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Diagnosed with sarcoma? Let's share
Sarcoma | Last Active: 3 hours ago | Replies (886)Comment receiving replies
Hi, I'm about 10 months out of going through radiation treatment for Kaposi Sarcoma not related to HIV or organ transplant. As I'm sure everyone here can agree the care, compassion and knowledge provided by Mayo Clinic is the best in the world! I was able to connect with Dr. Steven Robinson who is one of the few people who specializes in Kaposi Sarcoma. I'm aware that there is no cure and after treatment it could return in 2 months, 2 years or 20 years. I'm 43 years old and would like to connect with anyone who might be experiencing a situation with this cancer. Long shot I know because it's a rare one. Personally, I don't want to be this interesting haha. In conclusion I'm returning every 3 months to dermatology and oncology for monitoring. God bless everyone who is experiencing a similar situation and family and friends.
Replies to "Hi, I'm about 10 months out of going through radiation treatment for Kaposi Sarcoma not related..."
Hey @kevo02, welcome. You might also wish to join this discussion:
- Kaposi’s Sarcoma: Just want to talk https://connect.mayoclinic.org/discussion/kaposis-sarcoma/
It's great that you are getting care with the very special specialists at Mayo Clinic, especially for a rare cancer. Do you have to travel far for your 3 month follow-up appointments? How did you do with radiation? Any lingering side effects?
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I apologize in advance for not including this earlier as well. It took almost 2 years to finally get a diagnosis before coming to Mayo. I saw 5 different primary doctors, a podiatrist and 3 cardiovascular doctors. None had any idea what was going on. Since this can't be detected in blood tests it was finally a dermatologist at the VA who performed a punch biopsy who the diagnosis was confirmed. Also, saw oncology at 4 hospitals before Mayo and felt extremely uncomfortable with them. Praise Dr. Robinson M.B.B.S not only for knowledge but the best bedside manor I've ever seen!