Diagnosed with sarcoma? Let's share

Posted by Colleen Young, Connect Director @colleenyoung, Jun 21, 2017

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.

kathyaz | @kathyaz | 13 hours ago

Hello all. I’m a member since Jan 2025. Been reading, but haven’t posted. Diagnosed with uLMS after total hysterectomy 12/31/24. Clear margins, stage 1b, high grade. Open surgery with Gyn Onc; now seeing sarcoma specialist at Mayo Clinic Phoenix. Scans have been clean so far, with next round this month. After absorbing so much info from others’ experience, I’ve learned it pays to stay informed, ask questions, and have a doctor you have faith in. We all will face different challenges. I already completed my first goal of attending my granddaughter’s wedding in Kentucky in June. She is a 16 yr cancer survivor. Thanks to all for sharing.

haunk57 | @haunk57 | 15 hours ago

I have Leiomyosarcoma. Started in my uterus & I had a hysterectomy in March 2024, first CAT scan in September 2024 was clear and 2nd CAT scan in May 2025 showed a tumor on my liver and tumors in my lungs. I have seen a Sarcoma specialist, Dr Samantha Armstrong at IU health in Indy. I need to get a whole body PET scan and then she's gonna start me on chemo: Doxorubicin & Dacorbazine.

jeshaw6801 | @jeshaw6801 | 19 hours ago

Did you go to Sloan Kettering. They are the best sarcoma hospital in ny

barndad59 | @barndad59 | 19 hours ago

Hi,
There are over 150 types of sarcomas, let pray its not malignant, else it will need to be removed with margin.
A biopsy could be done with a twilight drug, I have had a few biopsies. The one thing I can say radiation did not make a difference other than to change the DNA of the cells in the area, making my type of sarcoma worse.
I talked to two different NYC medical and they both say the same no known drug that they can say will kill it, stop the spread or growth. First is surgery to remove it.

smcc | @smcc | 22 hours ago

Hi,

How are you? I have a rather large sarcoma high up on my inner thigh. I have had an ultrasound and and Mri and im still waiting for a biopsy, 4 weeks now. I am in limbo and really dont know what to expect. Any knowledge would be helpful

Colleen Young, Connect Director | @colleenyoung | 1 day ago

In reply to @cynthia58 "Malignant sarcoma in my left hand between my 4th and 5th fingers grade 2" + (show)

Hi @cynthia58, is this a new diagnosis for you? I bet you have a lot of questions. How are you doing? What treatment is being suggested?

jeshaw6801 | @jeshaw6801 | Jun 26 9:39am

Run to the closest Sarcoma center to get it evaluated by a sarcoma doctor.
The first step is a good diagnosis
The type and location is critical to finding a plan forward.
The absolute best solution is surgery to remove the cancer but that is complicated by location.

ctflyr | @ctflyr | Jun 26 8:16am

In reply to @suzyqqq "My sister was just diagnosed with "soft tissue sarcoma" and I would be grateful if I..." + (show)

Hello.....it's best to know what type of sarcoma your Sister has
before attempting any informational research. There are a large number of different types of sarcoma and each have different treatment options. Without knowing more details of your Sister's sarcoma it would be a mistake to take a statement like "no treatments are available" as gospel. There are treatments available depending on a number of factors. If possible, find out some more details of your Sister's sarcoma before you dive into researching "soft tissue sarcoma". Because of the amount of information available from a wide variety of sources, it can quickly become overwhelming. Your journey with your Sister, and helping by gathering information and knowledge of her illness, will be an important part of her cancer care. It seems overwhelming, but knowledge is power. Wishing you and your Family well during this challenging, life altering time. ❤️

suzyqqq | @suzyqqq | Jun 25 5:15pm

My sister was just diagnosed with "soft tissue sarcoma" and I would be grateful if I can get any information on how this cancer is treated and benefits from treatment and is this cancer a non curable cancer. Also can you tell me what treatments are provided for this type of cancer since doctors told my sister there isn't any kind of treatments for this cancer. Our family is very concerned for our sister and hope and pray she will be able to get treatment for her her type of cancer. Thank you

jkrause3 | @jkrause3 | Jun 19 1:18pm

In reply to @dresikap "I am happy for you that you are recovering from the surgery. Thank you for sharing...." + (show)

Mayo does not require a referral from another Dr. - you just need to call them and request an appointment - My Dr. Was Dr. Goulding - She is one of the top surgeons for sarcoma surgery and see the post below - she saved my leg and also my ability to walk again
I won't sugarcoat the process but will tell you that the whole Cancer Board at Mayo worked to ensure my best outcome. I am walking unassisted at 7 weeks and a huge portion of my calf muscle was removed.
How do I get an appointment at the Mayo Clinic in Phoenix?
o reach the Arizona scheduling office, please call 480-301-8484 between 8 a.m. and 5 p.m. Mountain time, Monday through Friday, or contact us online.

My direct phone is 480-466-6668 is you have any questions I would be happy to help - I know this is a very scary time my name is Julie