Joseph was seen by the Cancer Geneticist and genetic counselor today. We had many questions answered and Joseph continues to stump some amazing medical minds. At this point, Joseph has not been diagnosed with tumors, but we were told that these can be difficult to diagnose unless they are specifically looked for through labs and CT or MRI scans. Joseph is at a 75% higher risk than the average person to develop paraganglioma or pheochromocytoma tumors. They tend to be benign, however, must be removed immediately because they can cause other medical issues and can become malignant. They should not be biopsied and can only be removed surgically. Signs and symptoms that we need to pay particular attention to for Joseph are headaches, leg cramps, racing heart, chest pains, unhealthy pallor, sweating for no reason, vomiting, fever, muscle weakness, high blood pressure, and increased anxiety. These tumors occur in the endocrine system, specifically the adrenal gland, gastrointestinal tract, kidneys, thyroid, thoracic cavity, and less frequently, head and neck. Additionally, Andrew also needs to be tested as this is inherited and he is at risk. Our future appointments are with gastroenterology (October 31) endocrinology (November 14), cancer genetics (October 31), and medical genetics (still waiting for an appt). Thank you all for your continued well wishes, thoughts, and prayers as we move ahead in this journey and look for answers. We are determined to educate ourselves and advocate for Joseph in any way we can and that would not be possible without your support!
Posted on: Wed, 22 Oct 2014 09:57:29 +0000
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