Diagnosed with sarcoma? Let's share

Hi there, I was diagnosed with my first sarcoma in July of 2020. It was removed along with my uterus. Subsequent scans of my pelvis found a different cluster of sarcomas in my stomach. So, because I also have neurofibromatosis, the only way to remove them is with a Whipple surgery. I also have pretty severe depression after watching my 19-year-old son die after a short battle with MPNST. Because he also had NF and where it was located, surgery was out. His battle with NF was horrific and "The worst case of NF the NIH has seen" according to Dr. Widemann. My other son also has NF and had bilateral optic gliomas, pseudoarthrosis of the tibia, and several benign brain tumors. He also has been diagnosed with an intellectual disability. We are hoping he gets to stay on disability. I was hoping to get disability because of my chronic pain, PTSD, ADHD, and severe obstructive sleep apnea. Both of my knees have pretty significant arthritis but the judge said no, despite years of records. Recently, they discovered an ulcer growing on one of the GISTs in my stomach. we are really struggling.

I have spots on my lungs.
I have had 4 radiations and now eribulin chemo.

I’m so sorry to hear about your Mum. My Dad has sarcoma in both of husband lungs and he’s never had radiotherapy - we’ve been told sarcomas are rare too and radiotherapy was not an option. We’ve been offered Trabectedin chemo which we know is not a cure but with the aim of stabilising the growth of tumours in the lungs. Can I ask which chemo your Mum had as I have read around the subject and there doesn’t be seem to be a lot of options in this area. We’ve been told without treatment Dad is looking at less than 12 months 😢. Take care xx

Hi there, I was diagnosed with my first sarcoma in July of 2020. It was removed along with my uterus. Subsequent scans of my pelvis found a different cluster of sarcomas in my stomach. So, because I also have neurofibromatosis, the only way to remove them is with a Whipple surgery. I also have pretty severe depression after watching my 19-year-old son die after a short battle with MPNST. Because he also had NF and where it was located, surgery was out. His battle with NF was horrific and "The worst case of NF the NIH has seen" according to Dr. Widemann. My other son also has NF and had bilateral optic gliomas, pseudoarthrosis of the tibia, and several benign brain tumors. He also has been diagnosed with an intellectual disability. We are hoping he gets to stay on disability. I was hoping to get disability because of my chronic pain, PTSD, ADHD, and severe obstructive sleep apnea. Both of my knees have pretty significant arthritis but the judge said no, despite years of records. Recently, they discovered an ulcer growing on one of the GISTs in my stomach. we are really struggling.

My husband was just diagnosed with Chondrosarcoma in his hip and pelvis. The plan is to remove his right hip, part of pelvis and leg. We are still in shock and although feel very confident in our team of Doctors, have concern that we are following with blind faith.

When I was trying to do research for my mom, it was VERY hard to find research on sarcomas. I think because they are so rare? There is only one sarcoma specialist in Indiana, and we didn't know anyone with her type of sarcoma (leiomyosarcoma). I'll be praying for you! I know this is such hard news. It was for my mom, and it was for me - her only child.

I'm here to get information and read testimonials about Sarcomas, and treatment options. My mom was diagnosed with Breast cancer in 2016. They caught it early enough to do a lumpectomy, which was successful. Nevertheless, in 2018 the Breast cancer returned. My mom opted to just have her breast removed, at which time her Oncologist encouraged her to have radiation treatments to heighten the chances of it not returning. However, she was not informed of the risks. My mom fully trusted her Dr's and went through with the radiation. All was well for some time, until mid 2021, out of nowhere her she fractured a rib. After further testing, it was discovered that my mom had developed Angiosarcoma, and informed that it was caused by the radiation treatments for the Breast cancer. We were devastated! I tried to encourage my mom to get a second opinion, concerning treatment options because it didn't make sense to me that if Angiosarcoma is very rare and they didn't know much about it, how could they be sure that Chemotherapy and more radiation is the right treatment option? Come to find out, the minute my mom started the 3 months of chemotherapy, the cancer began to spread! Not even 2 weeks after completing the chemotherapy, the cancer had spread to her liver, lungs, kidneys and bones. Then 3 months later my mom passed away. This didn't make sense to me, she went so fast, being at her side watching her suffer devastated me, and I will forever be haunted by the sound of my mom taking her last breath! My mom's battle is over, but I feel compelled to get information, education, and hear testimonies of other people's experiences with their diagnosis and treatment!? I'm so curious to know about how they are being cared for during their battle! I feel so cheated, because I know my mom would not have done radiation treatments if she knew the risk! Can someone, anyone help me understand what just happened, and why?