Diagnosed with sarcoma? Let's share

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?

Liked by Dee

@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

@bennyhill38. Feeling for you and your wife. My husband and I are experiencing so many of the same type of dilemmas and feelings as we deal with my sarcoma. Currently on "a break" from chemo after 1 cycle to heal a wound infection remaining from original surgery after it caused sepsis. This 3 weeks, my body is fighting the infection. Noone is fighting the cancer. Ventibug

@deborahe

Similar to JeffK, I was diagnosed with a laryngeal cancer: Cricoid Chondrosarcoma. I was diagnosed in Dec 2013 and immediately scheduled for a total laryngectomy. After doing a lot of research on this rare cancer, I found studies published by Dr Jan Kasperbauer at Mayo Rochester and sought a second opinion from him. I had two conservative “debulking” surgeries in Dec 2013 and July 2016 to reduce the tumor size and retain functionality of voice, breathing, eating and drinking. With tumor regrowth after the second debulking procedure, it was decided that more extensive surgery was needed to remove the tumor and structurally support my airway. I had that surgery April 4, 2017 and am progressing through recovery. I had a temporary tracheostomy for 2 months. My case is very similar to Jeff K’s and I am very thankful to have had his advice and support through my surgery and recovery. Our surgeons chose different methods to address our situations, but both have been successful.
I am also happy to help or listen.
Deb

Jump to this post

@jeffk. @deborahe. Love hearing the good news. Getting back to your workouts took lots of persistence. Very encouraging & motivating. Thanks for sharing. Ventibug

Liked by deborahe

@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. I have leiomyosarcoma, asymptomatic, as is often the case, until Stage 4. Had diagnosis, radical hysterectomy, removal of sigmoid colon in Feb 16, 2018 Dehiscence (stitches came open) 3/1. No followup care offerred so went to a Sarcoma Center, which has been SO much better, though my body is still struggling to cooperate with the medical plan. Started chemo with just a finger-tip size piece of granulation tissue remaining in healing wound. Unfortunately, that was enough to cause sepsis which was followed by mucocytis. Currently back home (which is lovely) with instructions and IV antibiotics for healing the wound completely. To go back to Sarcoma Center 6/11 for chemo restart. Long saga already, eh? Everyone has one, right?
Grateful for husband (43rd anniversary today) who takes very good care of me, 2 of 3 children very supportive (every family has one), lots of good friends, relationship with Divine that helps my daily life. And sarcoma still sucks. Ive already had a recurrence (before this month off). Not happy about my prognosis but it will be what it will be. I feel good today and it is gorgeous here today. Some days I do okay. Some days I am just sad. Busy trying to close my business this week. Sad. Lots of loss but enjoying what I can. Appreciate everyone's sharing and learn something from every post.

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.

After many tests ( ultrasound & Scan ) that we’re negatives ,I went to my surgeon who operated on me last year for an inguinal hernia and about my symptoms.
I was ask to obtained the scan CD.
Upon his review of the CD and discussions with a radiologist his prognosis was a lipopama cancer.
Upon checking on Mayo Clinic my symptoms are matching.
I have referred to an oncologist who requested another scan and I have an appointment next week.
Things are moving quickly and I have a support from my wife and will share with my families after the oncologist visit and the action’s plan.
Thanks to Mayo Clinic and the weath off informations and supports.
Claude

@capricorne1 Hello Claude

I see that this is your first post on Connect and I would like to welcome you. While I'm sorry to hear of your diagnosis of lipoma cancer, it sounds like you are fortunate to have gotten a diagnosis and that you are confident about your doctors and treatment at Mayo. I am pleased that you feel well supported at Mayo.

If you are comfortable sharing the results of your next appointment, I would be pleased to hear from you.

Teresa

Liked by capricorne1

@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.

Jump to this post

@christine19 Hello Christine:

I see that this is your first post on Mayo Connect – welcome! I am so glad to hear of your good treatment for E.H.E and I'm pleased to hear that you have received such good care at Mayo. How fortunate that you have been asymptomatic. I appreciate your sharing your experience, we all learn from each other and you have shared some valuable information that might help others.

I look forward to hearing from you again.

Teresa

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.

@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

Saw my oncologist for the first time yesterday, he saw the latest scan and could not confirm a liposarcoma.
The good news are:
The lung are clear.
If there is a cancer there is no metasse.
The mass might non-cancerigen.
A creatine blood sample was made and a MRI will conducted in July.
On stand-by

@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

Saw my Oncologist for the first time today.  I had lung cancer surgery 3 weeks ago.  Between she and I we’re doing a watch and wait, with a scan this month, then visit to her immediately after.  Then six month checkups.  Hope it works well for you @capricorne1.  MaryLou.

@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

@marylou705 Good to hear from you! Teresa

@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?

Jump to this post

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.

@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

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

@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

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

@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

Please login or register to post a reply.