Are there any survivors of Splenic Angiosarcoma in the world?

saydesnana Member Posts: 3
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.


  • aprildungan
    aprildungan Member Posts: 1
    Know someone
    I think I may know someone who has recently received this diagnosis, and it sounds like case is very similar. They could really use some good news. Please reply back to me or email me at [email protected]
  • shickman
    shickman Member Posts: 3
    angiosarcoma of spleen
    I have just been diagnosed with spindle cell angiosarcoma of spleen. I would like very much to talk with you. Where are you located? I have not been able to find any other person with this disease.
  • shawnk_8
    shawnk_8 Member Posts: 1
    suspected angiosarcoma of spleen
    Hi, after a CT scan the radiologist suspects that my mass may be angiosarcoma of the spleen. I would be interested in hearing from anyone who has this diagnosis. This was found accidentally when I had a CT scan for other non-cancerous issue. I'm especially wondering if an early diagnosis and spleenectomy makes any difference in a prognosis.

    Thank you.