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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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I'd like to let you know about an upcoming event at Mayo Clinic on July 14: Leiomyosarcoma Patient Education Symposium 2018.
You can find out more about the event here: https://ce.mayo.edu/hematology-and-oncology/content/leiomyosarcoma-patient-education-symposium-2018#group-tabs-node-course-default1
I have had 12 surgeries for removal of my lipsarcoma since 1988. I have also had radiation and a cyroablation. I will be having a biopsy of what appears to a return again of my disease. I have also had lung cancer with removal via VATs. All but 3 surgeries have been at Rochester Mayo. The recent surgeries have been a concern because they are close to the bronchial plexus as demonstrated again on the most recent. Has anyone had multiple returns of lipo sarcoma like this after surgery and radiation?
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1 ReactionI was diagnosed with sarcomatiod urotheial carcinoma cancer in 2013. Now 4 1/2 years cancer free!
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4 ReactionsHi, I'm Kristen, 36, I was diagnosed with Ewing's sarcoma November 2017. My tumor had pressed against one of my ureters blocking the drainage from my kidney (causing pain similar to a kidney stone) and was very small when it was found. I've been through 7 rounds of chemo and have had surgery to remove the portion of the ureter that had the tumor. The tumor was unable to be seen on CT after just the 3rd round of chemo,, so things are going well. I'm being treated by the sarcoma group at Mayo in Rochester, MN. Each of my chemos requires a hospital stay of 3-6days which is hard on this mom of 4 (ages 11-20).
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2 ReactionsMy daughter was diagnosed with myofibroblastic sarcoma in 2006. Amputation at mayo. Have never met another patient with same cancer. Would love to connect with anyone who may have had same cancer.
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1 ReactionMy dad has been diagnosed with histiocytic sarcoma. Since the doctors say thay there have been only a few hubdred reported cases, the only option they have given is aggressive chemo. Has anyone else on this page had this type of cancer?
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1 ReactionI was diagnosed last year with a radiation induced pleomorphic sarcoma from breast cancer treatment 18 years prior. 2 biopsies and two surgical excisions were done. They removed 2 ribs, stage 2 with no treatment available. Just monitoring my lung with several 4mm and less nodules. Now I’ve been diagnosed with triple negative breast cancer in the same breast. I’m having bilateral mastectomy tomorrow then chemo in a few weeks. The oncologist is considering adding a drug to the chemo that has been shown to cover the sarcoma but only about 5% effectiveness. I have lots of decisions to make. I’m going to both Kellogg cancer center (with tumor board consult at Mayo) and now my breast surgery is at Northwestern downtown Chicago
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1 ReactionHello @damlady2,
Welcome to Connect. Thank you for sharing your history with liposarcoma. I'm tagging @udderplace, who also started this discussion to talk about chemo treatment with Gemzar:
–Liposarcoma: Starting treatment with Gemzar https://connect.mayoclinic.org/discussion/information-on-liposarcoma/
I'm also tagging @fredscape @godsgotthis @kathythornjohnson who also have a diagnosis of liposarcoma to join the conversation.
Last year, the U.S. Food and Drug Administration (FDA) approved two chemotherapy drugs known as "orphan drugs"to treat liposarcomas – eribulin mesylate (Halavan) trabectedin (Yondelis) https://www.medicalnewstoday.com/articles/318771.php
Orphan drugs are treatments for rare medical disorders that have less than 10,000 diagnosed cases a year; the two drugs are used
to treat liposarcomas that have spread or metastasized, or that cannot be surgically removed and have failed to respond to previous chemotherapy regimens. @damlady2, are you familiar with these treatments?
Welcome to Connect, @djj1954, and thanks for joining with such great news! We are so happy for you! Fellow member @biceto had posted some questions about sarcomatiod carcinoma in this discussion, too.
@djj1954, would you share a bit more about yourself? Was the carcinoma detected early? Did you undergo any chemotherapy or radiation?
Welcome @kristennursepatient. I'm sorry to hear about your diagnosis, and so glad you've joined Connect, and that things are going well. @suzanneb @zaruhi have also talked about Ewing's sarcoma, and I hope they return to share their insights with you.
As a mum of 3, I can only imagine how stressful it must be to leave and put everything on hold while you stay in the hospital. Do you have family or friends who help with the kids?