Here's my situation:

~Husband diagnosed with SCC of the right tonsil in May 2002. Tonsil was removed and treatment with chemo and radiation followed through the summer and into the fall. He generally tolerated the treatment well. Staging was given as T2N1M0.

~He has been consistently followed these last four years by oncology and the ENT with nothing but good reports.

~He found a lump in the right side of his neck. After exam by the ENT, my husband underwent a radical neck dissection about one week ago.

~We have just learned that of the 20+ nodes removed, 13 showed some cancer. All the other muscle and tissues were apparently clear.

~We'll be meeting with the ENT Monday for the staples to be removed. On the phone, the ENT said he would refer us back to oncology for further consultation. He did not believe that radiation would be an option this time.

Here are my questions:

I need to know what questions to ask both the ENT and the oncologist when we see them.

Where are the leading sites for treatment of head and neck, especially recurrences of this type?

I know insurance and payment shouldn't be the final issue, but if I can get somewhere that insurance could cover us, all the better. Anybody familiar with what might be happening in the midwest..University of Louisville, University of Chicago, Indiana University or possibly Cleveland Clinic?

I'm feeling like the wind has been knocked out of our sails....again.

Loretta

I am sure others wil post here as well, but first take a look at this years evaluation of the top 50 cancer centers in the US on the OCF resources page, about 1/3 the way down, a link that says "Best Hospitals" It is a very independent review of who is out there and how they rank.

Also, please ask your doctors for a full body PET/CT fusion scan now to make sure that this cancer has not left the local/regional area of the head and neck. I do not wish to alarm you, but clearly the lymph system is a pathway to the rest of the body. The earlier you know what's what the better.

While this is not important to you right now, I am curious what kinds of scans were done at the end of the original treatment, and what kinds of scans have been part of his annual follow up, and if a neck dissection was offered to you at the end of his treament?

Obviously we are all concerned for you. I wish you the best as you gather more information and move towards dealing with this.

Thanks, Brian. I'm sure the resources you mentioned to look into will be very helpful.

I'm in the process of gathering all the records from prior treatment now. If my recollection is accurate, though, the only PET scan he had was after the diagnosis and before the treatment began. All was clear. It seems the oncologist did not endorse the suggestion of a repeat PET after treatment. I can't recall that any other scans of the neck of been done post-treatment until my husband noticed the lump in his neck.

Surgery was not mentioned at all after treatment.

Thanks again for your support.

Loretta

Hi, Loretta-you are right- a recurrance diagnosis does take wind out of our sails. The only consoling words I can offer are these: This time around, you will be more familiar with the terminology, more informed going in, you will know better how to prioritize your time during his treatment, what help you can ask for from family and friends, etc. While youall are selecting the place to be treated, start reading about the chemo combinations that are being used today so you can ask good questions about what the Doc is planning to use. [in our case, John's recurrance was treated by another surgery plus more neck dissection. Then he started on Carboplatin\Taxol, which did nothing to the tumors. He could not have more rad. So now we are doing the Erbitux. Asking ahead for Step 1, 2, 3 will at least give you something to research. You both got through this the 1st time, you can do it again. Amy

Let me correct myself on the surgery option...the ENT did not rule it out as a possibility until treatment was finished. I think he was open for that possibility all along.

Loretta

Loretta,
I, and several others on the board were treated in the Head and Neck Cancer program at the University of Chicago. If you decide to check them out after your research, I can provide you with some names and numbers to contact there. There is a lot of information available on the website, including clinical trials info, and a lot of the published work of the doctors in the program. I don't want to look like a salesman for a particular institution, so I will just offer myself as a source of info.

From an insurance standpoint, they were considered a preferred provider for my Blue Cross/Blue Shield insurance, so that was a big plus. My roommate throughout the program was from Crown Point, Indiana, and his insurance also considered U of C to be In-Network.

Just PM me or e-mail me with questions about specific Doctors.

They are a CCC, and use the team approach.


Chuck

Chuck,

Thanks for your reply. I have emailed you asking for more information.

This message board and website are a God-send.

Loretta

There are several CCCs with ongoing clinical trials for recurrent HNC -- a recent handout distributed at J. Hopkins showed over a dozen trials. Most were multi-institutional (that is, participating institutions are in many areas of the country). I don't have the list at hand but many were examining the role of Tarceva or Erbitux plus additional (standard) chemo drugs. Our RO has one which is looking into a new re-radiation protocol. Many of these are funded by NCI. You could look onto their web site (clinical trials) or ask at your hospital or at any CCC where you may go for a consult.

For example, my husband Barry is in a trial of a new vaccine -- although right now they are still determining the optimum dose to get the maximum immune response with fewest side effects. As a participant he might personally benefit as the vaccine could help his body "clear" the virus which caused his oral cancer, and thus reduce risk of recurrence. Or it may do nothing, one risk of a trial vs. a standard treatment protocol.

Gail

Thanks, Gail, for the information.

We are in the process of having our first visit at the cancer center being arranged. I will certainly ask about clinical trials for recurrence that are taking place there as well as in other centers near us.

Thanks again.

Loretta

Loretta, sometimes when it gets crazy and time seems to stop is when you sometimes feel unappreciated. On behalf of all your family and friends I want to say I think your pretty special. My thoughts are with you.