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.

mary64300 | @mary64300 | Jan 21, 2023

@sonshine161 you seem to be in very good hands, indeed.

Terriebikes | @bicycle3 | Jan 21, 2023

In reply to @barman "Thank you so much.. please do keep us updated." + (show)

Will do

Terriebikes | @bicycle3 | Jan 21, 2023

In reply to @sonshine161 "Hi, I just had a left pneumonectomy on Nov 30. Upon further examination they tell me..." + (show)

Pray.
Second opinion?

sonshine161 | @sonshine161 | Jan 21, 2023

In reply to @bicycle3 "Pray. Second opinion?" + (show)

Actually the surgery was performed at Brigham Womans Mass General where i received my second opinion. Oregon Health and Science , my first opinion. weren’t sure surgery was best

tommie71 | @tommie71 | Jan 22, 2023

I go on Jan 23 to meet the team that hopefully will be able to tell me what the rest of my life will look like. The pet scan says soft tissue sarcoma. I’m going to Ou in Oklahoma City tomorrow. Since it’s so rare and not many places that seems to be the best. Kinda scared but have been reading as much as possible so I will know what to ask. I have thoughts of what I will do since I’m 71 female and wanting to spend as much time with my family rather than in hospitals. Any thoughts you have I would love to hear from you. Tommie

tommie71 | @tommie71 | Jan 22, 2023

In reply to @barman "Thank you so much for your response!! Please keep us updated with your health.. we'll be..." + (show)

May I ask your age? I am 71 and just starting to face it.

sonshine161 | @sonshine161 | Jan 23, 2023

In reply to @zazu "From what I’ve learned, Dana Farber is one of the top (if not THE top) sarcoma..." + (show)

Wow! My next gen sequencing report just came back. I’ll see what they have to say.

emattson | @emattson | Jan 24, 2023

In reply to @jeffk "I was diagnosed with Laryngeal Chondrosarcoma on July 12th, 2016. Fortunately after a very thorough diligence..." + (show)

Jeff K I have a situation quite similar to yours - a chondrosarcoma of my cricoid cartilage. While I have a doctor here in Houston, I would still like to seek out a wider opinion group as you did which led you to Dr Moore. I am curious as to why the other doctors you spoke with could not provide the surgery & outcome you were looking for. At age 71, quality of life is much more important to me than pure longevity. Would love to hear your thoughts as it appears you had an excellent process and outcome. Many thanks EMattson

jeffk | @jeffk | Jan 24, 2023

The only doctor who was highly confident that he could rebuild the cricoid cartilage that the Chondrosarcoma had pushed into my airway and paralyzed a vocal cord. Dr. Moore had an unconventional procedure to keep all of my functionality, breathing, eating, and talking. A few of the world class doctors we saw recommended a total laryngectamy was the only way to remove the entire tumor. I strongly recommend you go see Dr. Moore. Please share that you reached out to me. Alternatively, I can call him and introduce you. Under any circumstances you need at least 3 to 4 opinions and they will all have a different approach. Let me know if I can provide you with anything else. God Speed!