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Diagnosed with sarcoma? Let's share
Because sarcomas are rare, I would like to start a conversation to help connect people living with sarcoma or caring for someone with sarcoma.
As you know, sarcoma is the general term for a broad group of cancers that begin in the bones and in the connective or soft tissues (soft tissue sarcoma). There are many different types and sub-types of sarcomas, for example: angiosarcoma, chondrosarcoma, Ewing’s sarcoma, fibrosarcoma, gastrointestinal stromal tumor (GIST), Kaposi's sarcoma, leiomyosarcoma, liposarcoma, malignant peripheral nerve sheath tumor, osteosarcoma, pleomorphic sarcoma, rhabdomyosarcoma, synovial sarcoma and more.
Let's get to know one another. Why not start by introducing yourself? What type of sarcoma have you been diagnosed with?
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Sept 14th is my Four Quarter Amputation. Anticipated length of surgery is 16 hours. I will have many qualified surgeons. Prayers for my surgeons and for me are welcomed. It is a rare and complex surgery.
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2 ReactionsWelcome, Christine. You've got a lot going on with both your leiomyosarcoma and taking care of your dad. I'm tagging fellow members @kathythornjohnson @allsmiles @ventibug and @rred who have experience with leiomyosarcoma and will hopefully join the discussion.
But first to your questions. High intensity focused ultrasound (HIFU) is most commonly used in prostate cancer patients. HIFU is a cancer treatment that uses high-frequency sound waves. You have HIFU from a machine. The machine gives off the sound waves which deliver a strong beam to a specific part of a cancer. This heats and destroys the cancer cells. Clinical trials may be available for some soft tissue sarcomas.
To request a second opinion at Mayo Clinic, you can ask your doctor to submit a physician referral. But you can also self refer. It's easy to get started. By filling out the online form, you will be called back within 3-5 business days to arrange a time to talk with a scheduler. Go to this page to learn more and to see the online form: http://mayocl.in/1mtmR63
What treatments have you had since your diagnosis? Have you had a biopsy of the spot on the lung?
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3 ReactionsHello. I have been diagnosed with leiomyosarcoma last summer 2021 at Northwestern Memorial in Chicago.
I had a total hysterectomy. I am w the University of MN now after dealing w a mesothelioma expert while taking care of my Dad. Now last month found a spot in my lung. I'm currently being treated at the University of Minnesota but am not confident. I guess just confused. I want a second opinion. Do I need to ask the dr to refer me to Mayo and if so is there a dr that specializes in leiomyosarcoma? You all sound so brave. My brother says there is a treatment at mayo that called high intensity focused ultrasound (HIFU) that works on some cancers. Would this work on mine? I appreciate your time. Christine
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2 ReactionsMy husband had a sarcoma that we saw on his tongue and extended into his throat. We went to Dana Farber in Boston. They said it came from radiation that he had 9 years ago in his throat. The good news that I will share with you is now his sarcoma is gone. He was treated with radiation and Avelumab (Bavencio). He does now have other issues that he is dealing with. His E N T scopes him monthly to check his throat. He has been cancer free for over a year.
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2 ReactionsYa I’m worried this is just a temp fix. In the long run. This crap will win sooner or later. Ugh.
Barney, we have an extremely rare and dangerous disease. Mine is sarcoma of the soft tissue and first appeared on my back around the shoulder blade. I've had surgeries chemo, radiations. Keep asking your doctor. Why so many? Are there alternatives? (Fewer treatments?) It's a lot to take in especially at the beginning. Sorry I can't be of more help.
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1 ReactionHello I’m Barney
1 Aug 22 I was diagnosed with angiosarcoma in my neck. Iv head surgery to remove all the lymph nodes and any sign of a tumor from my neck. Still recovering from surgery. I have been told I need 30 rounds of proton therapy for my neck. But no chemo at this point. Now if the cancer is removed why would I need 30 rounds of proton. That seams a bit much. With this being such a rare cancer I can’t find a whole lot on it. Does anyone know where to find more info or can help me out. Thank you.
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1 ReactionYes times like these are very difficult. I have sarcoma diagnosed 2018 and have been in constant treatment. Find a supportive and loving friend! Hugs!
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3 ReactionsI was diagnosed with high grade de-differentiated liposarcoma in May 2017 in the upper right chest wall. Following 2 surgeries to both remove the mass and rebuild my chest I have been living cancer free for five years.
Last week a lump was identified on my right femur. I met with my surgeon and we have scheduled an MRI for next Monday.
I am a wreck.
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2 ReactionsNo we have not heard from Barnes yet. Eldon was supposed to have a PET scan yesterday, and they had to cancel due to his high sugar. He has 20% of his pancreas left, and as a result of that, is a type 1 diabetic. Luckily, we got another one scheduled on the 18th of July.