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!

Welcome to OCF!

What type of cancer did you have? Bloodwork will not necessarily show you have oral cancer, at least that is correct for squamous cell carcinoma (SCC). You may have some problems with your thyroid or anemia making you feel run down.

The first time I had cancer I felt lousy. I felt like I was just beginning to get the flu, achy and just not quite myself. Second time I noticed the lesion but felt ok, the third time I was diagnosed I thought for sure it must be a mistake. I felt healthy. The day before my doc told me I was Stage IV, I went on a 25 mile bike ride with my son. I had never felt better but I was really very ill. So you see, you can never really be certain at least that was my experiences.

You should be having follow up check ups by a qualified ENT. What about scans? I would suggest seeking out a second opinion at a large cancer center where they have a better chance of being familiar with rare cancers.

Cancer centers

Hi,
I think Christine is right about those feelings not being reliable. And as far as I know there are no hematology lab findings that point to oral cancer.

On the other hand, you might well have some things going on that aren't really related to having cancer, but they could be a result of having had cancer. No one is more aware of this than myself as I had 3 deficiencies to be corrected. Heck, I might have more than that, but I feel so much better now after having the supplements I figure it can't be too bad. When I get done with the supplements I'm going to put myself on a good multi-vitamin. One of the deficiencies was copper which is related to a lowered WBC count. My WBC was lower than what it had been pre-radiation, but then got back to a normal range, only to dip again recently. Who knew that copper deficiency was connected to a below normal WBC level? Look it up, it is. The proof is that after copper supplements my WBC is normal again. The point is your readings may mean something unbalanced in your system that is easily remedied. Actually I see a PA a lot too, but he is fairly aggressive at ordering for me because of my history.

What led me to check out these things? I felt crappy, but couldn't explain it. My doctor asked, "are you depressed?" I said no, I just wanted to get well. He wrote down "depressed" on the lab orders. Anyway, I was irritable and depressed, just didn't realize it.

So if you can find a way to see a good internist about it that might be helpful. Regarding the lack of scans, some places don't scan unless you have symptoms that would indicate a recurrence. I recently asked my PA to my ENT oncologist how unusual it would be to have a recurrence and not have any symptoms. He replied that for me it would be unlikely. This is why I am not having a CT scan for this next appointment.

Nevertheless I can understand your worries. Do you take any vitamins or supplements? You probably shouldn't supplement randomly, but a good multivitamin wouldn't hurt any.

Best,
Anne