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Moderator

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 Cancer Support Group.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 22, 2018
In reply to @capricorne1 "After one ultrasound and scan that were negatives. After severals stools and urine analysis that were..." + (show)
@capricorne1

After one ultrasound and scan that were negatives.
After severals stools and urine analysis that were also negative.
I decided to seek assistance from my surgeon who operated on me last year for an inguinal hernia last year regardings my symptoms, he ask
me to retrieved my scan from the hospital for review with another radiologist, upon review and my symptoms the verdict last week was:
Liposarcoma.
He call a oncologist who his a sumnity in cancer who requested another scan from his location which was done last week and I will meet him
next week.
During 3 months I also visited my family physician who based on those verdicts that I was suffering from anxiety and he prescribed me
some cipralex.
I have an appointment with the oncologist next week.
Question:
Can a liposarcoma be non cancerigen and be a simple mass that can be exrtracted ?
I have abdominal pain,difficulty breathing even sitting and constipation.
Maybe I am wishfull thinking but, glad to see the lights after all those months.
Taking this one day at a time with supports from my family’s.
Claude Turcotte.
Carpe Diem.

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@marylou705 Good to hear from you! Teresa

REPLY
Kathy | @kathythornjohnson | Jun 23, 2018
In reply to @damlady2 "I have had 12 surgeries for removal of my lipsarcoma since 1988. I have also had..." + (show)
@damlady2

I have had 12 surgeries for removal of my lipsarcoma since 1988. I have also had radiation and a cyroablation. I will be having a biopsy of what appears to a return again of my disease. I have also had lung cancer with removal via VATs. All but 3 surgeries have been at Rochester Mayo. The recent surgeries have been a concern because they are close to the bronchial plexus as demonstrated again on the most recent. Has anyone had multiple returns of lipo sarcoma like this after surgery and radiation?

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I've had 6 recurrences since 2011. I have myxoid liposarcoma with rc. I've done 3 kinds of chemos, radiation, and cryoablation. I think it's pretty common for my subtype to recur.

REPLY
Kathy | @kathythornjohnson | Jun 23, 2018
In reply to @colleenyoung "I'd like to let you know about an upcoming event at Mayo Clinic on July 14:..." + (show)
@colleenyoung

I'd like to let you know about an upcoming event at Mayo Clinic on July 14: Leiomyosarcoma Patient Education Symposium 2018.
You can find out more about the event here: https://ce.mayo.edu/hematology-and-oncology/content/leiomyosarcoma-patient-education-symposium-2018#group-tabs-node-course-default1

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Will there be discussion on other sarcomas or will the focus be on the sarcoma featured?

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 25, 2018
In reply to @colleenyoung "I'd like to let you know about an upcoming event at Mayo Clinic on July 14:..." + (show)
@colleenyoung

I'd like to let you know about an upcoming event at Mayo Clinic on July 14: Leiomyosarcoma Patient Education Symposium 2018.
You can find out more about the event here: https://ce.mayo.edu/hematology-and-oncology/content/leiomyosarcoma-patient-education-symposium-2018#group-tabs-node-course-default1

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Hi Kathy,
I've just emailed your question to the organizers of the symposium. I hope to have an answer today or tomorrow.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 25, 2018
In reply to @colleenyoung "I'd like to let you know about an upcoming event at Mayo Clinic on July 14:..." + (show)
@colleenyoung

I'd like to let you know about an upcoming event at Mayo Clinic on July 14: Leiomyosarcoma Patient Education Symposium 2018.
You can find out more about the event here: https://ce.mayo.edu/hematology-and-oncology/content/leiomyosarcoma-patient-education-symposium-2018#group-tabs-node-course-default1

Jump to this post

Wow, @kathythornjohnson I heard back already. The symposium does focus on leiomyosarcoma specifically. You can see the program details here: https://ce.mayo.edu/hematology-and-oncology/content/leiomyosarcoma-patient-education-symposium-2018#group-tabs-node-course-default2

REPLY
capricorne1 | @capricorne1 | Jun 25, 2018
In reply to @capricorne1 "After one ultrasound and scan that were negatives. After severals stools and urine analysis that were..." + (show)
@capricorne1

After one ultrasound and scan that were negatives.
After severals stools and urine analysis that were also negative.
I decided to seek assistance from my surgeon who operated on me last year for an inguinal hernia last year regardings my symptoms, he ask
me to retrieved my scan from the hospital for review with another radiologist, upon review and my symptoms the verdict last week was:
Liposarcoma.
He call a oncologist who his a sumnity in cancer who requested another scan from his location which was done last week and I will meet him
next week.
During 3 months I also visited my family physician who based on those verdicts that I was suffering from anxiety and he prescribed me
some cipralex.
I have an appointment with the oncologist next week.
Question:
Can a liposarcoma be non cancerigen and be a simple mass that can be exrtracted ?
I have abdominal pain,difficulty breathing even sitting and constipation.
Maybe I am wishfull thinking but, glad to see the lights after all those months.
Taking this one day at a time with supports from my family’s.
Claude Turcotte.
Carpe Diem.

Jump to this post

Sorry he could NOT confirmed a Liposarcoma.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 3, 2018
In reply to @capricorne1 "After one ultrasound and scan that were negatives. After severals stools and urine analysis that were..." + (show)
@capricorne1

After one ultrasound and scan that were negatives.
After severals stools and urine analysis that were also negative.
I decided to seek assistance from my surgeon who operated on me last year for an inguinal hernia last year regardings my symptoms, he ask
me to retrieved my scan from the hospital for review with another radiologist, upon review and my symptoms the verdict last week was:
Liposarcoma.
He call a oncologist who his a sumnity in cancer who requested another scan from his location which was done last week and I will meet him
next week.
During 3 months I also visited my family physician who based on those verdicts that I was suffering from anxiety and he prescribed me
some cipralex.
I have an appointment with the oncologist next week.
Question:
Can a liposarcoma be non cancerigen and be a simple mass that can be exrtracted ?
I have abdominal pain,difficulty breathing even sitting and constipation.
Maybe I am wishfull thinking but, glad to see the lights after all those months.
Taking this one day at a time with supports from my family’s.
Claude Turcotte.
Carpe Diem.

Jump to this post

Hi @capricorne1 Claude, I'm glad to hear that there is a chance that the mass may be benign. Wishing you the best as you wait for you MRI appointment.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 3, 2018
In reply to @christine19 "Hello! I have a sarcoma in my liver, and possibly in my lungs: epitheleioidhemangioendothelioma! Whew!! 15..." + (show)
@christine19

Hello! I have a sarcoma in my liver, and possibly in my lungs: epitheleioidhemangioendothelioma! Whew!! 15 syllables! otherwise known as “E.H.E.”. Diagnosed in 2008, I have had two surgeries (one at Mayo in MN), one in Phoenix (where I live), and a debTACE (outpatient) procedure. I have always been asymtomatic, fortunately! I am currently under the care of AZ-Mayo Clinic’s Dr. Mahesh Seetharam, and I am very happy and satisfied inder his care.
Dr.

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Hi @christine19
Welcome to Connect. I'd be interested in hearing more about your experience with DEB-TACE radiation treatment. I've been reading journal article about it online, but would like to hear more about the patient side of the treatment. What is it like? Are you finished with treatments or still getting them?

REPLY
disneyrn | @disneyrn | Jul 24, 2018

Hello,

I was diagnosed with synovial sarcoma earlier this year and am looking for others with sarcoma to talk to - it's so rare, I've really not found much in the way of support or information for patients online.

Looking forward to discussing more!

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 24, 2018

Hello @disneyrn

I am pleased that you found Mayo Connect, welcome. I do not have the same type of disorder you have, but I do have another rare form of cancer, neuroendocrine tumors (NET). Without Connect, I would feel very lonely in this journey.

I encourage you to read the posts of others in this discussion group and feel free to reply or ask them questions.

If you can share more, how was your synovial sarcoma diagnosed? What type of treatment(s) are you involved in right now?

Teresa

REPLY
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