Hello, everyone. I’m new here, I was searching for a forum to find some support for my son’s new diagnosis. It’s been a crazy road that has lead to an unexpected, scary, and somewhat confusing diagnosis of a Neuroendocrine tumor…in his middle ear. He’s 15 years old (almost 16) and all this started with hearing loss in his right ear. The doctors thought it was fluid and he went on multiple rounds of antibiotics and steroids, then a couple procedures to needle remove the fluid, when that didn’t work they ordered a ct that showed a “thickening” and we were sent to a specialist. The doctor tried to put a tube in which was unsuccessful. The next step was a mastoidectomy which resulted in finding a mass filling his middle ear and wrapped around his hearing bones. The doctor wasn’t expecting to find it and removed what he could for biopsy, but not knowing what it was and not wanting to jeopardize his hearing, he didn’t get it all. The specimen was sent to pathology who thought it was Neuroendocrine but sent it off to the Mayo Clinic for specialized testing for a final diagnosis. We had to sit on that for 3 weeks before getting the call that it is a Neuroendocrine tumor.
We are now waiting for the team of oncologists to meet next week to discuss treatment and figure out where to go from here. His doctor said they will likely order blood tests and imaging before we go meet with them. From what he says this cancer is rare but especially rare in his age group and extremely rare in this location. They may have to reach out to other doctors for advice on treatment. I really just feel left in limbo without much information on outlook or even a slight glimpse at what to expect. Not that it’s anyone’s fault, he told me not to google it because it won’t pertain to his case and it may be confusing but of course I’ve been googling everything I can find. Any insight, advice, or really just anything is greatly appreciated.
Hi AwayWeGo87
Rare tumors are more challenging for everyone and while google can be something of a useful tool to show that that your son's diagnosis is rare then there is really not much to be gained from looking at this. My wife's cancer - Leiomyosarcoma is also rare and perhaps the positive in that is generally we got to see the top staff member all the time.
What many of us find is that we focus more on the day to day while we wait for the next appointment, the next scan, whatever and get to learn that most of all what we need is patience.
I ended up doing a living with less stress course that helped me focus on the hear and now and appreciate what we have. I also learned conscious breathing that helps me when live throws us another curveball but can be great for relaxing and getting some sleep.
<<hugs>>
Steve
