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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.

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tim59 | @tim59 | Mar 26, 2024

Rhabdomyosarcoma I am 64 and in treatment for past year. Removed from arm and had 30 radiation treatments on arm and 25 on right armpit lymph node. Keytruda every 6 weeks and scan every 3 months. So far so good. Seem to be holding my own.

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Colleen Young, Connect Director | @colleenyoung | Mar 29, 2024
In reply to @lhduvall "I had an aggressive lemon-sized (neuro?) fibrosarcoma of the abdomen in 1990, Stage IV, with very..." + (show)
Profile picture for lhduvall @lhduvall

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.

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@lhduvall, I'm so glad you are here to tell your story. It's an amazing one. And that toddler is now an adult.

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Colleen Young, Connect Director | @colleenyoung | Mar 30, 2024
In reply to @jspr422 "Hello -- I was diagnosed with high-grade endometrial stromal sarcoma (stage 1B) in the fall of..." + (show)
Profile picture for jspr422 @jspr422

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!

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@jspr422, that is an excellent question regarding active surveillance of sarcoma. Would you mind starting a new discussion on the topic?

See how to start a new discussion here: https://connect.mayoclinic.org/help-center/

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Colleen Young, Connect Director | @colleenyoung | Mar 30, 2024
In reply to @tim59 "Rhabdomyosarcoma I am 64 and in treatment for past year. Removed from arm and had 30..." + (show)
Profile picture for tim59 @tim59

Rhabdomyosarcoma I am 64 and in treatment for past year. Removed from arm and had 30 radiation treatments on arm and 25 on right armpit lymph node. Keytruda every 6 weeks and scan every 3 months. So far so good. Seem to be holding my own.

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Welcome, @tim59. How are you doing on Keytruda? How many treatments have you had so far?

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helenjr | @helenjr | Apr 2, 2024

I have been diagnosed with fibromyxoidsarcoma - a mass which appeared on my forearm and looks like it has metastasized to the lungs. Anyone else out there with this or a similar diagnosis?

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Colleen Young, Connect Director | @colleenyoung | Apr 6, 2024
In reply to @helenjr "I have been diagnosed with fibromyxoidsarcoma - a mass which appeared on my forearm and looks..." + (show)
Profile picture for helenjr @helenjr

I have been diagnosed with fibromyxoidsarcoma - a mass which appeared on my forearm and looks like it has metastasized to the lungs. Anyone else out there with this or a similar diagnosis?

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Welcome @helenjr, members @alias47 @eokwuns have experience with fibromyxoid sarcoma.

Helen, this must've come as a blow to find out not only that you had sarcoma but that it had metastasized. Will you have or have you had surgery? What treatment is suggested for the metastasis?

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helenjr | @helenjr | Apr 7, 2024
In reply to @colleenyoung "Welcome @helenjr, members @alias47 @eokwuns have experience with fibromyxoid sarcoma. Helen, this must've come as a..." + (show)
Profile picture for Colleen Young, Connect Director @colleenyoung

Welcome @helenjr, members @alias47 @eokwuns have experience with fibromyxoid sarcoma.

Helen, this must've come as a blow to find out not only that you had sarcoma but that it had metastasized. Will you have or have you had surgery? What treatment is suggested for the metastasis?

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Actually, it turns out not to have metastasized at all! It’s a complicated story, but the tumor they found in my lungs is not the same cancer as the sarcoma and apparently treatable. It’s been a rollercoaster ride for sure. Thanks for your kind response. BTW, I will be treated with radiation for the tumor on my arm.

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verena | @verena | Apr 8, 2024

Helenjr,

Glad to hear that you have gotten more clarity! I had a 6 cm fibromyxoid sarcoma in my leg. I was treated with 5 weeks of radiation and then surgery 4 weeks ago. I am doing okay. Best wishes to you.

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ericschisler | @ericschisler | Apr 9, 2024

Hi. I was diagnosed with soft tissue scarcoma in the left atrium. Primary heart tumor UPS. Very rare. I am told only 100 cases occur each year, Started Immutherapy. May be doing shortly Proton therapy. Looking for advice. Thanks

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Lynne Marie | @lbrockme | Apr 9, 2024

I am so sorry you are having to face this. Proton therapy is very targeted and they have come a long way in treatments for most cancers over the last decade. I do know proton therapy can make you very fatigued, so prepare for that. Having someone to drive you to and from appts is helpful.
I found it helpful to have a list of my questions written down to take into my oncologist. Consider a second opinion from someone who has experience with this cancer if possible, or a large cancer center, Mayo etc.
Ask questions like
Length of treatment, Recovery time, food restrictions and Special accommodations required, how to build up immune system etc
Wishing you the best!

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