My Mom Diagnosed with Tongue Cancer. Scared. - 06-28-2011 08:50 PM
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.
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.