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webinar series – episode 21

Special thanks to Progenics for making this webinar series possible.

The information presented on this webinar is for educational purposes only and should not substitute the advice of your doctor(s) and medical team because they have in-depth knowledge of your medical history and current situation.

View Dr. Kebebew’s slides here. 

Questions & timing are below:

Q1 at 33:33: I have heard biopsy is not recommended if pheo para is suspected. Is this true?
Q2 at 35:14: Diagnosed with 5cm undiagnosed mass diagnosed with incidental PET scan and subsequent biopsy. What are next steps for this patient? Biochemical testing? Genetic testing?
Q3 at 38:00: Do you have a preference for alpha blockers?
Q4 at 39:09: Tumor was found on adrenal gland, but testing showed that it wasn’t secreting, but patient is still symptomatic. What should be done in this case?
Q5 at 40:55: I have a carotid body para and my cranial nerves are wrapped around it. I ended up going through radiation because my case was deemed inoperable. Can my tumor be safely removed?

Special Q&A Session
Questions & timing are below:

Q1 at 00:39: Our daughter has an SDHB mutation tumor in her carotid artery (R), and when that was found a parotid gland tumor was also found next to it. In a year the carotid tumor has grown from 12 to 14. Is either necessary to remove….any chance that they are connected….and if removed, what are expected aftereffects? Also best doctor to do surgery …. she lives in Brooklyn, NY.
Q2 at 04:22: It’s my understanding that once you do surgery on an organ (liver), it is very hard to do again. Are there any other options for cancer that has spread?
Q3 at 08:59: What is the percentage of recurrence based on demographics, race and gender specifically for a bladder para?
Q4 at 10:54: Adrenal medullary hyperplasia can be a precursor to pheo. Can you please comment on treatment of AMH if someone has been diagnosed with unilateral AMH with no known mutations, evidenced by intense focal uptake on MIBG scan, slightly enlarged adrenal, elevated mets, signs and symptoms consistent with pheo. What course of treatment do you recommend?
Q5 at 12:56: How can I manage symptoms (catecholamines) without opting for surgery?
Q6 at 14:17″ I have a rare para (3/4 cm) in the diaphragm retro peritoeneal region attached to the aorta. Is the only way to access this by opening up the full body and deflating the lung etc to access?
Q7 at 16:00: My daughter, age 22, has MEN2A. She had one adrenal gland removed when she was 9, due to a 6 cm pheo. She now has a 2 cm pheo, and PET DOTATATE shows metastases in aortocaval lymph node and lungs. What are your recommendations for treatment?
Q8 at 22:05: Do you do Telehealth appointments?