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?

Interested in more discussions like this? Go to the Sarcoma Support Group.

@mhils

Hello,
I am living with a form of soft tissue sarcoma called solitary fibrous tumor (formerly called Hemangiopericytoma). In 2005 a mass was removed from my head in 2005 (then considered then considered “locally destructive.). Lump was initially dismissed by my primary care physician as a cyst (no tests ordered), I was told to call back if I wanted it removed. Six momths later I asked for this, a tumor was found and removed by Peter Black at Brigham and Women’s in Boston. He ordered 30 brain MRIs as a precaution and to prevent recurrence. Well it came back 15 years later and I was diagnosed again with a Stage 4 no cure metastasis, this time tumors in hipbones, left shoulder and 2 in the lung. Currently being treated at Dana Farber here in Boston with pazonapib and have a had few rounds of radiation too. I am doing ok but open to clinical trials for a possible cure some day, presuming that sarcoma specialists at Mayo share this information with Dana Farber practitioners? There is always hope.

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@mhils, yes, there is always hope. I invite you to join the discussion here:
- Solitary Fibrous Tumor: Anyone have experience with this?
https://connect.mayoclinic.org/discussion/solitary-fibrous-tumor/
- Solitary fibrous brain tumor WHO Grade 3.
https://connect.mayoclinic.org/discussion/solitary-fibrous-brain-tumor-who-grade-3/

If you would like to find out more about clinical trials available through Mayo Clinic, you can search the database or call to talk with a study coordinator. See more here:
- Find clinical trials https://www.mayo.edu/research/clinical-trials
Contact for cancer-related clinical study questions
Phone: 855-776-0015 (toll-free)

How are you doing on pazopanib? Any side effects?

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In reply to @happywiredhope1 "pleomorphic sarcoma" + (show)
@happywiredhope1

pleomorphic sarcoma

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@happywiredhope1, I invite you to take part in this related discussion to connect with others with they same type of sarcoma:
- Undifferentiated Pleomorphic Sarcoma
https://connect.mayoclinic.org/discussion/sarcoma-256d3d/

See allPleomorphic Sarcoma discussions: https://connect.mayoclinic.org/group/sarcoma/?search=pleomorphic%20sarcoma&index=discussions

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@zazu

I’m sorry you have been going through all of this. Stressful and devastating. Certainly a huge punch in the gut. I urge you to reach out to your local cancer center for emotional support and counseling. Here’s my story:
I had radiation for a low grade hormone positive BC in 1999. In 2017 I found a lump under my arm and it was spindle cell pleomorphic sarcoma. 2 surgeries to remove 2 ribs and get wide margins. Extremely painful recovery with questionable lung nodules. Then one year later they found another breast tumor in the exact spot where the radiation boost was delivered. Triple negative BC this time, bilateral mastectomy and chemotherapy. Possibly radiation induced but nobody has declared that. I had an emotional breakdown after the mastectomy surgery, no block given and woke up feeling like they had taken a burning hot machete and sliced off my breasts. It was a very traumatic experience and I still have flashbacks. You have been through some very traumatic experiences so you may want to consider some counseling to help cope with that. I’m 5 years out and still go for emotional therapy. It has helped me get out of my own anxiety and fear. It’s not easy and PTSD did a real thing. Please reach out to me when you need to talk, cry, swear, whatever it takes

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Your journey has been most difficult and I can understand all the emotions you mentioned. I have been diagnosed with very rare breast sarcoma and still undergoing other biopsies to check other organs for cancer before treatment. Life gets very complicated with an illness like this. Jrs2024

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Unfortunately the biospy came back as Myxofibrosarcoma MFS. Appears to be low grade but have to get a CT scan of chest to see if it has spread. I'm terrified.

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@bendavid

Hi. I am contacting you for a friend who has Angiosarcoma and has just had his lower leg amputated at the Mayo Clinic, Jacksonville. I would like to know about the Sarcoma Cancer Center that you mention. Where is it and do you recommend it?

Thank you,

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Hi! It’s located in Overland Park, KS. The University of Kansas Health Systems Sarcoma Center. I do highly recommend it!

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@afeller

When I noticed the lump in my upper arm in early 2023 I contacted my primary care doctor, who ordered an ultrasound. Those results were inconclusive, and I was eventually sent to a general surgeon for a biopsy. I opted for an incision biopsy in September, as I had had tumors in my breast in 2020 and did not want to go through waiting for needle biopsy results again (those tumors were benign). The pathology of the tumor removed from my arm was diagnosed as dedifferentiated liposarcoma. I am fortunate to live near a city with a Sarcoma Cancer Center, and was referred there for follow-up tests. They changed the diagnosis to be stage 2, grade 2 pleomorphic liposarcoma and performed a second surgery to ensure all of the tumor had been removed and to take the proper margins. No chemo or radiation was ordered, because the tumor had already been removed prior to me arriving at the Sarcoma Center. I am now in the monitoring phase, and for the next 2 years I will have chest, abdomen and pelvis CT scans every 3 months and an MRI of my right upper arm every 6 months. I live my personal life in quarters, now, which is odd and a little funny, given the fact that I am an accountant and live my professional life in quarters as well. First quarter (Q1) 2024 CT scans were clear, and so were Q2. I just had the first 6 month MRI and am waiting on those test results.

Every time my appointments come up I get so anxious. I try to tell myself it will be okay, that I am fortunate to have acted on finding the lump quickly so it was caught early and the odds are in my favor. It doesn't stop the little voice in the back of my head from asking "Is this the time when I find out it has come back?". Its very nerve racking! One one hand, I have been motivated to live my life in the moment and to stop waiting to do things I have always wanted or always loved to do, but didn't do. Coming so close to touching a possible terminal illness has a way of making a person take their head out of the sand and open their eyes to really see the world. On the other hand, however, is the feeling of being blind-sided knowing that a rare and aggressive cancer could be growing somewhere in my body and I don't know it. I don't feel it. It could be there just hiding and waiting for the opportunity to grow and invade other areas of my body. The lump in my arm was completely painless. In fact, I almost didn't get it checked out! I wish I didn't hold my breath until the test results come back clear and then I can breathe again. I imagine the possibilities if the cancer has returned. How advanced will it be? What will be the treatment plan? How sick will I get? How much time do I have? It all comes down to time in the end. A life measured in quarters; 3 months of living for the moment then a few days worrying and obsessing until test results are in, then 3 more months until the next time. I noticed with this round of tests that I have stopped dreaming of the future beyond 6 months out. I don't know when that happened, I didn't decide to stop dreaming.

I also struggle with anger, and this is where I may lose some of your empathy and compassion, but I do need to say what I am about to say. I am angry because I am fat. Morbidly obese, but I guess now they call it Obesity level III. I have struggled with my weight for more than half my life and had even had some success when I found the lump in my arm. I had been trying so hard, and had lost 45 lbs! It is not lost on me that I may not have found the lump at all had I not lost the weight, but the fact that its liposarcoma just galls me! My first question was "Did my weight give me cancer?". I have found no link between body weight and the causes liposarcoma, even if the "lipo" could mean "Fat or adipose", but it doesn't stop me from wondering. Did I do this to myself? And if I didn't, if obesity has nothing to do with it, then that just sucks! I want something or someone to blame! I want a source for this, some way to tell myself, "Oh yeah, that is what made this happen." Doctors have been telling me for 20 years that I will die from an illness stemming from my weight problems, and I still might, but it is hard for me to wrap my head around my cancer not manifesting out of obesity and, yes, it pisses me off to know that it probably doesn't relate at all. Now, when I am more motivated than ever to change to a healthy lifestyle, it sometimes feels like a mute point. I am still doing it, though, still committed to losing weight and getting healthy, but I ask myself if it is worth it? For the next 3 months, or for Q3, it is! Until I get to the point that nothing more can be done to fight my cancer I will continue to fight the devil that I know, Obesity, and prepare for the possible fight with the devil I don't know, Pleomorphic Liposarcoma.

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Hi. I am contacting you for a friend who has Angiosarcoma and has just had his lower leg amputated at the Mayo Clinic, Jacksonville. I would like to know about the Sarcoma Cancer Center that you mention. Where is it and do you recommend it?

Thank you,

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When I noticed the lump in my upper arm in early 2023 I contacted my primary care doctor, who ordered an ultrasound. Those results were inconclusive, and I was eventually sent to a general surgeon for a biopsy. I opted for an incision biopsy in September, as I had had tumors in my breast in 2020 and did not want to go through waiting for needle biopsy results again (those tumors were benign). The pathology of the tumor removed from my arm was diagnosed as dedifferentiated liposarcoma. I am fortunate to live near a city with a Sarcoma Cancer Center, and was referred there for follow-up tests. They changed the diagnosis to be stage 2, grade 2 pleomorphic liposarcoma and performed a second surgery to ensure all of the tumor had been removed and to take the proper margins. No chemo or radiation was ordered, because the tumor had already been removed prior to me arriving at the Sarcoma Center. I am now in the monitoring phase, and for the next 2 years I will have chest, abdomen and pelvis CT scans every 3 months and an MRI of my right upper arm every 6 months. I live my personal life in quarters, now, which is odd and a little funny, given the fact that I am an accountant and live my professional life in quarters as well. First quarter (Q1) 2024 CT scans were clear, and so were Q2. I just had the first 6 month MRI and am waiting on those test results.

Every time my appointments come up I get so anxious. I try to tell myself it will be okay, that I am fortunate to have acted on finding the lump quickly so it was caught early and the odds are in my favor. It doesn't stop the little voice in the back of my head from asking "Is this the time when I find out it has come back?". Its very nerve racking! One one hand, I have been motivated to live my life in the moment and to stop waiting to do things I have always wanted or always loved to do, but didn't do. Coming so close to touching a possible terminal illness has a way of making a person take their head out of the sand and open their eyes to really see the world. On the other hand, however, is the feeling of being blind-sided knowing that a rare and aggressive cancer could be growing somewhere in my body and I don't know it. I don't feel it. It could be there just hiding and waiting for the opportunity to grow and invade other areas of my body. The lump in my arm was completely painless. In fact, I almost didn't get it checked out! I wish I didn't hold my breath until the test results come back clear and then I can breathe again. I imagine the possibilities if the cancer has returned. How advanced will it be? What will be the treatment plan? How sick will I get? How much time do I have? It all comes down to time in the end. A life measured in quarters; 3 months of living for the moment then a few days worrying and obsessing until test results are in, then 3 more months until the next time. I noticed with this round of tests that I have stopped dreaming of the future beyond 6 months out. I don't know when that happened, I didn't decide to stop dreaming.

I also struggle with anger, and this is where I may lose some of your empathy and compassion, but I do need to say what I am about to say. I am angry because I am fat. Morbidly obese, but I guess now they call it Obesity level III. I have struggled with my weight for more than half my life and had even had some success when I found the lump in my arm. I had been trying so hard, and had lost 45 lbs! It is not lost on me that I may not have found the lump at all had I not lost the weight, but the fact that its liposarcoma just galls me! My first question was "Did my weight give me cancer?". I have found no link between body weight and the causes liposarcoma, even if the "lipo" could mean "Fat or adipose", but it doesn't stop me from wondering. Did I do this to myself? And if I didn't, if obesity has nothing to do with it, then that just sucks! I want something or someone to blame! I want a source for this, some way to tell myself, "Oh yeah, that is what made this happen." Doctors have been telling me for 20 years that I will die from an illness stemming from my weight problems, and I still might, but it is hard for me to wrap my head around my cancer not manifesting out of obesity and, yes, it pisses me off to know that it probably doesn't relate at all. Now, when I am more motivated than ever to change to a healthy lifestyle, it sometimes feels like a mute point. I am still doing it, though, still committed to losing weight and getting healthy, but I ask myself if it is worth it? For the next 3 months, or for Q3, it is! Until I get to the point that nothing more can be done to fight my cancer I will continue to fight the devil that I know, Obesity, and prepare for the possible fight with the devil I don't know, Pleomorphic Liposarcoma.

REPLY

Surgery October 23.

Evident in xray March 2020 after a fall. Orthopaedic surgeon did not act on it and there followed 3 years of mis diagnosis.

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@mhils

Hello,
I am living with a form of soft tissue sarcoma called solitary fibrous tumor (formerly called Hemangiopericytoma). In 2005 a mass was removed from my head in 2005 (then considered then considered “locally destructive.). Lump was initially dismissed by my primary care physician as a cyst (no tests ordered), I was told to call back if I wanted it removed. Six momths later I asked for this, a tumor was found and removed by Peter Black at Brigham and Women’s in Boston. He ordered 30 brain MRIs as a precaution and to prevent recurrence. Well it came back 15 years later and I was diagnosed again with a Stage 4 no cure metastasis, this time tumors in hipbones, left shoulder and 2 in the lung. Currently being treated at Dana Farber here in Boston with pazonapib and have a had few rounds of radiation too. I am doing ok but open to clinical trials for a possible cure some day, presuming that sarcoma specialists at Mayo share this information with Dana Farber practitioners? There is always hope.

Jump to this post

Hello. I have 6 dedifferentiated chondrosarcoma lesions in my left hip femur and ankle. And another in the right humerus. The primary was in my right femur. I lost my femur, knee and 3 quads in surgery. I had me tumour tested for the IDH1 gen ed mutation by FoundaOne. It was positive. I have been on a therapy named Tibsovo for 105 days now. My PET scan 2 weeks ago showed early signs that tumour growth had slowed significantly and that the tumour in my arm had actually reduced a little in size. It is all uncertain but does show promise. It might be worthwhile being checked for the IDH1 mutation. The therapy has enjoyed a lot of success for AML and bile duct cancer. I am happy to provide more information. My name is Richard..

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Hello,
I am living with a form of soft tissue sarcoma called solitary fibrous tumor (formerly called Hemangiopericytoma). In 2005 a mass was removed from my head in 2005 (then considered then considered “locally destructive.). Lump was initially dismissed by my primary care physician as a cyst (no tests ordered), I was told to call back if I wanted it removed. Six momths later I asked for this, a tumor was found and removed by Peter Black at Brigham and Women’s in Boston. He ordered 30 brain MRIs as a precaution and to prevent recurrence. Well it came back 15 years later and I was diagnosed again with a Stage 4 no cure metastasis, this time tumors in hipbones, left shoulder and 2 in the lung. Currently being treated at Dana Farber here in Boston with pazonapib and have a had few rounds of radiation too. I am doing ok but open to clinical trials for a possible cure some day, presuming that sarcoma specialists at Mayo share this information with Dana Farber practitioners? There is always hope.

REPLY
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