Hi everyone,

It's been a long time since I posted here, but 6-8 months ago I posted on the site with concerns about my array of symptoms. I had a biopsy done of an area of concern and it came back negative for malignancy.

Unfortunately, that was not the end of my adventure. I finally got on state insurance, which is way better than nothing. I got my hopes up pretty high at that point (5 months ago) because I thought I would finally get to the bottom of all of this. My doctor, however, has turned out to be, well, not my favorite.

Regardless, after supplying him with pages of symptoms and moaning weekly, he finally referred me for a neck ultrasound (only after referring me to psych). I asked for an MRI or CT but he says that my insurance requires evidence to show these tests are needed. When I asked what kind of evidence, he said a lump or mass! I had already shown him five, yes five, of those.

So today I finally had that ultrasound. I won't find out the results until next Wednesday, but I am glad some sort of imaging has finally been done. Of course the tech can't tell me anything, but she was taking measurements of the masses on the screen and had arrows pointing them out, so at least I know she saw what I can feel.

I don't know for certain that it is oral cancer, but I am strongly suspicious given the symptoms I have had. Pain in my tongue, cheeks, and jaw. A good sized mass in my left cheek below my cheek bone. The area previously biopsied healed and then returned to its orginal state of concern. Tingling and burning sensations in my face and forehead. It is certainly possible that something else is going on, but I am not too optimistic at this point.

I am fearful about the length of time it has taken to get to this point in the diagnostic process. I am high anxiety as a result of my symptoms, but I don't have general health anxiety. The doc referred me because he felt that I was stressed, but fearing the worst and getting no answers will do that to a person. I have been very sick aside from my other symptoms and some days I don't have the energy to walk from my room to the kitchen. If that doesn't stress someone I don't know what will.

I've kept reading the forums over the months, and my heart goes out to everyone who is waiting on diagnosis and to those who have been battling this disease. Thanks in advance for any advice and support. I will do my best to return the favor.

Hi Penny. Remember it isn't cancer until a biopsy says it is cancer. I will pray that your results are negative. Waiting like all of us know is very difficult. Try not to dwell on the "what ifs".

Please keep us posted.

Defitpnitely - let us know - your results seeing as its an ultrasound should be almost immediate - ultrasound - cts - and MRIs are all available within a few hours - if your dr. doesnt have electronic patient charting, and it takes him a bit to get his results thn he can call for a verbal - its Friday don't wait the weekend call and see. Hugs and hoping its not cancer.

Cheryl,

Thanks for letting me know about the speed of the results. You were right and they do have them. Unfortunately my doctor has no opennings before next week, and according to the clinic the only way I can get my results is to come see my doctor. Any ideas on how I can pressure them to give me the results now? I go to a state-run clinic, so I'm afraid I might just have to suck it up and wait. Sucks, though, I've been waiting so long already. Took three months for the referal for the ultrasound to get approved.

Thanks for the well wishes and I will keep updating.

Penny:

They'll release results to another doctor is requested. Do you have a doctor of any sort who would call and ask them to FAX results to them, and then they can call and tell you? Hope so, waiting is the pits - also pray everything GOOD results.

Julieann

Actually, the results have already been sent to the clinic. So I got to thinking, they pretty much have to release my medical records to me. So I called the records department and have arranged to pick up my documents in an hour. The guy in records was a little leary because the doctor hasn't read me my results yet, but he said I can have them anyways. Not sure what I can find out from it but worth a short trip. I also requested copies of all my other testing, bloodwork, etc for my own records.

I've tried to callback thing. Every time I have asked for a simple callback from the doctor so that I can ask him a quick question they make me schedule an appointment. The clinic I go to is extremely busy constantly. I'll be back in about an hour with my paperwork!

That was what I was going to say. They usually will give us a copy as soon as it's available.
Waiting....
Kathy

Well, I got my ultrasound report and I am not entirely sure what to think of the results. The good news is they didn't see any lymph nodes over 1cm.

"Scanning in the right and left submandibular area demonstrates small lymph nodes measuring less than 1 cm in short axis. Scanning was performed just inferior to the ear lobes bilaterally, also demonstrating small lymph nodes with short axis less than 1 cm.

Impression:

No abnormality identified in the medial neck in the region of palpable abnormality.

Small subcentimeter lymph nodes in the submandibular area and inferior to the ear lobes, not felt to be pathologically enlarged. These are nonspecific."

While I don't know how my doctor will interpret this, I am hoping he will take into account my history and the fact that this swelling has been going on for over a year and opt for further testing. Obviously I won't know any more before talking to him Wednesday, but this is where I am so far.

Cheryl thanks so much for suggesting I can get my results sooner. I would have just waited until Wednesday if you hadn't. I do feel a little better knowing the lymph nodes aren't as large as they feel. It gives me hope that maybe things are at least not as bad as I think they are in that respect.

Penny - You say " Every time I have asked for a simple callback from the doctor so that I can ask him a quick question they make me schedule an appointment." When I had questions (re my own TX unrelated to my son's Tx) , I FAXed them to my doctor directly and got a call back the next day from his nurse. With a different doctor who was working with the first one, when I sent him a FAX with several questions, the doctor himself called me back and answered all the questions. I don't see why you would need to make an appointment. Hope things go well and you get your questions answered.