Hi there, haven't been into the site for awhile. My husband Tim went for another checkup post rad. on the 11th of Nov where the dr. found an area at the base of his tongue (rt side) that she didn't like. We went for a PET scan which showed activity, could be anything from reoccurance of the ca, to radiation healing. Had a biopsy which set him back due to swelling and pain and he couldn't eat or swallow water for several days. Finally ended up in the ER for hydration and IV pain meds. The biopsy results came back yesterday - no malignancy or even dysplasia seen. Good news, but I guess I'm waiting for the other shoe to drop. Our oral surgeon had already approached Tim after conferring with his PCP about referral to a major center due to his healing problems or lack there of. We are currently trying to get him referred into Sloan Kettering in NYC, haven't heard yet whether they will take him. If not, does anyone have good alternative centers?? His surgeon has also talked to us about a modified radical neck and poss. hemiglossectomy mostly because he has observed this before as the calm before the storm. Before you know it, it shows up in the lymph system and the battle may be lost. Just kind of putting it out there for any thoughts, suggestions. Also, pain management people have suggested methadone for pain control which we had to send for since we need liquid in order to titrate dosage. From what we hear, this is suppose to be a great drug for pain control. Thanks again Rolanda

Rolanda,

Here is a link of the National Comprehensive Cancer Network members:

http://www.nccn.org/members/network.asp

It sounds like the doctors are not sure of what they want to do or lack experience in treating this kind of cancer. I am not judging them and I know something could have been filtered in the translation through you. A second opinion could give you the peace of mind you need right now.

I know methadone is used a lot for patients in hospice as well as initially used to keep heroin addicts off of heroin. I have not, however, heard too many oral cancer patients being put on methadone. There are more cases of using the Fentynal (Duragesic) patch as it is time release and helps the patient stay a bit more lucid than more intense narcotics.

I know all of us, patients, caregivers, family and friends, have the fear of the big shoe dropping from the point of cancer diagnosis forward. A doctor mentioning the "calm before the storm" from PET scan results with a negative biopsy would scare me to death, too.

From your post, I would seek out someone with much more experience with this type of cancer before I let my mind wander too much. For instance, I had the cancer spread to two lymph nodes before I was diagnosed and the battle had not even started. Even my post treatment PET scans have had areas of concern but with very experienced eyes reviewing them, the areas have not grown and all eyes believe there is no recurring cancer.

I am sorry you had such a scare so soon after treatment while the nerves are still somewhat raw. Get an opinion from an experienced medical team and you will be in a better position to determine what might be the proper course of action.

Welcome to the neighborhood!

Ed

I have to agree with Ed. As far as slow healing, if he had radiation then it can take a long time for healing - it took me many months. This can be slowed even more by thrush and other things. PET scans are notorious for flagging activity in scar tissue. It is the biggest reason for a false positive. If for no other reason I would get a referal just for your peace of mind, especially since they are recommending further surgery.

Methadone is on the list of recommended pain management drugs in the NCCN pain management guidelines. Although not that commonly used - most of us here have had either Fentanyl (AKA Duragesic) 72 hr pain relief patches or Oxycontin for the heavy stuff (long term) with Vicodin or morphine for breakthrough (short term). http://www.nccn.org/patients/patient_gls/_english/_pain/3_treatment.asp#CommonlyUsedOpioids

Hi Rolanda,

Both Ed and Gary have provided good advice. In addition to going to a comprehensive cancer center, I would suggest getting a second (and third) opinion. From northern Maine, you are probably closer to Boston than New York and Dana Farber in Boston is one of the centers that would provide the expertise and experience that Tim requires and deserves.

Dana Farber's web site has all the information that you need to get a second opinion there at:
http://www.dfci.harvard.edu/pat/becoming/second/default.asp
Good luck with Tim's treatments. Best, Sheldon

Rolanda,

I can speak from experience if you promise not to ask more , but it is much easier to maintain lucidity with Fentynal than it is with Methadone.

Ed