Shari, that's so great to hear that you are doing so well!!! Did you have genetic testing done? I am honestly too scalpel shy to get a surgical opinion. Right now it seems that radiation is going to be the best option. I've been told by many doctors now that surgical intervention is not an option and could be fatal given the vascular nature of the tumor location along with the nerve involvement. I'm gearing up for evaluation at the SCCA proton beam radiation therapy center in Seattle WA for evaluation with the founder of the center. It is the closest proton beam radiation center near to MT in a 6 state radius. A 7 to 8 hour drive from where I currently reside. The literature for paraganglioma treated with octreotide shows promising tumor size reduction by 3-11%. This paired with the proton radiation is the most recent treatment option that has been recommended. I will continue to see Dr Pacak and his team at the NIH every 3 to 6 months after my treatment start. I do feel I am in great hands there. Given that I am SDHB ( B for Bad) I am at high risk for secondary malignancy and will need continued supervision for the rest of my life. This is my new "normal". I am not going to say it has been an easy adjust especially because my husband and I were trying to have another child for 7 months before I found out. We have a 4 year old daughter who is the light of our lives. Her genetic testing is pending at the NIH as we did not know prior to having her. The sooner we know the better for disease monitoring and outcomes. The mutation is heterozygous and there is a 50% chance that she has the mutation. Most of my time has been spent researching, reading and deciding what my next move is going to be. I appreciate your feedback!
Best wishes,
Ristene