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".
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.
My reading of that report would indicate all is well re the nodes but as always I would advise waiting and watching.
Agreed, usually if we is something specifically concerning they will definitely say it of concer or needs watching. Glad it makes things a little easier. Hugs have a good weekend.
Well, I just got back from my appointment, and I must say I have never been treated so poorly in all my life. First off, my doctor basically read me the radiologist report word for word. Mind you I was told without this appointment I would not know my results.
Before I went in, I made a list of the symptoms I've been experiencing over the past weeks, which are a lot of the same ones as before but increasing in severity and occurence. I know how busy the clinic is and I try to be prepared so that I don't forget anything and so that I don't have to waste time trying to think of everything off the top of my head.
He has completely ignored nearly everything I've said to him and told me I need to get exercise. I've been exercising the only way I can currently which is in the pool. I go out 3-5 times a week. Basically what his attitude is telling me is that I am being dismissed as an overweight, ex-smoker hypochondriac. That dismissive attitude has been present since day one.
The one possibly good thing that came of the appointment was a referral to an ENT. The ONLY thing he actually was curious about symptom-wise was the sore inside my cheek that has now been there for at least 14 months. I'm also pretty sure the only reason I got the referral is because he doesn't remember me telling him a few months back that it had already been biopsied. Believe me, I am very thankful that he at least looked at that, though it very well could take another 3 months for that referral to go through. It was biopsied and had fully healed back in February, but has since opened back up with a whole new kind of anger.
I was so happy when I finally found out I was approved for insurance because I truly thought in no time I would be finding out what is causing all of this. I am truly feeling defeated right now. My doctor lied to my face more than once today. The first was about the ultrasound. He said a neck ultrasound includes the thyroid...for those of you out there who need one, it does not. The thyroid US is a completely separate procedure and because it was not specifically ordered the tech refused to do it. When I told the doctor that, he said with a smile, "That is because there is nothing wrong with your thyroid." Then I asked him to do the thyroid panel which he said we needed to do in 6-8 weeks. It has been three months. He said, "It is too soon". All of that while sarcastically smiling and backing out of the room while I was still trying to talk to him.
Has anyone experienced such a thing? I know I haven't. I've never much cared for going to the doctor, but I never would have expected that. Anyway, sorry for venting. I am just so sad. I feel like I am losing the will to fight and I don't even know what I'm fighting yet.
I can totally see why you would be furious. You have to get someone else! YUCK! When do you see the ENT? That is a good thing at least. I would have had a hard time not calling him a pompous a-- and walking out on him. Would be interesting to know if he treats everyone that way.
Hang in there. I'm so glad you are comfortable enough with us to share what's happening.
Will be waiting to hear what the ENT has to say.
Kathy
Sometimes drs have a preset notion of how things are they make up their mind and to accept the possibility of another idea might mean they're wrong. See someone else.
I am going to get a new doctor. Last week he sent me out of the office telling me he was referring me to an ENT. My discharge paperwork even has that noted on it. I call today and find out he never put it in the system. Unbelievable. I suppose I really shouldn't be all that suprised at this point, but somehow I am.
I called to report him to my insurance and I was told I have to call the clinic's administrative office to report my issues. I can just imagine the awesome level of care I will receive at the clinic after putting something like that in motion.
Anyhow, just thought I'd update.
I was wondering, is there anyone that has been diagnosed near the San Diego area that may be able to refer me to someone who specializes in this area?