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 | Mar 25, 2023
In reply to @skullbasecancer4 "My husband had the same type of tumor removed 27 years and was in great health...." + (show)
@skullbasecancer4

My husband had the same type of tumor removed 27 years and was in great health. Also had radiation. The tumor reoccured 27 years later . Last time it was a one this time 2/3 , which is
not great news for him
. But for the last 27 years he was in great health . Do you have any symptoms? He was operated on at
Jackson Memorial
Hospital twice now with an amazing team of doctors , if you need any help . They saved his life twice .

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@stin26, I wanted to check in with you. How are you doing? Did you see the reply from @skullbasecancer4 who is ready to answer questions for you?

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1 reply
phuds01 | @phuds01 | Mar 26, 2023
In reply to @colleenyoung "@phuds01, I'm tagging @winter23 @tynerlisa, who have a child with synovial sarcoma and @ellengrubb who herself..." + (show)
@colleenyoung

@phuds01, I'm tagging @winter23 @tynerlisa, who have a child with synovial sarcoma and @ellengrubb who herself has synovial sarcoma. You may also be interested in these discussions:
- Synovial sarcoma: Proton or conventional radiation after surgery? https://connect.mayoclinic.org/discussion/radiation-following-surgery-proton-vs-conventional-treatment/
- Synovial sarcoma: what treatments might I expect? https://connect.mayoclinic.org/discussion/synovial-surcoma/

Phuds, has she had her appointment at MD Anderson yet? What is the treatment plan?

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Good morning!
She did have her first initial appointment last week. She had an appointment Monday, March 27th to go over ct results and treatment plan. I assume they will stage it also. Her liver enzymes are elevated. Will know more tomorrow.

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1 reply
skullbasecancer4 | @skullbasecancer4 | Mar 26, 2023

That is a great idea . As I wife to to my husband ,who has had two base skull Chondrosacroma ‘a. First time it was removed 27 years and was level one. His symptoms were hoarse voice and back pain . It took many doctors to finally find it . I had to be a strong advocate to keep trying to find a cause of symptoms. He had it removed from a neurosurgeon and ENT . Amazing doctors at Jackson Memorial Hospital at that time he was 27. He had radiation. He had been completely healthy and we thought our nightmare was over . Until 6 months ago , no symptoms, routine scan …… another tumor was detected further down the bone in the skull. He again had surgery to remove , but this time , it was a level 2. He was recovering well, until he developed a spinal fluid leak . Ugh. Now he is home again recovering from that . We have spoken to an oncologist but have not decided what route to go yet . He is 57 now and has gone thru so much . It has been very difficult for me to see. Our doctors have been amazing . This time neurosurgeon was Dr. Morcos and same ENT at Jackson Memorial Hospital in Miami. If anyone has any questions, please feel free to ask . Also any support from anyone who has been through this.

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skullbasecancer4 | @skullbasecancer4 | Mar 26, 2023
In reply to @barman "Alright.. but.. just a doubt- don't they prescribe doxorubicin and ifosfamide for such stuff?" + (show)
@barman

Alright.. but.. just a doubt- don't they prescribe doxorubicin and ifosfamide for such stuff?

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Just curious did you decide to take the meds and are their bad side effects ? I am so sorry.

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Terriebikes | @bicycle3 | Mar 26, 2023
In reply to @colleenyoung "@phuds01, I'm tagging @winter23 @tynerlisa, who have a child with synovial sarcoma and @ellengrubb who herself..." + (show)
@colleenyoung

@phuds01, I'm tagging @winter23 @tynerlisa, who have a child with synovial sarcoma and @ellengrubb who herself has synovial sarcoma. You may also be interested in these discussions:
- Synovial sarcoma: Proton or conventional radiation after surgery? https://connect.mayoclinic.org/discussion/radiation-following-surgery-proton-vs-conventional-treatment/
- Synovial sarcoma: what treatments might I expect? https://connect.mayoclinic.org/discussion/synovial-surcoma/

Phuds, has she had her appointment at MD Anderson yet? What is the treatment plan?

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blessings!

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skullbasecancer4 | @skullbasecancer4 | Mar 26, 2023
In reply to @colleenyoung "@stin26, I wanted to check in with you. How are you doing? Did you see the..." + (show)
@colleenyoung

@stin26, I wanted to check in with you. How are you doing? Did you see the reply from @skullbasecancer4 who is ready to answer questions for you?

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Where do I find that . This is patient’s wife. Just learning how to do this.

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1 reply
skullbasecancer4 | @skullbasecancer4 | Mar 26, 2023
In reply to @bicycle3 "I am being saved multiple times also. Best wishes" + (show)
@bicycle3

I am being saved multiple times also.
Best wishes

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Have you had the same tumor and location? Did you ever do additionally treatment? How frequent was yours? What grade was yours? May I ask your age? Thank you

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Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 26, 2023
In reply to @skullbasecancer4 "Where do I find that . This is patient’s wife. Just learning how to do this." + (show)
@skullbasecancer4

Where do I find that . This is patient’s wife. Just learning how to do this.

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Hi @skullbasecancer4, you can see your previous post to @stin26 here: https://connect.mayoclinic.org/comment/832208/

How is your partner doing? How are you?

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1 reply
skullbasecancer4 | @skullbasecancer4 | Mar 27, 2023
In reply to @phuds01 "Good morning! She did have her first initial appointment last week. She had an appointment Monday,..." + (show)
@phuds01

Good morning!
She did have her first initial appointment last week. She had an appointment Monday, March 27th to go over ct results and treatment plan. I assume they will stage it also. Her liver enzymes are elevated. Will know more tomorrow.

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Thinking of you❤️

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