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.

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)

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

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.

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)

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.

amydunn | @amydunn | Mar 25, 2023

In reply to @colleenyoung "@amydunn, you might appreciate this discussion: - New to Cytoxan (cyclophosphamide)—advice and help appreciated https://connect.mayoclinic.org/discussion/new-to-cytoxan-advice-and-help-appreciated" + (show)

Thank you

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)

@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?

Colleen Young, Connect Director | @colleenyoung | Mar 25, 2023

In reply to @amydunn "Is there anyone who can give me information about the chemotherapy treatment involving Cyclophosphamide and the..." + (show)

@amydunn, you might appreciate this discussion:
- New to Cytoxan (cyclophosphamide)—advice and help appreciated https://connect.mayoclinic.org/discussion/new-to-cytoxan-advice-and-help-appreciated

Colleen Young, Connect Director | @colleenyoung | Mar 25, 2023

In reply to @phuds01 "Hello, my name is Lisa. My sweet daughter-in-law (Karla 27 yrs old) has just been diagnosed..." + (show)

@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?

Terriebikes | @bicycle3 | Mar 24, 2023

In reply to @bicycle3 "I have had surgery and two rounds of radiation and two rounds of chemo. Going without..." + (show)

Hard part for me is lack of appetite and loss of taste and fatigue overtakes my days.

Terriebikes | @bicycle3 | Mar 24, 2023

In reply to @sonnyfigueroa "Hi! My name is Sonny and I am a 49m living in Northern Nevada. I have..." + (show)

I have had surgery and two rounds of radiation and two rounds of chemo.
Going without treatments now for a while to see if there are changes. At least I can embrace some spring sunshine.
I have good care but wish the doctors were more of a team.
I am 75 with two grand children so at a different stage. Try to keep some step in your life and relationship open ness.
Blessings.