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.

verena | @verena | Mar 14 8:54am

In reply to @amyb5 "Yes there are. It’s a scary road to be on. If you let them know, Aurora..." + (show)

Just to let you know I had surgery on Monday at St Luke’s and everyone there has been wonderful!

amyb5 | @amyb5 | Mar 14 9:04am

In reply to @verena "Just to let you know I had surgery on Monday at St Luke’s and everyone there..." + (show)

I’m so glad everything went well. My experience with them has been very positive. I don’t share your language challenges, but worked there years ago, & used the translators with many patients. My thoughts are with you.❤️

verena | @verena | Mar 14 9:40am

In reply to @amyb5 "I’m so glad everything went well. My experience with them has been very positive. I don’t..." + (show)

Although English is not my first language, I was actually referring to the lots of new medical terms I suddenly had to navigate. It felt like I was entering a foreign country. Thanks for helping others find a way.

amyb5 | @amyb5 | Mar 14 9:45am

In reply to @verena "Although English is not my first language, I was actually referring to the lots of new..." + (show)

I see. Sorry for the misunderstanding. My doctor is very receptive to questions. Is yours?

markgventnor | @markgventnor | Mar 17 9:03am

In reply to @greeneagle "I found a tumor in my left groin in 2009. I asked my physician if he..." + (show)

I am sorry and wish you the best. My synovial sarcoma has not returned, yet. But I am always waiting. I go for CAT scan every six months. I will be 82 in June. So I hope for the best and keep smiling. What else can we do?

I was diagnosed with the stomach cancer in 2019. I feel good, but have no appetite.

lhduvall | @lhduvall | Mar 23 2:33pm

In reply to @diane060 "Hello, I was diagnosed with endometrial carcinosarcoma with metastases to the cervix on May 17th. I..." + (show)

I had an aggressive lemon-sized (neuro?) fibrosarcoma of the abdomen in 1990, Stage IV, with very poor prognosis (nil). I was 33y with a toddler, living in upstate NY. The first surgery was not completed due to heavy blood loss. We moved in with my folks in CA, for childcare & proximity to treatment. I had 3 (7-8 day) courses of ifosfamide w/ mesna, then 5wks of radiation, followed by a successful (14 hr) surgery at UCLA. The tumor was a dead husk, and they were able to save all major organs. The sarcoma has not returned.
Best wishes for your chemo. Everyone’s reaction is different, some get the munchies, some can’t hold water down. Stick with the chemo, I think that’s what made the difference in surviving a ‘terminal’ diagnosis.
As for abdominal surgery recovery, it was about 2 yrs before I felt comfortable wearing pants with a waistband that zipped. Vitamin E cream and gentle scar massage has kept the scars smooth.

dhellberg | @dhellberg | Mar 24 7:47am

Hello - I am 60 yr old and was diagnosed with Undifferentiated Pleomorphic Sarcoma of my right posterior thigh. I was stage 3 at the time of discovery and my tumor was large >10cm. I underwent 5 weeks of radiation in hopes of shrinking my tumor before surgery however it did not shrink at all. I underwent surgery in April 2023 and have scans every 90 days. I recently had an MRI last week that shows red bone marrow conversion/reconversion and being I'm a non-smoker and recent bone pain, I have a PET scan scheduled this Wed. I stay positive and grateful every day and stay in faith. I send prayers and well wishes to all sarcoma survivors to. date. God bless - Donna

verena | @verena | Mar 24 9:15am

In reply to @dhellberg "Hello - I am 60 yr old and was diagnosed with Undifferentiated Pleomorphic Sarcoma of my..." + (show)

I had a 6 cm Myxosarcoma removed from my right thigh two weeks ago. I had 5 weeks of radiation prior to the surgery and my tumor did not shrink, either. I just made appointments for the first follow up CT and MRI in June. I wish you all the best!

dhellberg | @dhellberg | Mar 24 9:22am

In reply to @verena "I had a 6 cm Myxosarcoma removed from my right thigh two weeks ago. I had..." + (show)

I hope you are healing nicely. Because my surgeon had to clamp off my femoral artery, I had blood clot issues for a short time. I will keep you in my thoughts and hope your scans bring wonderful news!

jspr422 | @jspr422 | Mar 25 9:53am

Hello -- I was diagnosed with high-grade endometrial stromal sarcoma (stage 1B) in the fall of 2023. I had a total hysterectomy and no evidence of spread was found in the margins or abdomen. No chemo or radiation needed (for which I am very thankful). Yet because it is a highly recurrent cancer, I'm under surveillance with a CT scan every three months for the next two years, tapering off after that (which creates a huge amount of anxiety).

Question for the group -- for others in surveillance -- what advice have you been given about having surveillance at a high-volume sarcoma center such as the Mayo, MSK, MD Anderson, etc.? I've been told both "you absolutely must be at a sarcoma center" and "as long as the scans remain clear, you don't need to be at a sarcoma center." Curious about the experience of others.

Thank you for sharing!