Sep 14, 2009 - 1:39 pm
I am now at 7 years past my "terminal diagnosis" of splenic angiosarcoma and have spent considerable time trying to find other survivors of this rare cancer. The last doctor I contacted said he didn't know of anyone who made it past 5 years survival. The prognosis is "always" considered terminal because the disease isn't usually located until the spleen has burst, spreading the cancerous nodes and tissues throughout the unsuspecting victim's body. Mine was miraculously discovered before my spleen had ruptured - a fact I believe to be the only reason I survived. My spleen was removed first because it had enlarged to the size of a football and had a small fissure leaking toxin into my body. The cancer diagnosis was made post-surgery when the Mayo Clinic (the third pathology lab to receive and examine my spleen) finally figured out what had caused the problem in the first place. I was immediately referred to an oncologist, underwent a PET Scan and was found to have two metastatic lymph nodes in the right side of my neck - proof that the cancer had "leaked" out and traveled. Most of my chemotherapy was administerd in-patient and I spent 6-7 days with 7 bags of chemo and other drugs dripping into my veins. My oncologist briefly tried out-patient chemo after he did some research on the drug Taxol and thought it might be helpful. Unfortunately I had a severe allergic reaction to the drug and almost died in the chemo room at his office. That episode has left me a Type II diabetic, living with progressive peripheral neuropathy in all my extremities (but especially my back, legs and feet), dependent on a cane for balance and a host of other difficulties - including the label of permanently disabled. I am glad to be alive, but frustrated in my inability to find anyone else who might have made it through this rare form of cancer. If any of you are or might know of any survivors of Splenic Angiosarcoma, please contact me as soon as you can. I would be forever grateful.