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.

Colleen Young, Connect Director | @colleenyoung | Jun 5 8:13pm

In reply to @ninaricci "I was diagnosed with MPNST. Has anyone the same diagnose?" + (show)

@ninaricci, welcome. Please see this related discussion:

- Malignant Peripheral Nerve Sheath Tumor https://connect.mayoclinic.org/discussion/malignant-peripheral-nerve-sheath-tumor/

kenc | @kenc | Jun 2 5:49pm

In reply to @adi21 "Good morning Can you give me more details? When did the disease start and what treatment..." + (show)

Not clear when it started. It took several months before the medical profession settled on the finding that the large lump I had was sarcoma cancer. The treatment was radiation and surgery. They since have discovered a very tiny tumor, which will be treated by chemo at first, then perhaps radiation, then perhaps surgery and immunotherapy.

adi21 | @adi21 | Jun 1 11:22pm

In reply to @kenc "Suggest you ask these question with your oncologist. For me, the original treatment was radiation, followed..." + (show)

Good morning
Can you give me more details?
When did the disease start and what treatment did you receive?
For me, did it start after the third dose of the Pfizer vaccine for covid 19, by chance or not?
I talked to an oncologist surgeon in Italy but I want to learn more about this disease.

michdawson | @michdawson | May 31 7:07pm

In reply to @oldsailor71 "I had chondrosarcoma in 2002 for two weeks. A lump on my sternum was growing, lump..." + (show)

I had a similar situation recently. How are you now more than a year later?

chuckeg | @chuckeg | May 30 2:30pm

In reply to @colleenyoung "Hi @chuckeg, I appreciate the details. So you've started treatment now. Was your first appointment last..." + (show)

Hi Colleen,

This is an update. Finished radiation 5 weeks ago. Unfortunately I acquired a blood infection shortly after. Spent a full week in the hospital identifying the infection (bacteria). Eventually getting a Picc line with 2 antibiotics. Got one clear/ clean blood test resulting in being released to home health care, antibiotics 24hours/day for a month. The urgency had 2 reasons, getting ready for a June 17 surgery and stopping this infection from spreading and getting worse. Weekly blood tests were taken at home with improvement showing in basic metabolic panels. Secondly, pain medications have been effective, enough to modify its use by taking Oxy (twice a day, 5 Mg.) and Tylenol (3000 mg) per 24 hours. I've had PT and OT during this time, to get me stronger prior to surgery. I hope to have more after surgery. My pain level in my left leg has also been reduced. The numbness has now spread to my left foot (from my hip). My left leg is restricting movement and balance. My PT has really helped. I have fallen 3 more times in the past 10 days, with a walker (for a total of 12 times since Jan.). Lucky that I have not hurt myself. I'm impatient with my movements (guy thing?). Anyway I'll keep my story on this blog going after surgery.

kenc | @kenc | May 30 2:10pm

In reply to @adi21 "Hello My name is Adi, I am from Europe and I have been diagnosed with Classic..." + (show)

Suggest you ask these question with your oncologist. For me, the original treatment was radiation, followed by surgery. The tumor has appeared again and now the treatment is chemo therapy, with perhaps more radiation, surgery, and immunotherapy. There are number of variations on these therapies, this is why I recommend you obtain the information from you oncologist.

adi21 | @adi21 | May 30 1:56am

Hello
My name is Adi, I am from Europe and I have been diagnosed with Classic Kaposi Sarcoma, HIV negative. I would like to know more about the onset, evolution and treatment of these rare diseases.
Thank you

kenc | @kenc | May 24 12:00pm

In reply to @elmarie "My daughter, 24, has/had chondrosarcoma. It started as chondritis in her left knee and evolved to..." + (show)

Have discussion w/ the oncologist to fully understand the ramifications of the type tumor you daughter has.

kenc | @kenc | May 24 11:59am

In reply to @quichewithmayo "May 2025 I've been "lurking" here trying to figure out what I can contribute. I was..." + (show)

Believe the Sarcoma that appeared in me was induced the same way...to much radiation, but now takes more radiation to shrink the tumor.

quichewithmayo | @quichewithmayo | May 23 4:58pm

May 2025 I've been "lurking" here trying to figure out what I can contribute. I was diagnosed with an undifferentiated pleomorphic sarcoma (UPS) Sept 2024. I have my primary care at UCSF. I encourage everyone with a sarcoma to go to a specialty facility. I've been fortunate enough to have RT (Radiation Therapy) locally, as well as local physical therapy. I suppose I can answer some basic Qs, but I hope you have an open relationship with your oncologist.
My Sarcoma was radiation induced from a previous radiation cancer treatment in 2005. (Breast XCR). Good luck and Good Vibes to everyone. I happen to be a Christian, so God bless anyone that is dealing with xcr.