Hello,
I am new to the forums and have a dear friend I am trying to help navigate the medical world. I have read a lot of information since the diagnosis last Thursday and contacted everyone I know in the Cancer Care and patient catgeory of my address list. In reading these forums it seems everyone here is really informed. Thank you for having such an invaluable resource!

Get her to a CCC

http://www.oralcancerfoundation.org/resources/cancer_centers.htm

Has anyone done a biopsy in the oral cavity yet and confirmed oral SCC? Not sure I totally understand your Signature Line.

My friend had a biopsy - right cervical lymph node removed on 8/6/09. Results on 8/11/09 showed Squamous Cell Carcinoma. A PET Scan was ordered. PET Scan on 8/13/09 shows both tonsils, right tongue, and another node on the other side (left) lit up. There is also a T2 Vertebrae that needs further diagnosis. The ENT said he only sees about 10 people a year that have this disease. The ENT referred us to a Radiation Oncologist and a Medical Oncologist. We got an appointment for the medical oncologist that was recommended by two independent methods for 8/28/09. We are waiting on the Radiation Oncologist appointment date to be set. Tulsa Oklahoma does not have a CCC or any group that specializes in SCC Head and Neck from my research. The current ENT has ordered an MRI of the T2 Vertebrae.

It would probably help to pose my questions:

1. Should we try to find an ENT that treats this disease in more than 10 people a year as a local and long term doctor?
2. Is there a registry of MD Surgeons that specialize in SCC of the tonsils to help us find the best local skilled ENT?
3. Any advice on getting the medical and radiation oncologist to agree on a treatment plan - do we need a surgeon involved to evaluate if surgery should be done.
4. Who stages the disease? And when will it be staged? We asked the ENT but he danced around the answer just saying the staging just went up - after the PET Scan results - and referred us to the raditation and medical oncologists.
5. Do we need to go see a dentist too?
6. I see many have gone to MD Anderson - I would love any input on how that process works - how to get started, who to ask for, when to go, and whatever I don't even know how or what to ask? Do you start treatment right away or have to go back. Radiation seems indicated - does that mean staying in Houston 30-60 days?
7. Any personal information on what to expect to happen next - in particular - what should I do to help - or where else do we need appointments?
8. Anyone have a list of questions we should ask at the radiation and oncology appointments?
9. Any suggestions on reading - I have read everything in the NCI, ACS, and CDC websites that pops up in searches on those site - actually how I found this site...
10. Is IMRT the latest and greatest in radiation technology?
11. Is anyone in a clinical trial?

If you have answers to any of the above please reply. If you have additional questions I should have asked - answer them too. I am a sponge and need to soak this in to be able to help my dear friend. I have been a care taker for 3 people with cancer but never this type and have been overwhelmed with the new terminology. The terms forum here has really helped.

Feel free to PM me if you do not want to discuss/reply in the forum.

Thank you for being here!
Cheryl was taken and my friends call me Brickhead - yep - you can imagine why - and they are right so my nickname here is Brickhead.

No the ENT did not want to operate on her mouth - he just went by the PET scan. Is it possible to do an FNA on the tonsils? The ENT was afraid to do surgery to remove due to bleeding and wait time before radiation would be possible.

David,

The ENT that did the biopsy seems to be done with this case - see my lengthy note I posted after my introduction in this forum. Sorry I did not know how to enter the diagnosis in the tagline. From your question now I am worried that we don't have a real diagnosis. Do we need to ask for a biopsy or FNA to the tonsils before we do anything else?
Thanks,
Cheryl aka Brick

Cheryl:
Welcome to OCF. Your friend is very lucky to have you there for her. I will try to answer some of your questions.

Staging is written out on the main pages of OCF. There is a search field that is very good there and will answer many of yoru questions. A biopsy is the only way to tell if its really cancer. I was a little confused by your posts as to if a biopsy was done.

Second opinions are something most cancer patients should opt for. Some even go for 3rd's, one member got 5. This would be especially important if the current ENT openly admits not much experience with OCF patients.

Remember this...surgeons cut, thats their job. Once something has been cut off then it cant be returned to its exact original functionality.

Do not allow geographic location determine the treatment plan.

On the main pages of OCf there is a list of cancer centers. This can help you to find a place for treatment. Another source for doctors is the insurance company. Most have websites that can give you a list of doctors and specialists.

Clinical trials are something a few members have been a part of.

As far as reading and becoming educated about OC, take some time to read the draft copy located under the last heading Getting Thru it Project. This is very valuable info coming directly from patients and their caregivers. It will also help in your list of questions to ask doctors.

You have already asked an important question. How many OC patients have you treated is a great start.

A dentist is necessary. Trays for floride need to be made and maybe even some teeth removed prior to starting treatments.

Most doctor appointments are first the consultation. Then a plan is devised, carried out and then check ups.

Your friend could end up with a large list of doctors. Sometimes its tricky figuring out which one to call for what. Just think as to what each doctor specializes in that will help when you dont know who to call. Ive had a medical oncologist, radiation oncologist, nutritionist, ENT, oral surgeon, dentist, prostiodontist (dentist who specializes is cancer/trauma patients), gastrio surgeon, speech therapist, physical therapist and hyperbaric oxygen wound specialist doc.

Starting out is a scary time and its filled with many appontments and consults. Make sure your friend doesnt go alone, take notes, ask questions. Dont let cancer steal time away from you both with worrying, it will not change one thing. Make the best of everyday and find joy in things that make your friend happy. Start encouraging your friend to eat like crazy and the heck with the calories. Its ok to gain weight, just make sure that they have no regrets when their sense of taste isnt working like it should.

Best of luck to you and your friend.

Cheryl --

You asked about how to get started at M.D. Anderson -- here's a page with all that information.

A friend who does not live in Houston was treated for breast cancer at M.D. Anderson -- she had her chemo (prescribed by MDA physicians) in her hometown and returned to Houston for surgery. Don't know if similar arrangements can be made for radiation treatments, but you can ask -- perhaps MDA has affiliations with local doctors across the country. Those here who were treated there would know better.

I wish your friend (and you) all the best. And yes, your friend should be seen at a facility where a team approach is the norm and head/neck cancer is routine, not the exception.

Absolutely...we saw the Head and Neck Group at Moffitt (CCC in Tampa, FL) and they gave their blessings for radiation and chemo here in our home town (they were familiar with the doctors.) We continue to go to Moffitt for quarterly checkups. You do need a team approach to the diagnosis and treatment plan that is possible at a CCC. Then, make a decision on where to get that treatment. Many CCC's have residential facilities on their campus run by the American Cancer Society and at no charge to patients undergoing treatments. Check that out...no net worth check...free to all.

Deb

Christine,

Thank you so much for taking the time to write the reply in such detail. I will read the items you have referenced. I am sorry I was not clear in my description of the situation. I am a little overwhelmed with the terminology and will try to learn more.

I am confused now about the diagnosis we got from the ENT. Maybe this cronology will clear the confusion:
1. Had a sore throat and cold earlier this year.
2. A lymph node on the right side of the neck (cervical node) swelled up and did not go down but got larger.
3. Primary care recommended hot compress and decongestants and wanted to wait until physical later in August to see if the node was smaller.
4. Decided to go to an ENT instead of waiting.
5. ENT did a Fine Needle Aspiration of the neck lymph node saying it was the cervical lymph node - confused me because I thought the cervical nodes were someplace else in the body.
FNA was not conclusive.
6. ENT did an incisional biopsy removing the lymph node.
7. The pathology report said the node was squamous cell carcinoma and the ENT said she needed a PET scan to try to determine the primary cancer.
8. PET Scan was done and the ENT said it showed up in both of the Tonsils part of the tongue and another lymph node on the left side of her neck - so tongue, bilateral tonsil and bilateral lymph nodes in the neck. In addition there was a lit up spot on her T2 vertebrae in her spine.
9. ENT referred her to a radiation and medical oncologist for treatment saying he did not want to do surgery on tonsils because of bleeding and healing problems.

So we are in that scary place waiting for doctor appointments and wanting to do the right things and learn to ask the right questions.

Because of the questions you and David have asked I am wondering if she even has tonsil squamous cell carcinoma. How can we be sure unless there is a FNA or biopsy of the tonsil or maybe the tongue or both???

In any case it seems we are moving in mud because it takes so long to get these appointments set up and we are not sure who is in charge.

I am going to try to get more information on MD Anderson and how to get an appointment. We have also been talking to Dr. James Suen University of Arkansas Medical Sciences about her diagnosis -

Does anyone know of Dr. James Suen UAMS University of Arkansas Little Rock?
Thanks,
Cheryl

Cheryl,

If you would like to talk feel free to call me at 727-322-5669 during the day.