1. < Sarcoma
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 Sarcoma Support Group.

sarcomasurvivor | @sarcomasurvivor | Aug 7, 2018
In reply to @colleenyoung "Hi @me67 @udderplace @brinys @deborahe @jeffk @Laydeewinx @sheila2005 @funkynotes @zshivaughn @jacobito @swstar, I'd like to invite..." + (show)
@colleenyoung

Hi @me67 @udderplace @brinys @deborahe @jeffk @Laydeewinx @sheila2005 @funkynotes @zshivaughn @jacobito @swstar,
I'd like to invite you to the new discussion group for people living with sarcoma. What type of sarcoma have you been diagnosed with? Are you currently in treatment or finished with treatment?

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Hi everyone. Initially diagnosed with uterine sarcoma NOS in 2009. Surgery, AIM, radiation at local hospitals in Illinois. Started seeing Dr. Okuno at Mayo when my local oncologist said I no longer needed to be followed. Mayo diagnosed me with high grade undifferentiated uterine sarcoma. 9 years NED. Now yearly scans chest and abdomen.

REPLY
Kanaaz Pereira, Connect Moderator | @kanaazpereira | Aug 6, 2018
In reply to @colleenyoung "Hi @me67 @udderplace @brinys @deborahe @jeffk @Laydeewinx @sheila2005 @funkynotes @zshivaughn @jacobito @swstar, I'd like to invite..." + (show)
@colleenyoung

Hi @me67 @udderplace @brinys @deborahe @jeffk @Laydeewinx @sheila2005 @funkynotes @zshivaughn @jacobito @swstar,
I'd like to invite you to the new discussion group for people living with sarcoma. What type of sarcoma have you been diagnosed with? Are you currently in treatment or finished with treatment?

Jump to this post

Hello @sarcomasurvivor,

I'm so glad you've joined Connect - welcome!
I’d like to introduce you to @123cheryl @cvandyke @diane060 @kate123 @mdotsie @dezi @skunklady13 who have discussed uterine and endometrial cancer/sarcoma. While it would appear that your diagnoses differ, I thought you’d like to meet each other.

Although this discussion about uterine sarcoma took place a while ago, https://connect.mayoclinic.org/discussion/uterine-sarcoma/, I do hope @kathy555 @judithvt @dmas will return to join in share their insights.

@sarcomasurvivor, are you presently experiencing late side effects of the chemo and radiation?

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sarcomasurvivor | @sarcomasurvivor | Aug 6, 2018
In reply to @colleenyoung "Hi @me67 @udderplace @brinys @deborahe @jeffk @Laydeewinx @sheila2005 @funkynotes @zshivaughn @jacobito @swstar, I'd like to invite..." + (show)
@colleenyoung

Hi @me67 @udderplace @brinys @deborahe @jeffk @Laydeewinx @sheila2005 @funkynotes @zshivaughn @jacobito @swstar,
I'd like to invite you to the new discussion group for people living with sarcoma. What type of sarcoma have you been diagnosed with? Are you currently in treatment or finished with treatment?

Jump to this post

Hi everyone. I am NED 9 years after diagnosis of high grade undifferentiated uterine sarcoma. Surgery in 2009 by gyn/once in Barrington, IL. AIM chemo and radiation at Lutheran General, Park Ridge, IL. Oncologist wanted to stop screening after 8 years. Knew that sarcoma could come back after that. Now screened yearly at Mayo. Interested in connecting with anyone experiencing late effects of chemo/radiation.

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christine19 | @christine19 | Aug 2, 2018
In reply to @disneyrn "Hello, I was diagnosed with synovial sarcoma earlier this year and am looking for others with..." + (show)
@disneyrn

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!

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I have a sarcoma of the blood vessel linings in my liver called epithelioid hemangeoendothelioma—EHE, for short. Diagnosed in 2008; 2 surgeries plus an arterial-delivered chemo therapy since then. Always have been asymptomatic. Doctors also monitoring my lungs, as it’s common to metastisize there too. So far, no sarcoma definitively diagnosed in my lungs.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 25, 2018

@disneyrn, I'd like to introduce you to @superdave, who was also diagnosed with synovial sarcoma. I'm hoping the two of you can connect.

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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

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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
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
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.

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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
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.

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