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.

Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 16, 2017
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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@c945105, how is your husband doing? How are you?

You mentioned that your husband had an ostomy for a time due to rectal cancer. You may be able to provide some insight for a new member who will be getting a colostomy next month. See the post here: https://connect.mayoclinic.org/discussion/ostomy-adapting-to-life-after-colostomy-ileostomy-or-urostomy/?pg=2#comment-76214

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Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 16, 2017
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

@bennyhill38, I wanted to check in and see how your wife is doing. How is chemo going? Has she finally been able to get relief from the pain?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 16, 2017
In reply to @godsgotthis "Hi my name is Chris and I am new to all of this cancer stuff. I..." + (show)
@godsgotthis

Hi my name is Chris and I am new to all of this cancer stuff. I was diagnosed with a myxoid liposarcoma in my left thigh last month and am starting my first radiation treatment at Mayo today. I am excited to get on the journey to healing. I am looking forward to hearing from you any tips and tricks to making these next 5 weeks go by quickly and as painlessly as possible. Thanks in advance for any advice.

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Hi Chris, I'm glad you found us here on Connect. I hope @udderplace and @kathythornjohnson will return to share the experiences with liposarcoma with you. Chris are you getting daily radiation treatments? Have you had surgery?

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godsgotthis | @godsgotthis | Oct 16, 2017
In reply to @kathythornjohnson "Hi. I was diagnosed with myxoid liposarcoma with round cell when I was 47. I was..." + (show)
@kathythornjohnson

Hi. I was diagnosed with myxoid liposarcoma with round cell when I was 47. I was misdiagnosed locally for two years prior to get a diagnosis from Mayo. I have had one large primary tumor in my thigh. I've had three distant recurrences. I will be celebrating my 6th year survival anniversary in August. I've found much support on the sarcoma support groups on Facebook.

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I just was diagnosed with a myxoid liposarcoma in my left thigh. I am starting radiation today. I am so glad to hear of your 6 year survival anniversary! I look forward to celebrating mine. Did your recurrences happen in the same area?

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godsgotthis | @godsgotthis | Oct 16, 2017

Hi my name is Chris and I am new to all of this cancer stuff. I was diagnosed with a myxoid liposarcoma in my left thigh last month and am starting my first radiation treatment at Mayo today. I am excited to get on the journey to healing. I am looking forward to hearing from you any tips and tricks to making these next 5 weeks go by quickly and as painlessly as possible. Thanks in advance for any advice.

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4 replies
jeffk | @jeffk | Oct 16, 2017
In reply to @deborahe "Similar to JeffK, I was diagnosed with a laryngeal cancer: Cricoid Chondrosarcoma. I was diagnosed in..." + (show)
@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

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Hello Deb, I hope this finds you well. I am quickly approaching my 1 year anniversary of the major removal and reconstruction surgery which was performed on October 24th, 2016. I have been blessed in recovery and am doing very well. As this day approaches I thought of your journey and wanted to check in to make sure you are well and walking at pace! Have a great day! Jeff

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c945105 | @c945105 | Sep 17, 2017
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

I'm so sorry your wife has to be in such great pain. I don't understand that with all the advances with controlling pain why anyone should be walking around with severe dehabilating chronic pain. I hope that the pain pump works to take the pain away so she can get through her treatments and get cured. I can only imagine how helpless you feel when she's in such pain. Sending you and her positive vibes and prayers to get through it all successfully.

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c945105 | @c945105 | Sep 17, 2017
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

Thank you for the positive thoughts. Yes, I will do my best to update on treatment and progress.

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c945105 | @c945105 | Sep 17, 2017
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

Thanks so much for info and also so glad you are doing great:) It's always encouraging to hear the success stories. We asked the one oncologist we've seen about proton therapy and he said it might be possible but most success is with tumors that are very defined in shape. Curious if your cancer was on the iliac or hip bone or somewhere else? Thanks

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bennyhill38 | @bennyhill38 | Sep 16, 2017
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

My wife has Osteosarcoma and is only 32. It really hurts to see her in so much pain. Dr. Rushing at IU Indianapolis is an expert in this type of rare cancer. This Dr. is amazing how he explains the type what it does and what to expect. According to statistics and research IU is the #1 hospital for Cancer in Indiana. IU is also connected to several hospitals Riley, St. Jude, and others. Never seen a hospital so huge. All I know from my experience in UI they are great people who care for my wife. They have compassion and empathy towards there patients. All you can do is be there for them and stay strong. I try as much as possible but at times I break down and cry to see my wife suffer this why. It even hurts more for her to ask WHY ME? The pain is so excruciating for her she asked them to just cut her leg off. I am optimistic the pain pump will work and they can continue with chemo to beat this.

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