Diagnosed with sarcoma? Let's share

I really don’t have any help for you. My breast cancer is not from the Leiomyosarcoma which is rare and uncurable cancer I’m at a stage 4 but treatable. Although it has returned to my lung radiation is being set up as we speak.
I also have stage one breast cancer and they are removing lymph nodes from under the left arm. So do you get lymphedema when they remove the lymph nodes? Do you get much swelling from it? Or pain?

My case was very similar. Private. Message me if you want to chat.

Hello. My name is Karen. have had leiomyosarcoma since 2020. I had a 8 1/2 hr surgery which I also lost the right kidney because the mass was wrapped around my kidney . 2021 It cam back in my lungs and liver. The liver I had an ablation and then I had chemo from Oct to Feb 22.
Now it is 2023 and it is back in my lungs. I will be having radiation this month to stop the nodules. AND Also I was diagnosed with breast cancer stage one. I will have a partial mastectomy and radiation in June. Staying positive and praying for a MIRCLE.

Hi Amber, welcome! You may wish to connect with Darrin in this discussion:
- Endometrial stromal sarcoma (ESS): What treatment did you get? https://connect.mayoclinic.org/discussion/ess-cancer/

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

Hi Sonny,

I experienced the same diagnosis in 2019. Stage 3 UPS almost 10 cm. It was surgically removed and I went through chemo and radiation treatments. A small recurrence in 2021, clear since.
Seek out the best doctors and hospital you can. I went to UCSF. Follow their advice, be your own advocate - seek out information, get 2nd opinions, keep yourself busy, and enjoy each day.
Blessings to you!

Hi Leroy,

I am a sarcoma survivor and peer counselor. A peer patient of mine has had HIV for a long time and also Kaposi's sarcoma. For patient confidentiality, I would have to clear providing his contact information with the peer program as well as the patient. Let me know if this is something you would like me to pursue and I would be happy to try.

Who can help me connect with someone specifically who has had HIV for over 10 years and now has kaposis-sarcoma?

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.

Hi
Just checking again if anyone out there : Has a chondrosacroma in the base of the skull . My husband first had surgery 27 years ago for removal of the tumor and then recently it returned more aggressive and had surgery again . I am so sad that our lives have changed drastically. He already had radiation after the first time . Right now we have a six month check up and MRI in July with neurosurgeon . We had one telehealth visit with an oncologist. She ordered many scans , it’s overwhelming. Since the grade was a 2/3 this time , it’s much more scary . Anyone else have this experience?