Diagnosed with sarcoma? Let's share

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

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?

Scan came back with no evidence of metastatic disease. Consult with cosmetic surgeon moved up to tomorrow. Should have a surgical date soon.

This sounds promising and that you are in good hands. I'll be interested in hearing about next steps after the scan. First I wish you a sound sleep tonight.

The meeting went well. While still greatly concerned, I don't have the level of fear that I had when I left the dermatologist. I have a CT scan of my lungs tomorrow. The oncologist believes we caught this fairly early. She has successfully treated very similar sarcomas and sees nothing out of the ordinary with mine. We will schedule surgery quickly after the scan. She indicated that will include a 2 cm margin. No radiation or chemo is anticipated, but of course, that could change with findings.

@wandrew, how did the meeting go with the surgical oncologist? Are you considering a second opinion? What's the treatment plan?

Yes my Dad has this now - he had a skin tag taken off his back which was supposedly benign until he has been found to have lung metastases and it’s been rediagnosed as undifferentiated pleomorphic sarcoma - please let me know you get on. Dad is starting trabectadin chemo in 2 weeks. Make sure you have regular CT as this is how Dads has spread - he had no follow up as they thought it was just a benign skin tag - Good Luck x

My mom had a different sarcoma. I remember how scary the waiting phase was. I'll be praying for you!

I'll be praying for you!

Our daughter has had a clear cell sarcoma mass removed from the palm of her hand. She had surgery to remove the mass, then painful radiation for 5 weeks. She will lose her 3 middle fingers next week. She is a mechanic & an athlete. She is worried about her quality of life going forward. Will she have any chance to work in her field. Will she be able to continue her athletic pursuits (2 time Ironman competitor).