does not have IMRT which is why I asked the question.

UAB team said chemo would cisplaton and taxol.

All your comments help me think of other questions.

Thanks,

Bill

Hi Bill,

First I want you to know I am really sorry you are having to go through this. I am glad you have found this site as it is full of useful information and great support to help you through this.

I had a tumor slightly smaller than yours on the tongue with two lymph nodes showing metastatic cancer and my largest was about 3 cm. My diagnosis was done mostly from a PET/CT scan and an MRI as I was allergic to the CT contrast dye.

There are different views on the neck dissection for stage IV cancer, especially over the last five years. Even with the National Comprehensive Cancer Network comprehensive cancer centers some will do the neck dissection and some don't unless there is still cancer left after the radiation/chemo therapy or for a recurrence. If the radiation/chemo is done first, it may require less of the tongue removed because of the tumor shrinking or being totally eradicated. In my case, I had radiation/chemo and the tumor was completely destroyed. Statistically, doing the neck dissection has not significantly increased the five year survival rate.

Here is a link to the NCCN guidelines for you to review:
http://www.nccn.org/professionals/physician_gls/default.asp

I did not go to an NCCN member center but I did go to a comprehensive cancer center for treatment. I had my otolaryngologist consult with MD Anderson, an NCCN member center, and the treatment was exactly the same. Many if not all of the NCCN centers have a process that gives you an expedited second opinion with just the doctors reviewing scans, path reports, etc.

I hope this gives you a bit more info to help you make your decision. Of course, if there are any other questions, feel free to post them or email/private message anyone on the board. We have all traveled a similar road in many ways and are more than willing to help you through this...every stage of the way. It is not an easy road but here you will find it is a well-traveled road.

I have an Uncle, Aunt and two cousins living your way. We used to fish off of the Destin bridge long before SanDestin was ever a part of the horizon. My girlfriend in Junior High School was transfered to Eglin (her father was the base commander). I used to have many photos of the B-25 in Niceville but I don't know where they have gone to.

Welcome again.

Ed

Ed,

Thanks for the posting. I checked that web site and UAB is both a comprehensive cancer center and NCCN member.

Also, talked to Dr. in Panama City and said he and medical oncolgist in PC, would be glad to consult with doctors who reviewed my case at UAB and coordinate my radiation/chemo protocol.

He said glad to do whatever we feel is in my best interest.

I flew F-4s and F-16s for 23 years in the AF before retiring in 1994...now a CPA if you can believe that.

You would not believe the traffic and growth here if you have not been here in awhile.

Bill

Hi Bill. I see that you've gotten some pretty good, comprehensive answers to your questions. From your description, our symptoms were almost identical. I was diagnosed as a result of a swollen lymph node -- the right side in my case. I ended up with a 6cm lymph node tumor and 2cm tumor at the base of my tongue. I wanted to add my story to this thread because I was not offered surgery as part of my initial treatment plan. I took my treatment at M. D. Anderson in Houston. My tag line contains a summary of my treatment. The docs felt there was no advantage to surgery in my case and wanted to preserve organ function and limit disfigurement as much as possible.

In any case, welcome to the forum. Having this stuff is no picnic, but you'll get through it ok.

BTW, I was once a maintenance analyst in a Navy F-14 squadron. I got to ride in one once and joined the Chuck Yeager club. Amazing! Once again, welcome aboard.

-Brett