Hi, my name is Kathy. I am 63 years old, and I live in coastal North Carolina. Apologies in advance for what's sure to be a lengthy post. The process of writing is helping me to organize my thoughts.
Four days ago I was told that a problematic spot on the side of my tongue is stage one cancer. I was knocked back on my heels, especially considering that seven weeks earlier it was only “moderate dysplasia”. Now that I am mentally processing this, and getting more informed, I am trying to put together a list of questions which I should ask.
Here's my timeline, and what I know so far:
11/2016: My dentist noticed a spot on my tongue that worried her. She wrote me a prescription for Kenalog. The pharmacist said “they don't make that anymore” and pointed me to the OTC Orabase (grr … I now know that the twit wasn't doing her job).
03/2017: When the spot failed to heal, the dentist referred me to an ENT. He wrote another prescription for Kenalog, (filled by a pharmacist who was NOT an idiot) and when it still wouldn't heal, he did a punch biopsy. I believe the result was leukoplakia and glossitis. I saw the dentist in May, and she was glad I had it looked at.
01/2018: In November of 2017 the dentist was again worried, and suggested I return to the ENT, which I did in January. He referred me to a more specialized ENT a couple hours away near a big teaching hospital. She did another punch biopsy in late February, which came up as moderate dysplasia, and a CT scan (because I was complaining of fullness and itching between my ear and jaw) , and scheduled a recheck three months out.
04/2018: Halfway through the three months, I was very concerned about slow healing, and discomfort (would get better and worse). I called her after a bad weekend and they got me in that very day. I never expected to be subjected to TWO punch biopsies just 7 weeks later … YIKES!
So here I am with a stage 1 dx, feeling like a deer in the headlights. The pathologist reported that the cancerous cells went down through the entire depth of the plug, therefore the Dr is planning to take the lymph nodes at the same time she does surgery on the tongue. That's scheduled for June 12.
I am trying to get the reports on all three biopsies, and the CT scan, but I can't get them until Monday. I plan to schedule a consultation with a nurse friend who used to have a healthcare system navigation business, and was also assistant to the radiation oncologist at our local hospital. (I used her services in pushing to get my elderly mother's needs meet when she was in a rehab unit).
So now I'm trying to make a list. So far I have:
1) Should I seek a second opinion re/ treatment options?
2) ???? (brain fog sets in and my eyes glaze over)