Posted By: Tamsin Anyone awaiting diagnosis, feel so alone - 01-24-2014 05:22 PM
Right now i have what pain in the side of my tongue and starting to bother me in my right tonsil. It feels like something is eating into my tongue at the back and when i look there it is bright red with patches of bright white tissue. I have been feeling more and more tired everyday. I suspect that this has all come from my tonsils. Should i have trusted the doctor over three years ago when she told me its normal for one tonsil to be smooth and round and the other to be full of lumps. Anyway the bad tissue is terrible far right of the tongue on left side and starting to grow a red lumpy area on the right side, until tuesday no one can tell me what is going on and my partner is in complete denial as to anything being amiss. This has all happened so quickly i just am at my wits end. Is anyone willing to talk to me?
Posted By: EricS Re: Anyone awaiting diagnosis, feel so alone - 01-24-2014 07:00 PM
Tamsin,

First and foremost, you need to be in the care of an Ear Nose, and Throat specialist, preferably at a major cancer center.

All of your symptoms obviously suggest tonsil cancer, which 70% of the time is attributed to HPV. Of course the only way to diagnose cancer is with a biopsy, which I suggest getting ASAP and getting into treatment.

Time is of the essence in cancer, even when the diagnosis is delayed due to the ignorance of our medical practitioners, so the first and most important step is to get into the care of the best medical team available to you. I myself was diagnosed late and have managed to survive despite the challenges, so please don't believe all is lost.

After selecting your medical team, and deciding on those next steps, the only thing you can control is your nutrition and attitude, the rest is up to how your body, and the cancer responds to treatment.

If it is cancer, and is in fact HPV positive, your survival statistics are actually quite good despite the late diagnosis due to how HPV related cancers respond to radiation.

Keep your head up, and let's take the steps necessary to get diagnosed and into treatment.

Best of luck,

Eric
Posted By: Cheryld Re: Anyone awaiting diagnosis, feel so alone - 01-24-2014 11:40 PM
If you are having tongue issues though it could be oral tongue cancer and likely radiating pain, you are saying your tongue is red with white patches that would be my primary concern. Are you having it biopsied ?
Posted By: fishmanpa Re: Anyone awaiting diagnosis, feel so alone - 01-25-2014 03:13 AM
Hi Tasmin,

I've read through your posts. You've been having symptoms since last May. If indeed this was sinister, you would be quite ill by now. In one of your posts you mentioned having extreme HA. I've researched and studied this illness for quite some time now. Your posts are indicative of this.

You've had several doctors appointments as well as several tests including a biopsy that have ruled out cancer. I'm not a doctor nor is anyone else here but it would seem to me that you don't have cancer. However, in my opinion, you are suffering from an illness called health anxiety.

Are you seeking treatment for that? CBT, one on one therapy, meds or a combination thereof may be needed to get that Dragon under control. Anxiety can cause real physical symptoms that mimic serious illnesses. The truth is both can take your life. The difference is one can bury you under the ground and the other above it.

You're young and have much to live for. Perhaps addressing your anxiety would be the best approach in this situation. Of course not smoking and getting off the nicotine lozenges once and for all would be prudent as well.

Positive thoughts and prayers

"T"
Posted By: Tamsin Re: Anyone awaiting diagnosis, feel so alone - 01-26-2014 04:52 PM
hi all

Thanks so much for replies. And yes, i am feeling very ill indeed. I think Eric is right, it is probably tonsil cancer as the mass in my tongue left side is right next to the tonsil. There is another small lesion next to the other tonsil. I am seeing a very good maxillofacial surgeon tuesday. Yes i have been treated for health anxiety but i have also been misdiagnosied. I saw an ent specialist for symptoms with my voice neck who looked for two minutes with a camera and said reflux. I asked my doctor three years ago is my tonsil looked normal because one is round and smooth and the other is full of lumps, couldnt look more different. I was tols this is a normal variation and now i not only have a mass in my tongue, i feel tired as anything, no apetite, and i felt the lumpy tonsil and it feels like it is growing down into my neck. Thanks eric for your posting which i think is what i am facing. Fishmanpa yes, i have been on here a while cause i had a mouth ulcer last year that failed to heal and was biopsied.
Posted By: Tamsin Re: Anyone awaiting diagnosis, feel so alone - 01-26-2014 04:54 PM
Thanks eric i have replied to your posting. Yes, im pretty sure it is my tonsils which to be honest if you read my posting i have been rather let down by the doctor and a useless ent so called specialist. However, i am seeing an oral surgeon who i trust very much. And anyway who needs to trust, he only needs to look in the corner of my tongue.
Posted By: Tamsin Re: Anyone awaiting diagnosis, feel so alone - 01-26-2014 04:58 PM
cheryl thanks for writing. Yes i am seeing oral surgeon tuesday and i cannot see why he wouldnt biopsy my tongue since ive been feeling for months pain which u now believe is coming from the red and white patch of lumpy tissue which feels like its growing into me. But its very close to the tonsil. And another lesion is starting up on other side also right next to the tonsil.
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