Hi, I am Roger Adams. I have been diagnosed with stage 2 cancer in the lower part of my mouth, left hand side very back. Anyone with the same cancer?

Roger,
Welcome. Although I have only been on this board a very short time, I have found it extremely beneficial. It sounds like you have only received this diagnosis very recently? I am a caregiver to a oral cancer patient, but just wanted you to know someone was out there. Even though their cancer can be located in different places or at different stages, most of the board members (or their family members) have been diagnosed with Squamous Cell Carcinoma (SCC here). The location of the tumor may affect treatment options, but most likely it will be a combination or variation of surgery, chemo and radiation. Don't panic! There is tons of helpful advice to be found here as well as emotional support. Everything moves so fast at the beginning, but that just means you are that much closer to recovery. My prayers are with you.

Jamie

Roger,

Welcome. I'm fairly new to this board as well. I have found it to be a great source of information and support. My cancer is on the base (back) of my tongue left side. I have finished radiation and chemo and am just now starting the road to recovery. Have you discussed any treatment options with your Drs yet?

I only had one option for treatment, that was to remove the cancer and lower jawbone and 6 weeks of radiation. I also went to the cancer treatment center of america in Zion,Ill. last week, but have not recieved any feedback so far. It is very hard to get anyone their on the phone for answeres. It has been 4 weeks since the diognoses and I am afraid to keep waiting for anwsers because of how fast this grows. Please give me any feedback that you think will help. Thanks

Hi Roger
Like Tim and Jamie I

Hi Roger,

I have been posting for a while now. You need to take control. If they don't respond, go to your primary Dr. and ask for help. Also, I think yo need a second opinion. Mayo in Minn or Cleveland Clinic are good choices. You need to bgin treatment ASAP. My cancer was not very agressive, but others I have seen grow at frightening rates.

I would push things as hard as you can and I THINK YOU REALLY NEED A SECOND OPINION as far as treeatment is concerned.

Good luck and keep us informed.

Steve

You are not that far from Indiana University, which has a National Cancer Institute-designated cancer center (the entire list of NCI cancer centers is here ). Getting a second opinion from such a center is critical; doctors there will have the latest information on treatments, research and clinical trials.

Here is information about the IU head and neck center. There is contact information on the left side of that page.

Cancer Treatment Centers of America is not on the NCI list.

All the best --
Leslie

Roger,

I completely agree with Steve and Leslie about the need for a second opinion from a major cancer center that is NCI-designated. It sounds like you don't have a doctor that's helping to move the process along, and your best bet is to get to one of these centers to see an experienced head and neck team.

Cathy

One other thing about an NCI-designated center: It will have specialists who see ONLY head and neck cancer cases -- including the doctors responsible for radiation and chemotherapy treatments, as well as the surgeons. These physicians will meet as a "tumor board" and discuss each case to determine which treatment (surgery only? radiation only? radiation plus chemo? surgery plus radiation? etc.) will result in the best possible outcome for each individual -- so patients get the collective wisdom of several different approaches to the same type of cancer.

According to the information on the Cancer Treatment Centers of America website, none of the staff members at any of the CTCA facilities is a head and neck cancer specialist. This disease can be tricky -- you need an experienced head and neck team, which will also include reconstructive surgeons, dentists and nutritionists.

You appear to be only a hour or so away from the IU cancer center in Indianapolis. (That's how long my husband travels to see his doctor at Johns Hopkins.) That center's website, linked in my post above, indicates that you can call them yourself for an appointment.

Since you've shown a willingness to travel by going to the CTCA near Chicago, you could also check out Northwestern's Lurie Comprehensive Cancer Center or the University of Chicago Cancer Research Center (both in Chicago), or the Ohio State University Comprehensive Cancer Center in Columbus. Going farther afield, many people on these boards have been treated or given a second opinion at M.D. Anderson in Houston, which vies with Sloan-Kettering in NYC as the top cancer hospital in the U.S. All of these are on the list of NCI-designated cancer centers linked above.

You need to become your own strongest advocate, so get on the phone and call one of these centers. They can move quickly, especially when cancer has already been diagnosed and you are seeking a second opinion, so you should not have to wait too long for an appointment. Be sure to ask them what lab and doctors' reports, slides, etc. you should send to them or bring with you.

If you're in a relationship, get your partner on this website as well. Caregivers have their own set of questions, and many people here have the answers.

You'll find a lot of good information on these message boards and in the main part of the site. Keep coming back.

All the best --

Leslie

While everyone likes to send people outside the OCF site...this information resides on our other resources page, and this link off of it. http://www.oralcancerfoundation.org/resources/cancer_centers.htm

We did anticipate many of the questions that would come up, and build a site that incorporated those answers.

Roger,

I have experience with both Northwestern's and the University of Chicago's cancer centers. I have been happy with the doctors at both institutions and would be happy to talk with you about them, just drop me an email. The other hospitals mentioned (Anderson, Sloan) are considered the best, so if you're able to travel I would consider contacting them as well. Either way, please act now.

Take care,
Dave

Thank you all for your support, I am in limbo now waiting for the results from Cancer Treatment Center. I am thinking of going to UI. cancer center at Indianapolise, In. for a third opinion. It seems to be a slow growing tumer so I may have a little time to check around and make sure I get the best and right treatment. Anyone have any comments on this?

Roger --

It sounds as if you were first seen by a local doctor who has recommended what sounds like fairly serious surgery and radiation. You then went to Cancer Treatment Centers of America in Illinois, which has NO head and neck specialists on its staff, based on the information provided on its website. (None of the other CTCA facilities have head and neck specialists either, according to the website info.)

This area of the body is involved in many diverse functions -- eating, talking and breathing, for starters. You need to be evaluated by a TEAM of doctors who deal ONLY with this disease. Call the IU cancer center -- the sooner, the better.

All the best --

Leslie

I went to IU head&neck for 3rd opinion. I got ro see a cancer sergion, and he said I was in stage1 not 2 as had been told. He also said he thought he coud do surgery, get it all without removeing the jaw bone and that there was an 80% chance I would need no Radiation. I signed on for this and the surgury will be schedualed within the next two weeks. I am also expecting a miracle and no surgury as God promised me in his word. Thank you all for your support and help. I wish I had known about IU in the first place. God Bless you All.

Roger --

Getting to a place that deals only with head and neck cancer can make all the difference in treatment. Best of luck with your surgery.

As your surgery gets closer, and afterwards, keep bringing any questions you have back here -- there are plenty of folks who have finished what you're about to start, and they're glad to be of assistance.

All the best --

Leslie

After surgery is there anything we should get to be prepared for recovery at home?