Here is everything I know about my Mom�s 2 month Kaiser oddysey before being diagnosed with Squamous cell cancer on her tongue:
4/26/11 Initial with Primary Care doctor � Referral to Maxillofacial Surgery.
4/29/11 Referral didn�t arrive. Called to have referral sent again.
5/4/11 Appointment cancelled � Dr. ill.
5/9/11 Appointment cancelled � Dr. ill.
5/12/11 Initial visit with Dr. X

She told him about the 2 months of pain on tongue, roof of mouth and ear. He diagnosed sore on tongue as a common ulcer. He said he didn�t see anything on the roof of mouth. Ear discomfort could be from inflamed facial nerves. Gave her Kenalog which she started on 5/12/11. Told to come back in 3 weeks.

6/1/11 Three week follow-up visit with Dr.X
She told him the pain was still extreme and still could barely eat. She asked him about a biopsy and he told her it looked like it was better, that cancer usually isn�t painful, a biopsy would open up the ulcer again, and that she should get a tooth guard. She still wanted a biopsy since the problem was difficult to deal with particularly eating for almost 3 months. He did the biopsy and she again asked about the roof of my mouth and my ear and he said it could not spread that way nor could it affect her ear. He gave her another prescription to continue the Kenalog. She asked if there was any other kind of medicine she could use because Kenalog wasn�t working. He said no and that there wasn�t really any magic bullets out there for the problem.

6/9/11 Call from Dr.X that result was positive for squamous cell. He said he would have staff make Cat scan and other necessary appointments. He said that surgery would require a simple removal of layers of skin and that it was in an early stage. She again asked him about her ear and also the continuing pain in the roof of my mouth and he said he thinks they aren�t involved with the lesion.

6/16/11 CT scan appointment. Surgery scheduled for 6/23/11 with pre-op appointment with Dr. X on 6/22. Supposed to hear results of CT scan on Monday 6/20/11

6/20/11 Dr. X never called.

6/21/11 -Appt. with another surgeon at Kaiser for 2nd opinion. During consultation, Dr. X calls and has 2nd opinion doctor leave the room take his phone call. The results had come back from CT scan that shows an abnormal shape on the base of the tongue and also a lymph node below the tongue looks enlarged and asymmetrical. Surgery cancelled. 2nd Opinion doctor defers his opinion to Dr. X.

6/22/11 Another biopsy on base of tongue.

6/24/11 Biopsy comes back negative.
6/28/11 Still waiting to hear from Dr. X regarding course of treatment. At this point my Mother has absolutely NO CONFIDENCE in Dr. X. I am working to try and get her another doctor, but we are within Kaiser Permanente Southern California system and it�s difficult.
What other questions do we need to ask? How will they treat the lymph node? What if it�s spread? Is there a way to see if it�s spread?
Thanks. I know this is long, but I don�t feel like we have anyone to talk to at Kaiser at this point.

Not sure about your ins but I would get here to a CCC ASAP and I agree that Dr X sounds very deficient re oral cancer.

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

In this case a PET scan would seem appropriate before a Tx plan could be determined.

I agree with getting a new doctor. Even a second opinion should be done at another facility. A cancer center is always the best option as they are the most experienced with the highest success rates. There would be a treatment team to evaluate your mother and the best treatment options for her. At cancer centers they treat hundreds of oral cancer patients per year instead of a smaller facility where they see one every few months.

I understand how important insurance coverage is but please dont let that determine the outcome of your mothers treatment. Most hospitals and cancer centers are happy to make payment arrangements and many will give discounted care. Some places will provide 100% of care for free.

Best wishes with finding the proper help for your mother.

You have gotten such good advice above! Please do get another opinion. I can certainly see why your Mother has no confidence in the doctor. When my son was diagnosed with SCC on his tongue, he had been having a LOT of pain and had put off going to the dentist because of not having insurance and no job. The hospital was very kind about allowing us to make very small monthly payments and they also had a program where a drug company forgave the cost of certain group of drugs. Please do get to a cancer center. Your Mother's health is important and she deserves the best of care. Let us know what happens.

Ditto for me too... Get a second opinion at a cancer center. Your mother has already waited too long. Dr. X is a hack - sorry but tongue cancer is painfu! I had trouble eating for years! And yes ear pain can be attributed to the whole thing. I had ear pain because of the lymph node I had involved. It's possible whatever is going on in her throat and her node is related is causing her ear pain. Take care and best of luck with your mom.

Oh and in answer to your question about lymph nodes... Usually tongue cancer (not base of tongue) is treated with surgery, what they usually do is perform a neck dissection to remove a bunch of nodes. Then after the pathology comes back the determine whether chemo or rads is required. Take care.

I think several patients on this forum with Kaiser Insurance have been treated at the CCC's in southern California. I would start calling them to see what ones take Kaiser.

Take care,
Eileen

Thanks everyone for your help. She insisted on having a PET Scan and they have scheduled one for next week. That makes me feel somewhat better. She has also insisted with an appointment with the head of the department. He has over 30 years of experience with Head/Neck cancers. So I'm hopeful things are on the right track. I will look into the CCC's though. Thanks

At the time my husband Ron was treated for his throat cancer, he had Kaiser Insurance. His ENT was at Kaiser in Woodland Hills and when he was diagnosed they sent him to Los Angeles where a whole team of Doctors examined him and determined the best treatment plan for him. I have to say I was very impressed with the way Kaiser treated my husband. Maybe we just got lucky. Best of luck to your Mom!

Shelley

Glad you got a great dr. I did the same here - was recommended to him through someone in his field - a friend asked him who he would sent a family member to and that's who I went to. Hopefully things wil move quickly for her. Take care!