It all started in late July 2017 when José Luis began to feel a discomfort in his groin. After seeing his family doctor, he was sent for a CT scan. The CT scan revealed a 6.1 x 4.7 x 5.5cm mass in his groin. José Luis had surgery on September 12 to remove the mass, which was sent to pathology. On September 19, José Luis was told that the mass was confirmed as a soft tissue sarcoma. He needed follow up treatment, but a category five hurricane was approaching the island. There was nothing that could be done until the hurricane had passed.
On September 20, Puerto Rico was devastated by Hurricane María. The western side of the island where José Luis lives was hit particularly badly – roads became impassable, there was no electricity and no communications system.
It was not until October 2, that José Luis was able to meet with his oncologist in Mayagüez. He then learned he had a high-grade, pleomorphic undifferentiated sarcoma which had been located in the soft tissue of his groin. His oncologist explained there were no oncologists who specialize in this type of cancer in Puerto Rico. Worse still, the form of sarcoma he had been diagnosed with is very aggressive and often metastasizes to the lung. He urgently needed a PET-CT scan to know whether the cancer had spread to other organs in his body and without the PET-CT scan he could not start treatment.
With no electricity, communications, access to medical services or the drugs needed to perform diagnostic tests, José Luis and his family knew that he was unlikely to receive the PET-CT scan and treatment he desperately needed.
This is where your donation helped José Luis. The Artz Cure Sarcoma Foundation learned of this case, was able to step in, arrange for José Luis to receive treatment at the MD Anderson Cancer Center in Houston, get him and his wife onto a humanitarian flight from Mayagüez to Houston and provide housing for him and his wife in Houston through another foundation with whom Artz Cure Sarcoma collaborates - A Shelter for Cancer Families. Throughout, Zulema acted as his patient advocate – she was patched in on all the doctor consultations, helped steer José Luis through the treatment options, and assisted in understanding the disease itself, what was covered under his medical insurance and negotiated on his behalf a payment arrangement with the hospital.
After being evaluated at M.D. Anderson by Dr. Cormier, it was determined that not all of the sarcoma had been removed during the initial surgery – a 3cm tumor remained in an area difficult to remove with further surgery. The good news is that an MRI and a CT scan of his abdomen and pelvis did not reveal any metastasis of the disease. José Luis is now undergoing several rounds of chemotherapy treatment to kill any microscopic cancer cells in the blood preventing spread of the disease and to shrink the tumor down to a size at which surgical removal is possible. Jose Luis, his wife, Sylvette and young son, have fully relocated to Houston.
Without your donation, José Luis would not have had access the medical care he now receives and the chance of recovering from his sarcoma diagnosis. Additionally, it allows Zulema Arroyo Farley, a defender of patients rights, to be personally involved, every step of the way advising families facing a diagnosis of sarcoma.
Jose luis aguilar at his first md anderson cancer center appointment
jose luis and his wife sylvette ruiz on thanksgiving day at their houston apartment thanks to a shelter for cancer families foundation