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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.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 10, 2017

@suzanneb I'm so glad that you entered into this conversation! Sharing your husband's story adds to a sense of optimism and hope that is available to us all dealing with rare types of cancer, but especially sarcoma. Finding the right hospital system and doing that which was not practical was very good for your family, congratulations on the good results! Teresa

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Suzanne | @suzanneb | Jul 10, 2017

I hope it's ok for me to post- my husband had a sarcoma and I was his caregiver. He was diagnosed at age 39 in 2009 with a stage 3 "Ewings-like" sarcoma on his left leg near his knee & luckily with no bony involvement.
It took longer than usual for diagnosis since it wasn't exactly Ewings. I think they explained that it had slightly different DNA.
Finally they decided to say Ewings 'like' and treat it as such.
We lived in Dallas at the time and saw 3 Dr's. We decided to go to Mayo (Rochester) for another opinion. We were most comfortable with the doctors and approaches there. The most important part was surgery to get clear margins. Several doctor friends gave advice that since this is such a rare cancer, he needs to find a top surgeon who has had many, many experiences with treating sarcomas.
His team made the plan for him to do several rounds of chemo (he was considered young in cancer years so he had a rigorous pediatric regimen), 5 weeks of radiation, surgery to remove the tumor, followed with several more rounds of chemo which was 10 months total treatment.
His oncologist was fantastic. He worked closely with our oncologist in Dallas so we could stay at home for treatment. We lived in Rochester for 5 weeks with our 2 daughters during radiation, followed by the surgery.
He finished with 6 rounds of chemo at home and finished in May 2010. We have always come back for check ups so his doctors could use their equipment, radiologists, and have their eyes on him. Not super practical to go back and forth, but cancer isn't very practical! 😉 I hope that helps!

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3 replies
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jul 10, 2017
In reply to @kathythornjohnson "Hi. I was diagnosed with myxoid liposarcoma with round cell when I was 47. I was..." + (show)
@kathythornjohnson

Hi. I was diagnosed with myxoid liposarcoma with round cell when I was 47. I was misdiagnosed locally for two years prior to get a diagnosis from Mayo. I have had one large primary tumor in my thigh. I've had three distant recurrences. I will be celebrating my 6th year survival anniversary in August. I've found much support on the sarcoma support groups on Facebook.

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@kathythornjohnson, Good Monday Morning. Thank-you for sharing your words of encouragement and wisdom. I am visiting you from the Transplant discussion group, to say that your beautiful statement is a testimony of hope for all of us.
Blessings to you as you continue your health journey'
Rosemary

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 10, 2017
In reply to @kathythornjohnson "Hi. I was diagnosed with myxoid liposarcoma with round cell when I was 47. I was..." + (show)
@kathythornjohnson

Hi. I was diagnosed with myxoid liposarcoma with round cell when I was 47. I was misdiagnosed locally for two years prior to get a diagnosis from Mayo. I have had one large primary tumor in my thigh. I've had three distant recurrences. I will be celebrating my 6th year survival anniversary in August. I've found much support on the sarcoma support groups on Facebook.

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@kathythornjohnson What a wonderful reply to my asking you for some words of encouragement/advice to others dealing with sarcoma. You have covered many of the situations that we all encounter when we deal with a chronic illness, but especially those with sarcoma. Thanks so much! Teresa

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Kathy | @kathythornjohnson | Jul 9, 2017
In reply to @kathythornjohnson "Hi. I was diagnosed with myxoid liposarcoma with round cell when I was 47. I was..." + (show)
@kathythornjohnson

Hi. I was diagnosed with myxoid liposarcoma with round cell when I was 47. I was misdiagnosed locally for two years prior to get a diagnosis from Mayo. I have had one large primary tumor in my thigh. I've had three distant recurrences. I will be celebrating my 6th year survival anniversary in August. I've found much support on the sarcoma support groups on Facebook.

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What I&apos;ve learned during the last 6 years:*The actuality of my situation is rarely as awful as my imagination.*There is always reason for hope. What you hope for may change but there is always hope.*Dont believe everything you read on the Internet about your prognosis. Often, what you read on the Internet is best case or worst-case. We are rarely best case or worst-case. *When your situation is hardest remember that you can get through the next 60 seconds. Break it down as much as you need to. *If you are working with Mayo Clinic, you have world renowned doctors who see Sarcoma daily in your corner. Make certain you are at a sarcoma center. A regular oncologist may only see one or two sarcomas in their career. *Don&apos;t ignore your mental health. Ask for help getting through treatment and the fear following treatment. There are options. 

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 9, 2017
In reply to @cvandyke "In December 2016, I was diagnosed with low grade metastatic uterine leiomyosarcoma. I had some troubling..." + (show)
@cvandyke

In December 2016, I was diagnosed with low grade metastatic uterine leiomyosarcoma. I had some troubling symptoms in December 2014. A CT scan indicated a very large uterine tumor, and I was scheduled for a radical hysterectomy. I was told the tumor was the size of a softball. The pathology report came back with a rare diagnosis of a Smooth Muscle Tumor of Uncertain Malignant Potential (STUMP), which means that the tumor wasn't benign, but it didn't qualify as being considered malignant either. The pathology report was sent to Mayo Clinic and two pathologists confirmed the diagnosis. My surgical oncologist, who is very well respected both nationally and internationally, indicated that he had never had a patient with this diagnosis. The protocol indicated no further treatment other than to monitor me through regular CT scans. My first six month scan indicated a tumor in one of my kidneys. I was referred to an urology oncologist for surgery. The pathology report indicated I had Chromophobe renal cell cancer, which also is somewhat rare. Once again, Mayo Clinic confirmed the pathology report. Surgery was the only treatment with CT follow-ups. In March 2016, a CT scan of my lungs indicated a small nodule. Six months later, there were a couple more nodules and by December, a CT scan showed 4 nodules. At that point, it was felt that one nodule was big enough to biopsy. The diagnosis was a low grade metastatic leiomyosarcoma as the biopsied tissue was uterine based and tested positive for estrogen. Three doctors from Mayo confirmed the diagnosis. My surgeon referred me to a medical oncologist who is head of the sarcoma program at a major Chicago hospital, who explained that the latest diagnosis changes my STUMP diagnosis to a leiomyosarcoma. Because the lesions are estrogen dependent, I have been prescribed Anastrozole (generic for Arimidex), which is a drug taken by many breast cancer patients. The drug blocks the formation of estrogen in your body. The lesions need estrogen and without it, they can't grow. After two months on the medication, a CT scan indicated one nodule was gone and the three others had shrunk in size. My next scan is in a couple of weeks and I'm hoping for more good results.

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Hi Carolyn @cvandyke, welcome to Connect. I'd like to introduce you to @diane060 who also has metastatic endometrial (uterine) carcinosarcoma. While it would appear that your diagnoses differ, I thought you'd like to meet each other.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 9, 2017
In reply to @kathythornjohnson "Hi. I was diagnosed with myxoid liposarcoma with round cell when I was 47. I was..." + (show)
@kathythornjohnson

Hi. I was diagnosed with myxoid liposarcoma with round cell when I was 47. I was misdiagnosed locally for two years prior to get a diagnosis from Mayo. I have had one large primary tumor in my thigh. I've had three distant recurrences. I will be celebrating my 6th year survival anniversary in August. I've found much support on the sarcoma support groups on Facebook.

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@kathythornjohnson I'm so pleased that you have such a good support network, that does mean everything. As we all learn from each other on Mayo Connect, what sort of encouragement or advice would you offer others with this type of diagnosis? Teresa

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Kathy | @kathythornjohnson | Jul 9, 2017
In reply to @kathythornjohnson "Hi. I was diagnosed with myxoid liposarcoma with round cell when I was 47. I was..." + (show)
@kathythornjohnson

Hi. I was diagnosed with myxoid liposarcoma with round cell when I was 47. I was misdiagnosed locally for two years prior to get a diagnosis from Mayo. I have had one large primary tumor in my thigh. I've had three distant recurrences. I will be celebrating my 6th year survival anniversary in August. I've found much support on the sarcoma support groups on Facebook.

Jump to this post

I have regular follow ups and scans every 3-4 months. I went on an anti anxiety drug this year. That helped. I&apos;m stuck with Mayo as they have been awesome. I&apos;m feeling hopeful. My doctors have me convinced that I need to look at my disease as a chronic condition. I stay on top of it. I have a wonderful support group of family, friends, and coworkers. I don&apos;t know how people without support survive this.

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me67 | @me67 | Jul 9, 2017
In reply to @skyrage "I was diagnosed two years ago with Dermafibroprotuberans Sarcoma (dfsp) and honestly, I can't even spell..." + (show)
@skyrage

I was diagnosed two years ago with Dermafibroprotuberans Sarcoma (dfsp) and honestly, I can't even spell it correctly! It's so rare that I can't even find a doctor who knows much about it. The best thing about it is being called a "unicorn."

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Not sure if you are talking to me or not. But I had radiation for 5 weeks. They should be able to know how many weeks tp give you and the dosage. Good luck. Think positive and email friends. They can be a big help to keep your spirits up. I even wrote letters to my best friends and family telling them how much I appreciated them, etc. It was very therapeutic

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me67 | @me67 | Jul 9, 2017
In reply to @skyrage "I was diagnosed two years ago with Dermafibroprotuberans Sarcoma (dfsp) and honestly, I can't even spell..." + (show)
@skyrage

I was diagnosed two years ago with Dermafibroprotuberans Sarcoma (dfsp) and honestly, I can't even spell it correctly! It's so rare that I can't even find a doctor who knows much about it. The best thing about it is being called a "unicorn."

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Have you gone online and done some research? I would definitely let Mayo take care of you. They are the best.

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