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.

@paddypiob12

I Will Pray for a miracle. Pray to Jesus for me also. I am suffering.

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Thank you, and may God bless you with a miracle, and be blessed with a healthy wonderful life full of love. ♥️

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@paddypiob12

I was just diagnosed with Sarcoma in my right abdomen toward the back. I don't know what to share. I just found out don't know the stage yet. CT scan of the Chest to see if it spread on June 1. Biopsy I hope soon but not scheduled yet.
They found it because I thought it was a reoccurring inguinal hernia. I am putting all my faith in Christ.

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I found what turned out to be liposarcoma tumors in my left groin. I had two tumors removed.
First tiumor was cancer, second was not. I have had 4 tumors removed from my left groin between 2010-2019. MD Anderson is watching a 5th tumor which did not grow last year. My next appointment is this October as I am on a yearly look and see. If you find out you have liposarcoma find out what kind as there are 4-subtypes. Prayers coming your way.

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@acg1979

Hello everyone! I’ve been trying to find a Sarcoma support group for years! So thank you @colleenyoung ! I was diagnosed with Low-Grade Endometrial Stromal Sarcoma following a Myomectomy in which the 15cm tumor had been manually morcellated in November 2019. In an attempt to coverup what the surgeon had done, they clinically staged me as 1B prior to the hysterectomy a month later, by which point my entire Uterus was tumor. 100% myometrial invasion. Standard protocol would be to Surgically Stage, yet this corrupt hospital network (the obgyn, pathology, oncology, records, “patient advocacy” office… all united to ensure that my own health information was kept from me) told me I was still 1B. It took me MONTHS to piece it all together. The day I did was the most terrifying day of my life, I’d say. To have this rare, aggressive cancer and feel more afraid of the doctors than I was of the cancer. I thought if they could be that devoid of ethics and morals AND seemingly VERY determined to hide their dirty laundry aka Me, my life was in danger from both the cancer AND physicians. I felt so violated, so dehumanized. We specifically agreed to do the surgery, abdominally, because of how important it was to remove it “en bloc”. He was supposed to remove the uterus if he couldn’t get it out in one piece. I was 40 and had never pined for children. Then, once I am unconscious, he decides that saving the uterus should be more important to me. Possibly, he figured I didn’t know my own mind. Possibly, I was a science experiment. Possibly, he’s a Sociopath. But what is scarier than what his motivations might’ve been, was, how quickly the cover-up began. That very day they knew. I now receive treatment at a cancer center about 2 hours away. I am working on the fear and distrust I have of Hospitals and physicians, but I feel forever changed by that experience. Other doctors, even at my new cancer center, would stick up for him, and say that because Sarcomas are so rare, slicing it into thin pieces with a scalpel was a mistake that any doctor could’ve made. These doctors had never met the man, who understand the concept of ‘Informed Consent’, I’d hope, would say this to me, compounding my trauma by making defensive comments for the man (and Hospital Network) who, as far as I was concerned, had violated my unconscious body as well as many Medical Codes of Ethics. It made no sense. It was terrifying to think that doctors across cities and states that have never even met, would unite against a patient. Has anyone else here had a Uterine Sarcoma morcellated? How were you treated/communicated with? Honesty and acknowledgement should be THE ONLY way Hospitals address Medical mistakes. I’d be a different person today if my humanity had been acknowledged…
So far, treatment-wise, I have had 3 surgeries, take Anastrozole 1mg daily, and get CT scans w/contrast every 3 months.

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You have been through so much and I admire your courage and strength. Sarcomas are so rare . I take my husband to the University of Miami. I am trying so hard to connect with anyone who has Chrondrosacroma of the skull. Have you ever come across anyone with that ? We already had two surgeries and now it has has come back more aggressive and he has already had radiation the first time . We see an oncologist who specializes in Sacromas on June 20th . I am very worried and scared 😢

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@bicycle3

Hard part for me is lack of appetite and loss of taste and fatigue overtakes my days.

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Hi @bicycle3, you were on my mind today and I was wondering how you are doing. How is chemo going and managing the side effects of loss of taste and fatigue?

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@marysue1953

Rhabdomyosarcoma Cancer in right thigh. Has anyone out there had this type?

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Hi @marysue1953, I believe @mp01 also has the same type of sarcoma - rhabdomyosarcoma.

When were you diagnosed? What treatments?

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@lb21ann

I went to a general surgeon for a mass/bump on the back of my upper left shoulder. He believed it to be a harmless lipoma & it was elective to remove it. I chose to remove & he ordered an ultrasound. It was removed as outpatient. The pathology took extra time yo come back. The doctors front desk staff called telling me it was a benign lipoma sarcoma & not to Google it due to it would scare me. They said he got it all but I would need to return every 6 months for 2 years. I returned February 2023. He stopped in the room for a short time and took a quick look. I don’t understand the term benign lipoma sarcoma. I assume it means it’s not cancerous. But it’s a sarcoma? Any thoughts on the diagnosis would be appreciated. Thank you

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@lb21ann, I not a doctor, but my understanding that a lipoma is a non cancerous (benign) lump that forms due to an overgrowth of fat cells. Lipomas are not cancer. Cancerous tumours of the fat cells are called liposarcomas.

It sounds like you might need to get clarification if you have a lipoma or lipsarcoma. Or a second opinion.

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@chris1848

It's been just over a year since I finished treatment for Ewings Sarcoma and they said there was no evidence of disease. I'm still constantly anxious that it's going to come back. Especially since with my age group and location, the overall 5-year rate was relatively low with a significant chance of recurrence. I remember when they initially found it I could not stop overanalyzing and researching. I spent countless hours looking at studies and articles but all that did was make me more anxious. How do you deal with all the anxiety?

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@chris1848, worrying about cancer returning can drive one crazy, especially when looking at statistical odds and over-analyzing. Sounds like it might be time to focus on NED (no evidence of disease).

It can also help to talk with others. You might appreciate this discussion:
- Ewing's Sarcoma: Where are you in your journey? https://connect.mayoclinic.org/discussion/ewings-sarcoma-1/

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@eyrar

Hi! I in my early 20s and being treated for sarcoma at Mayo (a tenosynovial giant cell tumor). It’s certainly overwhelming, so I’m happy to have found this forum!

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Hey Anna, you might also wish to follow the
- Adolescent & Young Adult (AYA) Cancer Support Group https://connect.mayoclinic.org/group/adolescent-young-adult-aya-cancer/

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Anyone on Trabectadin (Yondelis) chemo for their sarcoma?

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I was diagnosed at the end of February 2023. I had my femur, knee replaced. I also had part of my tibia redone.
I have had a lot of post operative issues.
I will admit that I am having mental and emotional issues with my new norm. I'm having trouble dealing with what my life will be from now on
I've always been the one people leaned on, it's hard for me to now realize that I have to lean on people. That I'm not the same person. That there are both physical and mental changes in my life.
I know I need help. That I need to talk to someone. I'm just not sure who.

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