How I was diagnosed with Parotid Gland Cancer (High-grade NETs)

Posted by denisebrown67 @denisebrown67, Dec 22, 2020

I would like to share some of my symptoms I experienced when I was first diagnosed with High Grade Neuroendocrine Carcinoma in my parotid gland. I experienced pain on the left side of my face in the jaw area. My jaw felt like it was locking up, it was difficult to open my mouth to eat, yawn or speak. I also found a small lump right below my ear lobe. My mouth hurt on the left side. I first thought it was a root canal that went bad. So my first step was to go to the dentist. I went there and they found an abscess on my upper part of my gum above my tooth 14. They removed it and said come back in a year. 2 weeks later the pain got even worse in my jaw area, so I went to my medical doctor. His first thought was parotid gland infection, so he put me on strong antibiotics for the weekend, and of course they didn’t make any difference. So I went back on Tuesday and he ordered a CT scan of the area. It came back with a tumor on the parotid gland. He sent me to an ENT, they ordered a biopsy of the tumor. It was the “rare” cancer High grade Neuroendocrine Carcinoma. They referred me right away to Mayo Clinic in Rochester MN, within a month I had surgery to remove the tumor. The tumor was 2.5 centimeters. The facial nerve was sacrificed, so I suffer facial paralyzes, similar to that of someone who has has had a stroke. Fortunately, there was no spread of the cancer, the lymph nodes were clear. I endured 36 radiation (proton) treatments, and 4 rounds of chemo. The pain from the treatment and nerve damage has been severe. I continued to go back every 3 months for MRI’s.

Sept.2020 I had pain in my upper spine. I never have back pain. I am a huge gardener, so I went for massage, chiropractic care and then my primary care physician. She did an xray and did see a cloudy area in my spine. With my history of cancer she ordered a CT scan, that is when they found the 2 spots on my liver and on my spine – V9. This is 3 years after my first diagnosis. She had me do a PET Scan to confirm and it showed up there as well. I was once again referred to Mayo. With an MRI they also confirmed the cancer. Next step was an ablation to the liver for the tumors, and radiation to the spine, focused cancer treatments. The ablation went fine, the radiation was rough. They planned to do 3 treatments, but I had too much pain so they did 2 instead. The oncologist feels with the severe reaction from the 2 treatment the tumor will be gone. So I go back in February for the PET Scan and MRI of my face.

If you have an unexplained pain….go get it checked. It is so important to detect the cancer early.

Hi @denisebrown67, I really appreciate your telling the story of your diagnosis of High Grade Neuroendocrine Carcinoma in my parotid gland. I added this discussion to both the Head & Neck Cancer group (https://connect.mayoclinic.org/group/head-neck-cancer/) and the NETs group (https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/). I did this so others will benefit from your story and so that you can connect with other members with parotid gland cancer like @mrf @gypsygem and @sepdvm

Denise, I'm relieved to hear that you got speedy medical care this fall to investigate the recurrence despite the pandemic and that your primary care physician knew to be thorough given your history of cancer. When was your last radiation treatment? How is your back pain now?

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@denisebrown67, Thank you for sharing your story regarding your parotid gland. I'll tell you mine. The parotid gland on my left side became swollen shortly after I received new hearing aids in both ears. I thought it was a reaction to the material used in the hearing aid so I mentioned this to my audiologist. I bought my hearing aids in a clinic that had otologists in the same building. The audiologist left the room and came back with one of the otologists. The otologist sent me to an ENT. The ENT ended up removing the parotid on my left side. The parotid tissue was sent for testing and it came back negative for cancer. Not sure what caused the swelling but it did not cause too much discomfort. The only side effect I have with the gland removed is that whenever I chew food, I sweat on that side of my face.
Tony in Michigan

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