This is a VERY common story. Jon needs to pursue an answer to his symptoms that make sense. How would you advise Jon?
Dear Eva,
I am a 28 year old tobacco dipper and drinker. Two months ago, I started getting a lump in my throat when swallowing. Now it has become just pain when swallowing on the one side. Also, about a month ago, my tongue felt like it was swelling on the same side, and is a relatively constant numb or tingling feeling.I have been to 3 GPs and have had extensive blood work. I have also been to two ENTs who have scoped my throat and not noticed anything suspicious. Last week I had a CT scan as I have also had a “fullness” in my neck on that side.
The progression of my throat pain really scares me, and the doctors seem to not think it is anything to worry about, but they have no explanation for it.
I am really lost and don’t know what to do next. Do you have any suggestions?
Thanks,
Jon
Dear Jon,
I’m pleased to read that you are trying your best to advocate for your own health. That is extremely important! You need to go to a major medical center near where you live. I will help research the right person for you to see.
The drinking and dipping may have nothing to do with what you have, which may be an HPV (Human Papilloma Virus) associated issue. Many docs are still learning about HPV, but it is becoming an epidemic.
You are absolutely right to pursue this. Don’t let anyone tell you it’s nothing. It’s something. You know your body better than anyone. So, let’s get started ASAP.
Eva
Dear Eva,
I tried to get an appointment at the big Cancer Center near me, but they wanted $600 just to get in the door and my insurance would not cover that. If that’s what it takes, then I will do it, but I was hoping my doctors would be able to come up with something.I have a dentist appointment on Friday, and I was advised to ask about TMJ. Also, my ENT comes in on Wednesday, and hopefully he will also be reviewing my CT report.
Thank you so much for responding so quickly. I feel like you care more than most of the doctors I have seen so far!
Jon
Jon,
Start by calling your insurance company and tell them that if it’s cancer, it will be well worth the $600 to catch it early. Also, you can contact the billing person at the cancer center and tell them you don’t have the $600 but you are in conversation with your insurance company to cover it, but you need to see a specialist sooner than later in case it is cancer. They usually will be happy to do something for you…but only if you ask.
Try to get in with an ENT who has oncology training. Like this doc: http://doctors.ucsd.edu/Details/11792
Let me know how you do. I’d be happy to help you any other way I can.
Eva
Hi Eva,
No answers. I went back to my GP two weeks ago today with another swollen lymph node. He prescribed antibiotics and another round of blood tests including C-Reactive Protein and Erythrocyte Sedimentation Rate to check for inflammation, which came back in normal range. He also did Epstein Barr Virus check, which came back positive, but with the antibody meaning it was a past incidence.After enough complaining I was able to get another appointment with an ENT, however, he just felt around my neck and looked in my mouth. He didn’t even pull out the endoscope for me, and didn’t even notice the swollen lymph ode under my chin even after I pointed it out (it is located near the salivary gland in the front of my chin). He did NOT palpate the floor of my mouth, which is how I am able to feel this lump. He ended up referring me to a spinal specialist to check for nerve damage, but I was out of town last week and I haven’t had a chance to follow up yet.
I am pretty much at a loss as to what to do. I have read multiple stories about how Base of Tongue and some Tonsil cancers present themselves exactly in this way, sometimes for years, before they are visible. No doctor seems to take me seriously, and it seems a biopsy is out of the question.
Thanks for your concern,
Jon
The conversation continues….
