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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.

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Terriebikes | @bicycle3 | Jan 21, 2023
In reply to @barman "Thank you so much.. please do keep us updated." + (show)
@barman

Thank you so much.. please do keep us updated.

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Will do

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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)
@sonshine161

Hi,

I just had a left pneumonectomy on Nov 30. Upon further examination they tell me my tumor was undifferentiated sarcomatoid carcnoma. It was also found in 5/19 lymph nodes. They took out all the cancer they could find along with the lung . No metastasis . Next step is a scan in may. Should i do anything in the mean time?

Jeff

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Pray.
Second opinion?

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1 reply
sonshine161 | @sonshine161 | Jan 21, 2023
In reply to @bicycle3 "Pray. Second opinion?" + (show)
@bicycle3

Pray.
Second opinion?

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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

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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

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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)
@barman

Thank you so much for your response!!
Please keep us updated with your health.. we'll be grateful.
Hoping for your soon recovery!!

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

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1 reply
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)
@zazu

From what I’ve learned, Dana Farber is one of the top (if not THE top) sarcoma centers in the world. My tissues were sent there for pathology from Chicago

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

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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)
@jeffk

I was diagnosed with Laryngeal Chondrosarcoma on July 12th, 2016. Fortunately after a very thorough diligence process which involved seeking out the best of the best surgeons across the country we found Dr. Eric Moore at Mayo. He was the only one out of eight doctors that was confident he could remove all of the cancer, rebuild my cricoid cartilage and maintain all of my functionality. On February 21, 2017 following five surgeries my trach was removed and I am cancer free and well on my way to a full recovery. My voice will never be the same given the tumor impaired my voice box and paralyzed on of my vocal cords. If there is any way in which I can add value I am happy to. Gratefully, Jeff

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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

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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!

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skullbasecancer4 | @skullbasecancer4 | Jan 25, 2023

Chondrosacroma skull based. Just had second surgery for removal . First time it was level 1 and second Level 2 . Anyone have this?

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