I am new to this post but am afraid I may be experiencing a reoccurence of cancer removed two years ago. Unfortunately, as a veteran, my primary care is through the VA and my primary care 'doctors' have all been PA's. For over a year they have blown off all of my symptoms and refused to let me get hematology panels. I am finally getting a maxillofacial MRI on Friday and going outside of the VA to the oral surgeon who first saw my case to have it read and have an exam. No follow-up imaging was done by the VA to make sure they fully excised the cancer in the roof of my mouth two and a half years ago. I am wondering from your experience how important the symptoms of how you felt and lab panels were in leading to your diagnosis (outside of obvious oral lesions)" Ever since the surgery, I have still been feeling poorly as I did for 6 months before the roof of my mouth fell out. I have EXTREME fatigue (went from sleeping 5 hours to 12 hours a night and still wake up tired, sinus headaches several times a week sometimes so excruciating that I cry, often cannot grasp objects or they fall out of my hands, weakness in legs. Now my lymph gland under left ear is swollen, I get periods of being clammy/sweaty and cold several times a day and cannot get over a respiratory infection. For at least a year, my lymphocyte count has been lower than the lowest end of the normal range and often my white blood count is very high but my doctor says it 'means nothing'. Should I go outside of the VA hospital to get full blood panels? Is this information really important for diagnosis of a return of cancer? I have asked my doctor for hematology panels many times but they all refuse. Thank you so much!


12/10 diag w/ very rare form of cancer of salivary gland in palate after roof of my mouth literally fell out. 2/11 surgical removal. No post surgery imaging or hematology to date as Phoenix VA hospital refuses despite repeated requests. Have had more symptoms for over a year.