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?
Interested in more discussions like this? Go to the Sarcoma Support Group.
@kathythornjohnson, Good Monday Morning. Thank-you for sharing your words of encouragement and wisdom. I am visiting you from the Transplant discussion group, to say that your beautiful statement is a testimony of hope for all of us.
Blessings to you as you continue your health journey'
Rosemary
@kathythornjohnson What a wonderful reply to my asking you for some words of encouragement/advice to others dealing with sarcoma. You have covered many of the situations that we all encounter when we deal with a chronic illness, but especially those with sarcoma. Thanks so much! Teresa
What I've learned during the last 6 years:*The actuality of my situation is rarely as awful as my imagination.*There is always reason for hope. What you hope for may change but there is always hope.*Dont believe everything you read on the Internet about your prognosis. Often, what you read on the Internet is best case or worst-case. We are rarely best case or worst-case. *When your situation is hardest remember that you can get through the next 60 seconds. Break it down as much as you need to. *If you are working with Mayo Clinic, you have world renowned doctors who see Sarcoma daily in your corner. Make certain you are at a sarcoma center. A regular oncologist may only see one or two sarcomas in their career. *Don't ignore your mental health. Ask for help getting through treatment and the fear following treatment. There are options.
Hi Carolyn @cvandyke, welcome to Connect. I'd like to introduce you to @diane060 who also has metastatic endometrial (uterine) carcinosarcoma. While it would appear that your diagnoses differ, I thought you'd like to meet each other.
@kathythornjohnson I'm so pleased that you have such a good support network, that does mean everything. As we all learn from each other on Mayo Connect, what sort of encouragement or advice would you offer others with this type of diagnosis? Teresa
I have regular follow ups and scans every 3-4 months. I went on an anti anxiety drug this year. That helped. I'm stuck with Mayo as they have been awesome. I'm feeling hopeful. My doctors have me convinced that I need to look at my disease as a chronic condition. I stay on top of it. I have a wonderful support group of family, friends, and coworkers. I don't know how people without support survive this.
Not sure if you are talking to me or not. But I had radiation for 5 weeks. They should be able to know how many weeks tp give you and the dosage. Good luck. Think positive and email friends. They can be a big help to keep your spirits up. I even wrote letters to my best friends and family telling them how much I appreciated them, etc. It was very therapeutic
Have you gone online and done some research? I would definitely let Mayo take care of you. They are the best.
That's what I have, only diagnosed 6ish weeks ago, waiting on a surgery date. Mine is very large, 6" x 4" how did your treatment go? was it just surgery or radiation as well?
I was diagnosed two years ago with Dermafibroprotuberans Sarcoma (dfsp) and honestly, I can't even spell it correctly! It's so rare that I can't even find a doctor who knows much about it. The best thing about it is being called a "unicorn."