Blia’s Story

Site created on October 12, 2018

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On August 8, 2018, after roughly five years of discomfort and pain, Blia had surgery to remove what was thought to be a preauricular cyst located near her left  jaw.  After surgery, Dr. Walton announced that the surgery went well but the cyst removed visually appeared to be cancerous and was sent to lab to be tested further.

On August 14, 2018, during her postoperative follow-up appointment, Dr. Walton shared that the biopsy confirmed she had Stage IV adenoid cystic carcinoma and recommended consultation with radiation oncologist, Dr. Coster, at the University of Kansas Cancer Center for an aggressive radiation treatment plan.

On September 6, 2018, Blia's siblings urged her to seek a second opinion and possible treatment from Mayo Clinic in Rochester, MN. She agreed to the recommendation. 

September 24, 2018 was Blia's first evaluation and consultation with Mayo Clinic Radiation Oncologist, Dr. Ma  and Ortohinolaryngoloist, Dr. Janus and his team. 

Based on the CT scan done in Kansas City from July 2018, Dr. Ma showed us there was still a substantial amount of residual tumor left in the neck, parapharyngeal space as well as the floor of the mouth in the left root of her tongue.  He believed radiation treatment would be an option and recommended doing proton beam, but first, he wanted us to see Dr. Janus for further discussion about removing the tumor prior to radiation treatment.

Dr. Janus explained the surgery to resect the area with negative margins would be extensive including likely lip split mandibulotomy, complete excision of the tumor, partial glossectomy, floor of mouth resection, reconstruction with radial forearm free flap, and split thickness skin raft from the left lower thigh. He also discussed with us that they needed to get an updated CT scan of the neck to evaluate the current status of the tumor. 

September 26 - 28, 2018 were filled with back-to-back appointments for scans, ultrasounds, blood work, education and testing/study to better evaluate the situation.  

We met again with Dr. Janus and his team as our last appointment for the week on Friday, September 28th.  They explained that based on the additional information they gathered over the last couple of days, they did not think surgical resection would be beneficial for her.  It turns out that her main carotid is encased by the tumor. They felt that the risk to her carotid system and risk of stroke or long-term significant deficits would be too great. They were concerned of the significant perineural involvement of vagus, hypoglossal, facial, trigeminal nerves. Dr. Janus' final recommendation was to not proceed with the surgery and have further discussions with Radiation and Medical Oncology.

On October 2, 2018, we met with Dr. Ma and discussed how he will first need to assess the MRI scan scheduled to take place on October 3rd before scheduling her for a radiation treatment planning. The question of possible chemotherapy along with radiation therapy was also discussed, however because there are no firm prospective data supporting the use of chemotherapy in conjunction with radiation treatment, we elected not to proceed with the consultation with Medical Oncology. 

On October 3, 2018, Blia completed the MRI scan of the brain and neck.

On October 5, 2018, we met with Dr. Ma once more and went over the MRI scan confirming the tumor progressed through the base of the skull. We discussed the effects of radiation, particularly the risks associated with brain necrosis and possible optic nerve damage. The decision was made to proceed with treatment starting October, 15, 2018. 

Newest Update

Journal entry by Nicole Moua

This morning we had a consultation with Dr. Price from the head and neck medical oncology department. She shared with us that the lung biopsy confirmed the cancer in mom's lung is the same salivary cancer that was in her neck and head. 

Now that this salivary cancer has showed up in the lung, they do not consider it to be curable. The fact that it spread to a different organ in the body means that it is a more advance cancer. They do not have a treatment that will get rid of the cancer.

Because this cancer is slow growing, they expect mom to have a good qualify life for 'years' without any symptoms. 

One thing they know for sure is that this cancer does not respond well to standard chemo. So chemo is not recommended as the side effects of chemo would not be beneficial.

Surgery, radiation and immunotherapy treatment now is too early because they can't say for sure how many nodules are in her lung or if it would meet some of the qualification for immunotherapy treatment. 

The Dr gave us two recommendations:
1) For now, watch the cancer. Do another CT scan about 3 months from now to see if any of the spots are growing or new ones appearing. 

2) Targeted therapy. Send off some of the left over lung biopsy for a molecular analysis that could give us a hint for what might be on a molecular level, causing for the cancer to grow, and see if there are any treatment out there that may be beneficial. 

Bottom line, they can only help mom coexist with this cancer - they can't make my mom cancer free. 

We are saddened by the news, but hopeful & grateful that the Dr's are still able to help and that we're looking at 'years' of additional time with mom, and not just 'weeks' or 'months'.
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