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 | Jan 12 8:17pm

In reply to @ss3336 "What's the fastest way to get treated by him?" + (show)

@ss3336, you can request an appointment following the guidance on this page: http://mayocl.in/1mtmR63

Colleen Young, Connect Director | @colleenyoung | Jan 14 7:08pm

In reply to @elainebr "I was diagnosed with adrenal leiomyosarcoma in December 2023. Frequent scans have revealed multiple lung nodules...." + (show)

@elainebr, how are you doing? Did further investigation confirm or rule out lung metastasis?

elainebr | @elainebr | Jan 14 7:15pm

In reply to @colleenyoung "@elainebr, how are you doing? Did further investigation confirm or rule out lung metastasis?" + (show)

Unfortunately it is metastatic spread of adrenal leiomyosarcoma to my lungs. I head back to consult with my oncologist on the 23rd. Luckily I have no symptoms right now.

janiemae | @janiemae | Feb 4 10:15am

My husband was diagnosed with undifferentiated pleomorphic sarcoma of the right bicep muscle on Thursday, which has grown really fast. He is scheduled for a radiation consult at Mayo on Friday. Needless to say, my life is a whirlwind. I feel like the rug has been pulled out from under me.

sammyjoe305 | @sammyjoe305 | Feb 4 1:24pm

I have been diagnosed with high grade spindle cell sarcoma in my right hip. Just had my first immunotherapy infusion and will be starting radiation in a few weeks. After that, surgery. I am 73 years old and gave been healthy all of my life. I am having a hard time wrapping my head around all of this. When I see all of the younger people that have sarcomas my heart really hurts for them. I am scared and confused right now. God bless you all.

janiemae | @janiemae | Feb 5 1:04pm

My name is Janie. I am 71 years old, mother of 5, and 5 bonus children, grandma to 7 girls and 5 boys, great grandma to 2 boys and 1 girl. I live in northern Minnesota with my husband, who was just diagnosed with undifferentiated pleomorphic sarcoma (UPS) last week. We had our first visit to Mayo in Rochester, MN on January 27th, for consult, CT of chest, and biopsies. Friday we have three more appointments with radiation oncology for consult, stimulation therapy, and MR of right humerus. There are so many unknowns in our life right now and it’s hard to process. I saw the words American Cancer Society and burst into tears. It seems like everything is so uncertain right now. How do you convert from wife to 24/7 caregiver to someone with cancer?

cassielee | @cassielee | Feb 5 10:27pm

In June 2024, my mom who is now 66yo was diagnosed with Dedifferentiated Liposarcoma (DDLPS). Within a month she underwent a very invasive surgery to remove the large tumour along with her right kidney, large chunk of her liver and part of her diaphragm.
Fast forward 6 months, feeling a bit winded and weak still she just had her first post op routine CT scan and it has metastasized to her lungs and is stage 3/3.
Shocked is an understatement as how quickly it grew back to a new area of her body. Awaiting to hear from medical oncologist for treatment options for this aggressive very very rare cancer.
Looking into second opinion mayo clinic if there’s a chance.

kevo02 | @kevo02 | Feb 6 12:21am

In reply to @colleenyoung "Hi @me67 @udderplace @brinys @deborahe @jeffk @Laydeewinx @sheila2005 @funkynotes @zshivaughn @jacobito @swstar, I'd like to invite..." + (show)

Hi, I'm about 10 months out of going through radiation treatment for Kaposi Sarcoma not related to HIV or organ transplant. As I'm sure everyone here can agree the care, compassion and knowledge provided by Mayo Clinic is the best in the world! I was able to connect with Dr. Steven Robinson who is one of the few people who specializes in Kaposi Sarcoma. I'm aware that there is no cure and after treatment it could return in 2 months, 2 years or 20 years. I'm 43 years old and would like to connect with anyone who might be experiencing a situation with this cancer. Long shot I know because it's a rare one. Personally, I don't want to be this interesting haha. In conclusion I'm returning every 3 months to dermatology and oncology for monitoring. God bless everyone who is experiencing a similar situation and family and friends.

kevo02 | @kevo02 | Feb 6 12:40am

In reply to @kevo02 "Hi, I'm about 10 months out of going through radiation treatment for Kaposi Sarcoma not related..." + (show)

I apologize in advance for not including this earlier as well. It took almost 2 years to finally get a diagnosis before coming to Mayo. I saw 5 different primary doctors, a podiatrist and 3 cardiovascular doctors. None had any idea what was going on. Since this can't be detected in blood tests it was finally a dermatologist at the VA who performed a punch biopsy who the diagnosis was confirmed. Also, saw oncology at 4 hospitals before Mayo and felt extremely uncomfortable with them. Praise Dr. Robinson M.B.B.S not only for knowledge but the best bedside manor I've ever seen!

kevo02 | @kevo02 | Feb 6 1:05am

In reply to @kathythornjohnson "What I've learned during the last 6 years:*The actuality of my situation is rarely as awful..." + (show)

I completely agree, whether you saw my post or not is irrelevant. I've got Kaposi Sarcoma which is most commonly associated with organ transplant recipients or HIV. Neither applies to me. My VA doctor who saw many people with HIV in the 90's has never come across this or ever considered it a possibility.