2 thoughts on “My Tumors Were Not Benign: Inherited SDHB Mutation”

  1. Megan says:

    I also have SDHB. I am 36 years old and have had 3 different primary cancers all caused by this gene. First was papillary thyroid cancer , followed by bilateral clear cell renal carcinoma and a paraganglioma in my retroeritoneal cavity. 3 major surgeries later and I am now supposedly cancer free. It’s been a long and crazy journey. Love being told how I’m one in a million constantly.

  2. Belinda says:

    In 2013 I found a lump in my neck which turned out to be a CBT. I am having such a hard time finding a doctor who is knowledgeable about this. I have an sdhb mutation. The CBT was treated with radiation only in the fall of 2013. Now I am feeling terrible and my dopamine and norepinephrine levels are up. I am feeling sad, mad, tired, guilty and sick with worry about my kids and grandkids.

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