Diagnosed with sarcoma? Let's share

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.

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.

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

Hello everyone, my sister was diagnosed with Alveolar soft part sarcoma. She’s only 21 years old and just had her first baby in November 2022. She will be having surgery this Friday May 26, and will be having a CT scan for her lungs to make sure cancer has not spread from primary. We are prying and hopping for the best. This has been hard for her especially now that she just has her baby. We are prying for a miracle. Has anyone else being diagnosed with this rare sarcoma ? If so, after surgery what was the outcome of your treatment? I can’t find a lot of information online or what to expect after surgery?? Or if there’s any survivors that have been cancer free ?? Thank you so much for your time. God bless everyone.

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!

I currently am a 69 year old female. I surgery leiomyosarcoma in Feb 2020. It was a 8 1/2 hr surgery which was wrapped around my right kidney which they removed at UW Madison. One year later it went to my liver which they did an ablation. Then it went to my lung and I was doing chemo from Oct 2021 to Feb. 2022. This week May 2023 I started doing radiation on my lung for small tumors. The cancer is a stage four. Treatable but not curable. They keep it at bay for about a year and it comes back.. hopefully they will find something to cure this sarcoma.