Hi Carol, sorry to hear you ve been diagnosed with this cancer, but take heart with me telling you about my story. In 1999 I was diagnosed with ACC of the parotid gland, had the tumor removed and had 2 months of radiation. Everyone has told me that chemo doesn't t do anything for ACC. They thought I d do ok, but 4 years later on a routine chest X-ray I had numerous nodules, so I had a cat scan of the lungs and it looked liked Xmas lights. Had an open lung biopsy done which tested ACC, and also showed numerous little tumors around the peripheral surface of the lungs which is good as there was no airway obstruction. So ct scans every year which showed tiny growths. Take 3000 mg/ day of vit C and also Tumeric 250-500 mg a day. This I m doing on my own, no one told me to do this. As a RN I m constantly researching plus being retired have a lot of time on my hands. Well in 2015, (15 yr post diagnosis), some small nodules in my skull base, one extending into temporal lobe of brain. Went to large hospital in a Boston, was told can t operate, too dangerous. Went to another, told the same thing but was given an option. A doctor at Brigham & Woman in Boston is doing cryoblation into tumors in the head that are too complicated for surgery. It involves no incision, you re under anesthesia, he goes in under an MRI in the Amigo operating room suites and freezes the tumor, thereby shrinking it/ killing it. The brain is the last place ACC goes and-is almost always fatal, however, here I am 5 years later, I ve had cryo 9 times, 3 of the tumors have shrunk or gone. This doc is a godsend. I always go home the day of surgery and I m fine. So I ve had this cancer for 21 years and I will outlive because I-will continue to fight it. Truthfully, I ve had more problems with the initial 2 months of radiation as it destroyed my right ear and did a tune on my cervical vertebrae but that s me, radiation doesn't t affect everyone that way. This doc in Boston can keep head cancer patients alive but not enough people know about him----Dr. Thomas Lee, neuroradiologist, Brigham and woman s hospital, Boston. I was told at Dana Farber that he s the only one I the country that they know of who will do this. Take heart Carol and fight. 21 years!!
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