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

@jeffk

When my laryngeal chondrosarcoma (less than 200 cases ever) was diagnosed the first opinion I received from one of the top 10 surgeons in this area was that I may end up with a permanent trach and maybe a feeding tube. I ended up visiting 5 other surgeons and Mayo was the only place that provided me with hope that they could remove all the cancer and maintain the majority of functionality. I strongly advise you to seek additional opinions and Mayo should be at the top of that list.

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Jeff did you do a radiation series followup to your surgery? I had a synovial sarcoma in my jaw. Danial Price and Eric Moore did the surgery and reconstruction and I came out with clear margins. Radiation has been suggested as a followup for insurance and I’m debating the pros and cons. I’m 78 now.

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@rgotto41

Jeff did you do a radiation series followup to your surgery? I had a synovial sarcoma in my jaw. Danial Price and Eric Moore did the surgery and reconstruction and I came out with clear margins. Radiation has been suggested as a followup for insurance and I’m debating the pros and cons. I’m 78 now.

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Hi @rgotto41, I’m tagging @jeffk in this discussion so that he sees the question that you asked of him about surgery and radiation.

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@colleenyoung

Hi Heartbroken @amd123, That is surely a blow to your family and your son to find out that the cancer has returned after only 2 years. How is he doing after this cycle of chemo? How often does he get chemo?

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He has been struggling. He has lost 30 lbs since April. We just found out a new nodule has appeared where his sutures were. I’m devastated. We had to postpone chemo yesterday because his hemoglobin is low. I’m beyond destroyed over this.

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My name is Kay and I had a angiosarcoma on my little finger. I had surgery and radiation. Its been 5 years. I have never talked to anyone with that kind of cancer and am interested in talking with other people who have had something similar.

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@rgotto41

Jeff did you do a radiation series followup to your surgery? I had a synovial sarcoma in my jaw. Danial Price and Eric Moore did the surgery and reconstruction and I came out with clear margins. Radiation has been suggested as a followup for insurance and I’m debating the pros and cons. I’m 78 now.

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The good news is that Dr. Moore was able to get extremely great margins and 100% of the tumor. Fortunately I did not have to have any radiation. This was three years ago and I know that perspective on radiation has evolved. I would have a serious conversation with Dr. Moore about the benefits and potential concerns. As you most likely know he is very approachable and will engage in a healthy dialogue. Good luck to you!

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@kayham

My name is Kay and I had a angiosarcoma on my little finger. I had surgery and radiation. Its been 5 years. I have never talked to anyone with that kind of cancer and am interested in talking with other people who have had something similar.

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Hi @kayham, welcome to Connect. @brinys also has angiosarcoma. I hope she'll join this conversation.
Kay, now 5 years later, how are you? Do you have use of your little finger or was it removed during surgery?

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My finger was saved but many of the nerves were removed. Little fingers don't so much anyway. It looked like a brown scab and it hurt when I pressed on it. I was surprised that it was cancer. A lot of sarcomas are inside the body and not so easy to find.

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My husband was just diagnosed with Chondrosarcoma in his hip and pelvis. The plan is to remove his right hip, part of pelvis and leg. We are still in shock and although feel very confident in our team of Doctors, have concern that we are following with blind faith.

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