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?

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@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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I was diagnosed with a Grade 1 Chondrosarcoma in my left humerus in May 2009. Because I hadn't had any symptoms when I received the news I was told that surgery was required as quickly as possible as the humeral head appeared near to collapse. As all of us with these diagnosis know when we first are told these things it is akin to a star imploding, our world closes in, well it did in my case anyway. I couldn't form complete sentences much less make important decisions about my health care. Over the years I've reflected on this incredibly important moment in time that I can never "do over" no matter how much I wish I could with the benefit of hindsight. My surgeon was so confident and told me the surgery he planned to do: remove the cancerous humerus leaving only enough to anchor a prosthetic, cover it with a donor bone to attach muscle, ligaments, etc. to and remove/replace the shoulder as well. If I sound like I understood any of that while in his office, I did not. My father & sister were there as well and told me later what he had said. What's lacking in this conversation is this: choices. He didn't offer any. He told us what he intended to do & that's what was done. There was never a whiff nor a sniff approaching a discussion prior to the surgery of any alternatives. I bring this up for a reason which only became relevant after the deed was done. The surgery was scheduled at the next available date, within 2 weeks from the diagnosis, and done as he had described. When I woke up in recovery the nerve block in the left shoulder was still doing its job. But not long after I arrived in my assigned room I could tell I needed the IV pain meds. My sister is an RN so was keeping a close eye on everything. She monitored the pain pump & we both became concerned when I got no relief. She immediately called for help but by the time the nurses were able to get a doctor's order for a different pain medication I'd passed out. That pain crisis was just the 1st of many such crisis to come. By the end of 2010 I'd had 2 more surgeries, the 1st was to try to stop the prosthetic from moving. That failed so the 3rd surgery removed all the "off the shelf" original prosthetics with custom made prosthetics. The #1 reason my surgeon always gave me for "limb sparing" surgery was to save my hand because despite all the great progress with lower limb prosthetics, the upper limb prosthetics, especially for the hand aren't good. And he was so confident, God love him, he was just so darn confident in himself. And I had to go & screw it all up. That really messed with him for awhile, he was not kind. He dismissed the pain I was in & as my hand got worse & I questioned the wisdom of the limb sparing surgery I stopped wanting to even see him anymore. Eventually we found some common ground but his office never followed up with me once post-ops were done. I had so many questions, about the cancer, about what else could be done to help me, about the pain I am in, so many questions and there was no help from him nor his office. I had never felt so damaged, so angry, so alone. Because after each surgery I'd come home & it was just me in such terrible pain so I mentally detached myself from the arm. It took some time but eventually I got the diagnosis – chronic pain syndrome (CPS). It set into the left shoulder and upper arm & resides there still. I was prescribed opioides for 3 years but because of their side effects I requested alternatives. A spinal cord stimulator was tried but failed so I have been using an intrathecal pain pump for almost 5 years now. By far my greatest frustration after all these years is the lack of information on my sarcoma and any help, therapies, medical equipment, etc. In my area there are only 2 surgeons who will accept patients like me & I've been to both of them. My arm is weak, I cannot raise it to shoulder height, my hand is numb & tingling. I cannot use the arm to drive & because I could no longer do the essential elements of my job I was disability retired in 2011.

I'll stop here to apologize, I am sorry for how this must sound. For the first few years I was angry & depressed, I'm the 1st to admit that. This took away so many things & changed my life forever. It all happened so fast.

But I smile more now. Smiling doesn't cure cancer or pain, turn back the clock or give me my job back. But as someone I admire said recently "pain is mandatory, suffering is optional."

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@boostar

I was diagnosed with a Grade 1 Chondrosarcoma in my left humerus in May 2009. Because I hadn't had any symptoms when I received the news I was told that surgery was required as quickly as possible as the humeral head appeared near to collapse. As all of us with these diagnosis know when we first are told these things it is akin to a star imploding, our world closes in, well it did in my case anyway. I couldn't form complete sentences much less make important decisions about my health care. Over the years I've reflected on this incredibly important moment in time that I can never "do over" no matter how much I wish I could with the benefit of hindsight. My surgeon was so confident and told me the surgery he planned to do: remove the cancerous humerus leaving only enough to anchor a prosthetic, cover it with a donor bone to attach muscle, ligaments, etc. to and remove/replace the shoulder as well. If I sound like I understood any of that while in his office, I did not. My father & sister were there as well and told me later what he had said. What's lacking in this conversation is this: choices. He didn't offer any. He told us what he intended to do & that's what was done. There was never a whiff nor a sniff approaching a discussion prior to the surgery of any alternatives. I bring this up for a reason which only became relevant after the deed was done. The surgery was scheduled at the next available date, within 2 weeks from the diagnosis, and done as he had described. When I woke up in recovery the nerve block in the left shoulder was still doing its job. But not long after I arrived in my assigned room I could tell I needed the IV pain meds. My sister is an RN so was keeping a close eye on everything. She monitored the pain pump & we both became concerned when I got no relief. She immediately called for help but by the time the nurses were able to get a doctor's order for a different pain medication I'd passed out. That pain crisis was just the 1st of many such crisis to come. By the end of 2010 I'd had 2 more surgeries, the 1st was to try to stop the prosthetic from moving. That failed so the 3rd surgery removed all the "off the shelf" original prosthetics with custom made prosthetics. The #1 reason my surgeon always gave me for "limb sparing" surgery was to save my hand because despite all the great progress with lower limb prosthetics, the upper limb prosthetics, especially for the hand aren't good. And he was so confident, God love him, he was just so darn confident in himself. And I had to go & screw it all up. That really messed with him for awhile, he was not kind. He dismissed the pain I was in & as my hand got worse & I questioned the wisdom of the limb sparing surgery I stopped wanting to even see him anymore. Eventually we found some common ground but his office never followed up with me once post-ops were done. I had so many questions, about the cancer, about what else could be done to help me, about the pain I am in, so many questions and there was no help from him nor his office. I had never felt so damaged, so angry, so alone. Because after each surgery I'd come home & it was just me in such terrible pain so I mentally detached myself from the arm. It took some time but eventually I got the diagnosis – chronic pain syndrome (CPS). It set into the left shoulder and upper arm & resides there still. I was prescribed opioides for 3 years but because of their side effects I requested alternatives. A spinal cord stimulator was tried but failed so I have been using an intrathecal pain pump for almost 5 years now. By far my greatest frustration after all these years is the lack of information on my sarcoma and any help, therapies, medical equipment, etc. In my area there are only 2 surgeons who will accept patients like me & I've been to both of them. My arm is weak, I cannot raise it to shoulder height, my hand is numb & tingling. I cannot use the arm to drive & because I could no longer do the essential elements of my job I was disability retired in 2011.

I'll stop here to apologize, I am sorry for how this must sound. For the first few years I was angry & depressed, I'm the 1st to admit that. This took away so many things & changed my life forever. It all happened so fast.

But I smile more now. Smiling doesn't cure cancer or pain, turn back the clock or give me my job back. But as someone I admire said recently "pain is mandatory, suffering is optional."

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Hi @boostar, welcome to Connect. Great phrase “pain is mandatory, suffering is optional.” Easier said than done for sure. Like you, I like to have options and be a partner in decisions about my care. I’ve also seen cancer patients experience real stress and anguish over making the “right” decision when multiple treatment options are available. Who’s to know? Like you said, one can’t turn back the clock. What steps do you take to move forward? What gives you joy and meaning?

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@dancingreendog

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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@dancingreendog Welcome to MayoClinicConnect, an on-going discussion site where everyone shares their stories and try to help each other. I’m just sorry I didn’t see your post before now. I can only imagine the shock you must feel at the diagnosis. But I am also glad to hear that you feel confident in your doctors.
Have you had a chance to learn about the changes that this may bring about? What have the doctors said about what you can expect? Please stay in touch as I’m sure other members would like to help

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Hi. I just got biopsy results back indicating angiosarcoma in my left breast probably due to radiation treatment I received for breast cancer 6 years ago when I turned 50. I also had 8 lymph nodes removed back then so I’ve been dealing with lymphedema in that breast. I had a bruise that went away then returned about 8 months ago. Didn’t think much of it till it started to spread and the skin thickened. I know this is rare and am seeking the best care. Any help appreciated.

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@sherirp

Hi. I just got biopsy results back indicating angiosarcoma in my left breast probably due to radiation treatment I received for breast cancer 6 years ago when I turned 50. I also had 8 lymph nodes removed back then so I’ve been dealing with lymphedema in that breast. I had a bruise that went away then returned about 8 months ago. Didn’t think much of it till it started to spread and the skin thickened. I know this is rare and am seeking the best care. Any help appreciated.

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I had sarcoma (undifferentiated pleomorphic spindle cell) between two ribs possibly caused by radiation after a lumpectomy 18 years previously. I recommend going to a sarcoma center like Mayo, MD Anderson, Dana Farber, or MSK. It’s very important to assemble a team for your care with multiple disciplinary backgrounds. It is extremely rare but increasing due to breast conserving treatment. Ask for genomic testing on the tumor. I’ve had 5 surgeries including bilateral mastectomy because I developed a different cancer in the same breast a few months later. I didn’t truly understand how aggressive this is, I just wanted it out. I know it’s overwhelming and we are walking through a groundbreaking time in this type of cancer.

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@zazu

I had sarcoma (undifferentiated pleomorphic spindle cell) between two ribs possibly caused by radiation after a lumpectomy 18 years previously. I recommend going to a sarcoma center like Mayo, MD Anderson, Dana Farber, or MSK. It’s very important to assemble a team for your care with multiple disciplinary backgrounds. It is extremely rare but increasing due to breast conserving treatment. Ask for genomic testing on the tumor. I’ve had 5 surgeries including bilateral mastectomy because I developed a different cancer in the same breast a few months later. I didn’t truly understand how aggressive this is, I just wanted it out. I know it’s overwhelming and we are walking through a groundbreaking time in this type of cancer.

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Thanks so much for your reply! I am seeing a breast surgeon today and will know more about my sarcoma team. I know we can beat this!

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Good luck! I’m curious about the genomic testing. Let me know how that goes

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