Diagnosed with sarcoma? Let's share

I just want to sleep and drink my juice

Thank you for following up with me. I have been on the fence about it. I have been thinking about getting a 2nd opinion.

Anyone been diagnosed with "Low Grade Fibromyxoid Sarcoma"?

I have radiation induced Angiosarcoma of the breast. Surgery in 2019 and 2021. In March of 2023 it metastasized to the lung. It’s been stressful to say the least. Being a rare cancer, it’s been hard to connect with others with this type of cancer. I am currently taking paxitaxol, used for other cancers, but having sensitivities to it. The first one was severe and was very traumatizing. More Benadryl was given and things settled. Treatments 2,3,4 and 5 were all good but on the 6th one I had another reaction which was scary but less severe. The only difference with number 6 treatment was that the premeds were given in a different order.........hydrocortisone then dexomethazone. The other times the dexomethazone was first. Does anyone know if that can make a difference, Maybe to my body it does. I will see my Dr before next treatment, so that will definitely be part of our conversation. Just wondering about others with a sensitivity to paxlitaxol and their experiences, which I understand is common. Thank you for any input you may have. One day at a time.

Hi
My Dad is on Trabectadin for lung mets (spread from UPS on skin) they give him 20mins dexamethasone prior to the IV Trabectadin and then 2 days of dexamethasone tablets to follow (4 per day). He’s on pause at the mo die to low neutrophils but I’ll take a look at paxitaxol in case we need a different option so thanks for this - best of luck to you, you sound like you’ve been through tough times already so stay strong xx

I had Angiosarcoma on my upper chest, near collar bone, several years ago. No radiation or any kind of chemo, just surgery. I have had numerous cancers and a wide variety of type of cancers.
(Bad genes!) I never have had anything but surgery for all my cancers.
So far, it has not shown up again, but I am plagued by numerous skin cancers and another Melanoma. I am so sorry you are going thru such trauma, especially on your face, that's really tough. (My nose is starting to look like a boxer's!)
Stay tough.

Thank you. Interesting, I have also had 3 other skin cancers on my face over the years. Only surgical removal for them.( They were very small and found early due to my diligent dermatologist.

Best of luck to your dad, we can’t give up hope. Thankful for these sites where you have support from others experiencing similar circumstances. One day at a time!

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?

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.