Angela’s 2nd Opinion for Rare Cancer Reoccurrence

5 years ago I was diagnosed with a rare cancer called Adenoid Cystic Carcinoma. I’ve had 2 surgeries and 30 rounds of head and neck radiation for treatment. In September of 2015 I was told I was NED (No Evidence of Disease) and continued regular follow up and scans because ACC most often always comes back. 

In 2018 I stared to develop left sided ear pain, headaches and dizziness. I was recommended to see an inner ear specialist. I was told due to radiation damage I’ve developed inner ear damage causing these symptoms. 

2019 My symptoms started increasing. The inner ear specialist ordered a hearing test that determined left sided high frequency hearing loss that lookedto be caused by nerve damage. She ordered a stat MRI. I had 2 MRIs one in December one in January.

The MRI indicates possible Perineurial Tumor Spread. The concerning thing is that there was a little progression from the MRI in December compared to the MRI In January. This isn’t a diagnosis yet. We need a biopsy to confirm. 

My doctor isn’t comfortable doing a surgery to biopsy the nerve because it will leave me with permanent damage and numbness in my face. I was told if it came back positive for ACC there is no further treatment available for me because ACC is chemo resistant, I’ve already had the max amount of radiation, and there is no way he could remove it all because nerves act like tentacles. 

At this point I am scheduled to have MRIs every 3 months to watch it. 

My family and I have agreed that it is time for a second opinion. 

I contacted MD Anderson in Houston Texas. One of the top leading Cancer Hospitals in America who have Doctors that specialize specifically in ACC. They have clinical trials for ACC that might be able to help me, and they might be able to preform the surgery without leaving me damage. 

I have young children that need their mother. 

My family has been generous to help me get to Texas but it is expensive with flights, hotels, and medical costs. Anything would help us! 

Thank you from the bottom of my heart for taking the time to read this. ❤️