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.

ronnie79 | @ronnie79 | 2 days ago

Solitary Fibrous tumor sarcoma on my head. Diagnosed 11/2018

sdsu | @sdsu | 4 days ago

In reply to @alias47 "Anyone been diagnosed with "Low Grade Fibromyxoid Sarcoma"?" + (show)

Yes, my husband. Stage 4 low grade fibromyxoid sarcoma is in his lungs.
He is now undergoing regular CT scans every 3 months to determine progression of disease and next steps.

muenchen1945 | @muenchen1945 | Jul 9 11:00am

In reply to @colleenyoung "@laurenmca3, chemotherapy can play havoc on the heart. Have you heard of cardio-oncology? Cardio-oncology offers expertise..." + (show)

The infusion alone worked well - I had energy, stamina and felt st times almost normal. As soon as I had to add the oral meds I started feeling sick, no energy, dizzy, balance issues, lost a lot of weight in one week - informed my team and will take myself off the oral meds.

laurenmca3 | @laurenmca3 | Jul 8 8:38pm

In reply to @colleenyoung "@laurenmca3, chemotherapy can play havoc on the heart. Have you heard of cardio-oncology? Cardio-oncology offers expertise..." + (show)

Yes, I have a team including an oncologist, cardiologist, specialist in cardiology, palatine care, gastroenterologist, and now a kidney specialist since my kidneys are not in great shape due to heart meds. I receive immunotherapy (Keytruda) via port every six weeks

laurenmca3 | @laurenmca3 | Jul 8 8:34pm

In reply to @colleenyoung "@mcwjr189, do you know the name of the targeted therapy that you're on?" + (show)

Keytruda… every six weeks

Colleen Young, Connect Director | @colleenyoung | Jul 8 8:09pm

In reply to @laurenmca3 "Hello, I was diagnosed with an undifferentiated pleomorphic sarcoma of the heart. I had surgery to..." + (show)

@laurenmca3, chemotherapy can play havoc on the heart. Have you heard of cardio-oncology?

Cardio-oncology offers expertise in addressing heart problems, potential or current issues during cancer treatments. At Mayo Clinic for example, the Cardio-Oncology Clinic (https://www.mayoclinic.org/departments-centers/cardio-oncology-clinic/overview/ovc-20442193) evaluates people prior to cancer treatment and patients who have experienced side effects due their treatment.

Do you have both cancer specialist and cariologists involved in your care? How are you doing on immunotherapy?

mcwjr189 | @mcwjr189 | Jul 3 12:12pm

In reply to @colleenyoung "@mcwjr189, do you know the name of the targeted therapy that you're on?" + (show)

I haven’t started yet, waiting till my next scan on 9/24. The oncologist wants me to take Avastin and Temodar 150gm/m2

Colleen Young, Connect Director | @colleenyoung | Jul 3 11:42am

In reply to @mcwjr189 "Hi, I was diagnosed with hyper cellular carcinoma in my liver in Sept of 2021. After..." + (show)

@mcwjr189, do you know the name of the targeted therapy that you're on?

laurenmca3 | @laurenmca3 | Jul 1 5:45pm

Hello,

I was diagnosed with an undifferentiated pleomorphic sarcoma of the heart. I had surgery to remove tumor followed by chemotherapy, however could not finish due to heart complications. I am still on immunotherapy, and am over 2 years post surgery… not sure what comes next…

Colleen Young, Connect Director | @colleenyoung | Jul 1 2:30pm

In reply to @paulaquintana "Hi! Newly diagnosed and scared to death. Noticed two mole like growths in pubic area saw..." + (show)

@paulaquintana, I can imagine you're scared. Thank goodness your inner voice told you to be diligent and continue to get checked. As you learn more about what you're dealing with, please post an update so I can connect you with other people with a similar diagnosis. All the best with the biopsy this week.

Is it suspected that you have sarcoma in the dermal layer or carcinoma?