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

@truk182 I appreciate the further detail you provided. I also understand the withdrawal phenomenon when your speech is affected. I was diagnosed with a paralyzed vocal cord several years ago. When I talked it sounded like a permanent case of laryngitis – I was always very tired from talking because I had just one vocal cord doing all the work, and I was exhausted from the effort. I began to talk less and less. After having surgery to provide “a fix” for the vocal cord, everything got better. I would encourage you to keep talking. Perhaps a second opinion from another speech therapist would be helpful as well. Speech therapists often use different methods to treat speech problems. Also, I just posted, under the cerebrovascular diseases’ category, something about Aphasia, https://connect.mayoclinic.org/discussion/june-is-national-aphasia-month/. While this term does not exactly apply to your situation, you might take a look at it and see if you find any of the thoughts in the post helpful. Have you ever recorded your voice to see just how you really sound to others? Teresa

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My name’s is Helen and I finally have been diagnosed with Dermatofibrosarcoma Protuberans. My turnour is very large measuring 6″x4″ and approx 1 1/2″ bubbled out. It is located at the bap of my neck with the top a fingers width from the base of my skull. For 3 1/2 yrs I’ve been misdiagonesed with a keloid and have been receiving corazone shots every three weeks. My tumour has easily tripled since the injections started. Once properly diagnosed things moved quickly. My results from two deep biopsies came back positive June 4 this year and I’m waiting a surgery date in Toronto, ON. Hoping for the best at this point. Thanks for the connection !!

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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. 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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@juzme88

My name’s is Helen and I finally have been diagnosed with Dermatofibrosarcoma Protuberans. My turnour is very large measuring 6″x4″ and approx 1 1/2″ bubbled out. It is located at the bap of my neck with the top a fingers width from the base of my skull. For 3 1/2 yrs I’ve been misdiagonesed with a keloid and have been receiving corazone shots every three weeks. My tumour has easily tripled since the injections started. Once properly diagnosed things moved quickly. My results from two deep biopsies came back positive June 4 this year and I’m waiting a surgery date in Toronto, ON. Hoping for the best at this point. Thanks for the connection !!

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Hello Helen and sorry to hear of the misunderstanding leading to delay in treatment, and sad to say not considering dfsp as a first response is surprisingly common among an uncommon tumour type. There are several variants of dfsp. Do you know which you have? For a larger tumour, has there been any discussion of preliminary course of Imatinib Mesylate (Gleevec) with a view to reduction in size pre surgery? Are you having MOHS surgery or Wide Excision? Have you planned any scans to attempt to establish the size of the main tumour, and or eliminate bone invasion?

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@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 Hello Kathy: I’m a volunteer mentor with Mayo Connect and I’d like to welcome you to this online patient support network. We are so glad that you have joined us. I especially appreciate your sharing about the help you received from Mayo Clinic in getting a diagnosis, that is great to hear. Congratulations as well on celebrating your 6th year survival anniversary. I’m glad to know that you have found support. Support, either in person or online is so important when you are dealing with a chronic illness. How are you feeling these days? Do you go to Mayo for periodic check-ups? Teresa

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@juzme88

My name’s is Helen and I finally have been diagnosed with Dermatofibrosarcoma Protuberans. My turnour is very large measuring 6″x4″ and approx 1 1/2″ bubbled out. It is located at the bap of my neck with the top a fingers width from the base of my skull. For 3 1/2 yrs I’ve been misdiagonesed with a keloid and have been receiving corazone shots every three weeks. My tumour has easily tripled since the injections started. Once properly diagnosed things moved quickly. My results from two deep biopsies came back positive June 4 this year and I’m waiting a surgery date in Toronto, ON. Hoping for the best at this point. Thanks for the connection !!

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I had a MRI and CT scan last week. The discussion was for Wide Excision due to the size of the tumour. Unfortunately the dermatologist I was referred to 3 1/2 yrs ago said it was a keloid, He retired 2 yrs later and with no other dermatologist in Thunder Bay, my family doctor continued the injections, but after a short period she stated it didn’t look like a keloid but with no one to send me to she started the 1 1/2 yr search to find another dermatologist who would see me in Toronto. The referral system here takes forever and a yr later I finally seen him and he had the ball moving extremely swiftly. At this point I do not know what type, I was told a Pathologist would be involved once I’m in Toronto. My only visit there so far involved the Sarcoma Clinic at Princess Margret Hospital and then two surgeons from the Head and Neck Clinic at the General Hospital.

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In October of 2016, after a 3 week vacation hiking the National Parks, I discovered that my right leg was swollen with a rash and redness. I went to my primary doctor who suggested I go and see if I had a blood clot. No blood clots. I proceeded to see a podiatrist thinking I had broken or sprain my foot. ( I have a high tolerance for pain). I had an EKG and a vein mapping done. I had CT scan that showed a tumor in my pelvic area. I even had a small surgery from a DR.James. Cooper that was unnecessary. He had told me that he could open me up and find out what this tumor was. He misled us. He told me a needle biopsy would only be a 50/50 chance of showing what this tumor was. Come to find out – he was wrong. After the minor surgery, the doctor told me he could not see the tumor and the biopsy of one lymph node was negative. I decided to have an MRI and again the tumor showed up in the pelvic area.
I finally broke down and went to a cancer doctor who recommended a needle biopsy. This is when they determined that it was a pleormorphic sarcoma. I knew NOTHING about sarcomas and started researching. After going to another surgeon and a vascular surgeon, I decided that I did not want to create my ow team of doctors and that I needed radiation when I was having the tumor taken out. The only ones to do this type of radiation is Mayo. It so happened that this second surgeon could facilitate to get me to Mayo. We decided to take this route.

I feel very fortunate that I was admitted to Mayo very quickly. It was determined that the sarcoma had started in the soft tissue and was leiomyosarcoma, I had to redo my research. Because my tumor was under 5 cm. I had a good chance of making it. I immediately felt that everything was going to turn out good and I keep my spirits up the whole time. I shared my thoughts with a lot of my friends and family on Facebook, thus the constant positive feedback.

I took 5 weeks of radiation through Mayo Clinic. (25 treatments in two different areas of my hip). I can tell you that the making of the mask for my radiation was the worse part, but otherwise things were great. I went to the gym 3 times a week and rode the bike for about 40 minutes each time. It helped with the fatigue. I only felt tired one day and after the gym, it went away. I have a slight discolor in the area of radiation. Still I kept my spirits high.

I had my surgery on June 6, 2017. I am 67 1/2 years old. I was in surgery 8.5 hours and recovery for 3 hours. The radiation had killed 20% of the tumor. I had 8 doctors in the operating room with me. The surgeon was able to take the small feelers from an artery and pul it from my iliac vein. The tumor scooped out nicely with ‘clean’ margins. It had grown from 3.5 cm. to 5.2 cm in that small amount of time. I am glad that I did not know that. The vascular surgeon was able to take the tumor away from the main vein and repair the vein. No one knew what they would actually find once they opened me up. They thought I would have to have the main iliac vein cut and grafted from another vein, but I was fortunate that we didn’t have to have that done.

I was in the hospital for 5 days. I was on the road to recovery when 5 days later because I was NOT given blood thinners, I was back in the hospital for blood clots. I stayed in the hospital for another 3 days. The hospital stay was not that great. The fact that I ended up with blood clots put me back quite a bit for a fast recovery. I got rid of the pain pills in 10 days (much too long to be on them, but Oxycodene is very addicting. I started taking 500 mg of Tylenol for 4 or 5 days and stopped that. The recovery is slow because of these blood clots, but I am surviving.

On the 18th of this month I will be seeing my surgeon to get his feedback on how I am doing. I will have a CT scan of the pelvic and abdomen to see how the clots are doing. I will have an MRI to keep an eye on the sarcoma coming back. In fact, for the first year, I will have to have an MRI every 3 months. I do not have to take chemotherapy although I was offered it. It could work or it wouldn’t. I decided I wanted the quality of life back I had before this surgery and chemo would not offer that, plus it is not guaranteed that it will keep the sarcoma away. I figure I will take my chances and I feel confident that it will not come back. I will be monitored for 5 years. Once the clots are going, i will ask to get off of the blood thinners.

I feel the doctors at Mayo Clinic are the best and if I had not gone to them, I would not have the outcome that I do have. I believe in a lot of personal research to understand what you do have and the research behind it. A person has to think for themselves with the doctors help. It has been a month since my surgery and my leg is still swollen, and I still have the clots, but every day I see an improvement. I feel fortunate to be alive and I am so glad that I went to Mayo for this surgery. My suggestion is to stay positive at all times. It really does help.

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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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@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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That’s what I have, only diagnosed 6ish weeks ago, waiting on a surgery date. Mine is very large, 6″ x 4″ how did your treatment go? was it just surgery or radiation as well?

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@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.

Liked by Biceto

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@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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@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'm stuck with Mayo as they have been awesome. I'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't know how people without support survive this.

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@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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@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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