Blogs, or online journals, are a great way to connect with others who are affected. A pheo para diagnosis can be isolating, but subscribing to a blog can be comforting because it details an individual’s entire pheo para journey. If you would like your blog to be added to this list, please email us at firstname.lastname@example.org.
Welcome to the website of Ronny Allan who was diagnosed with incurable Metastatic Neuroendocrine Cancer in July 2010 after presenting with weight loss, symptoms of iron deficiency and facial flushing (Carcinoid Syndrome)
A first hand look at my fight & impact with metastatic pheochromocytoma cancer… meanwhile staying my fabulous self!
“This blog is in memory of my husband Scott Lewis, who passed away from metastatic paraganglioma in May 2022. It includes stories from Scott’s medical journey and my own grief journey since Scott’s passing. Scott made the world a better place through his love, friendship, and teaching, and this is my way of sharing stories of his life and processing my grief. Going forward, I would like to do whatever I can to help the pheo/para community with finding effective treatments and supporting patients and families.”
Sometimes, one of the biggest problems with a cancer diagnosis isn’t actually the cancer itself…..it’s the way it forces you to look at life, the thoughts it puts in your head, the conversations it forces you to have, the decisions it forces you to make.
In May 2011, I was diagnosed with an unusual cancer called “carcinoid tumor”. There is a primary tumor in my gut and six metastatic tumors in my liver. I had chemoembolization which stopped the tumor activity in my liver until January 2012. In 2013, half my liver was removed with a large tumor in it and my gall bladder was removed. My blog is centered around music and cancer.
I gave my son cancer. Not a lot of mothers can say that and I’m sure none would want to. I also advocated for him and ensured that his cancer was taken away before it could spread.
She is an author who has multiple paras and multiple families with tumors. She recently authored Running With Zebras about her and her family’s journey with the illness. “Blessed by inspirations of strength, I have been honored to fight alongside fellow zebras unafraid to run their race, and through the strength of Christ, I am learning to run my own. I pray that my story will help you as you walk through your own blazing furnace.”
Prequel to the blog but this time written by Mum. Same family, same gene, different stories. Have a read through our story of being diagnosed with rare tumours and the rarer gene that put them there!