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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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Ya I’m worried this is just a temp fix. In the long run. This crap will win sooner or later. Ugh.
My 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 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 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 ReactionsSept 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 ReactionsThank you @colleenyoung I have requested an appt. I have my pre-op tomorrow at the University but am hoping to get my treatment moved to Mayo! I have been going for CT scans every 3 months since my hysterectomy and was clear up until July 2022. I then had another CT scan 26 August and the spot has grown. I am meeting with the Surgeon tomorrow to see what my options are - I will update you after my appt. I appreciate all of the support and say my prayers for all of those that are in need. Enjoy the day. Christine.
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1 Reaction@damlady2, just a quick note to let you know that I've been thinking of you. I hope the forequarter (interscapulothoracic) amputation went well and that it wasn't any longer than 16 hours. It is such a complex surgery.
It's been only 10 days since your surgery, so I doubt that you are able to write. But perhaps you have voice to text abilities on your phone or computer. I'd love to hear from you. If you're not able, just know I'm wishing you a good recovery.
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1 ReactionI can write that the surgery went well- only 10 hours. I am in rehab at Genoese 4 now and am growling stronger every day. I am walking without a cane in PT an working on balance. I feel comfort from my phantom arm but sometimes it does hurt. The therapy here is the best.
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1 ReactionDid the surgery in 10 hours. I am in Rehab now and am walking without a cane. In OT I filed my left nail yesterday. The plan is to return to independent living by Oct 5. My phantom arm gives comfort most of the time. Thanks for asking.
Dlady, I'm just seeing this now. So great to hear that rehab is going well. I agree that the rehab people on Generose 4 on Saint Marys Campus are fantastic. Did they offer any guidance on dealing with phantom pain?