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?

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

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@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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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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@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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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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@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

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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@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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@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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@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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@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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She is doing better as far as the pain goes. They have been doing isolated radiation on the mass. However seems to be draining her. I was trying to get her into North Western in Chicago or Mayo don’t want to loose her over not getting proper treatment. You really don’t know how precious life is until someone you love could be taken away. I have a donation site up not having much luck, Have any ideas?

Robert

Liked by Dee

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@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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From what I understand the first surgery mass was in the femur bone, 15 CM was removed along with the hip Ball. Now there is another mass that is on the same side and on the pelvic bone? The mass has started to grow around the steel replacement previously put in. So I am confused here she was in 10 hours of surgery, it seems like to me the missed a mass it had to be there prior to the first surgery. What I am saying is the mass is already growing around the steel replacement this is in less than 6 months so it had to be missed. Now they don’t want to do surgery again to remove it? Makes no sense to me, there reason is to shrink the mass. or get her pain under control. Well the mass is causing the pain so eliminate the mass eliminate the pain. Finally someone is on the same page as me. Shrink or remove the mass then the pain will decrease. So they are doing isolated radiation to shrink the mass. Problem is she is so fatigue from the radiation. I certainly don’t want to loose her from treatments either.

Liked by Dee

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@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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Hi Jeff,
Thanks for checking in and congratulations on your upcoming anniversary and strong recovery! How goes your running? I am doing well. In two weeks I have my first scan since surgery 6 months ago and I’m hopeful that it is clear and all is well. My voice quality is not much changed, so I’m going to see a speech/lang therapist next month for an evaluation and see what options there might be to improve that. Take care and continued good health to you! Deb

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@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. I have been battling myxoid liposarcoma with round cell for 6+ years. Mine has around cell component. Mayo is the best. Radiation has few side effects. I would get tired more easily. Towards the end of treatment you may have skin breakdown. Myxoid responds well To radiation. You should have good results. Stay positive. It’s a marathon not a sprint.

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@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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I am getting daily radiation. I am on Day 3 today. Surgery should be somewhere in December if all goes well. I am meeting with the surgeon tomorrow.

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@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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When I had my 25 sessions of radiation, I would go to the gym and do a workout. It kept me from fatigue and my mind occupied. Just a thought to keep yourself strong for your upcoming surgery

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@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 was referred to the local (teaching hospital which has the current information and equipment. I got a lot better treatment there. The doctors were specialists that worked as a team. If I had not had the referral, I would have had to make appointments with them each a few months apart, for far more money and better care. Ask your doctor about it.

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