Diagnosed with sarcoma? Let's share

hi @raeangel319, welcome to Connect. I'd like to introduce you to @juzme88 and @biceto, both of whom have dermatofibrosarcoma protuberans (DFSP).

Should you decide to call Mayo Clinic for a second opinion here are the contact numbers http://mayocl.in/1mtmR63. If you have any questions about Mayo expertise and care, feel free to ask questions to @christine19 @jeffk and @deborahe. While they don't have the same type of sarcoma, they were all treated by sarcoma specialists at Mayo in MN.

Raeangel, when were you diagnosed? May I ask where the tumor or lesion is located?

Hi, Sorry to hear of your condition. If you are not putting yourself at risk by delaying surgery to do so, a second opinion can give you another perspective that may reinforce your current course of action or offer other options, and I think it's especially important with rare cancers. It's worth a phone call to Mayo. All the best to you on this journey.

Hello. I have fibrosarcomatous dermatofibroma protuberans (fs-dfsp). I'm currently scheduled for surgery next week, but just tonight we are contemplating calling Mayo Clinic Minnesota for a second opinion.

Deb, it has been sometime and I was thinking of you and curious as to the progress you have been making. I continue to be blessed and am enjoying my grandkids! Look forward to hearing from you. Jeff

So, so sorry for your son. I will keep him & your family in my prayers. Hopefully, the chemo & treatments will be successful & he’ll be able to resume a more ‘normal’ life (...although, life with/after cancer is not normal—I guess it’s the ‘new normal’). Try to focus on positive thoughts.

Hello. My son was diagnosed with synovial sarcoma in 2017 just two weeks before his 21st birthday. He had proton therapy and major thoracic surgery 6 weeks later. Surgeons removed two ribs, part of his lower lobe, and the mass that was growing near near it all. He had to take a sabbatical for a semester from college, but he returned to school and graduated on schedule. He had just started working two weeks before at a job in his field, when we received the news that his cancer had metastasized. He is only 23. Mayo immediately began the process of getting his chemo started. We have now completed two cycles. He has no appetite and is very nauseous. We are devastated by this all. He is trying so hard to be strong. 5 days after his first cycle, he went back to work. I know he is hoping he will be able to do the same this time, but I’m not sure.

I'm on cycle 41, Every six week I have a blood draw, meet with Dr. Attia review my results and have my chemo. Since the start of treatment,I have been on Doxial. The first 5 treatments were difficult. After that I had little or no side affects. I'm lucky I live about 20 minutes from Mayo Jacksonville Campus.

Welcome, @fasthealer. There are a few members talking about UPS here:
- Undifferentiated Pleomorphic Sarcoma https://connect.mayoclinic.org/discussion/sarcoma-256d3d/

What type of chemo are you now on and how frequently? Do you have to travel far to get chemo treatments?

Vivian, @suzanneb's husband also had a Ewing's-like sarcoma.

Vivian, Suzanne, @kristennursepatient @suzanneb @zaruhi and @erikahamilton, I'd like to suggest that one of you start a new discussion specifically about Ewing's sarcoma. What do you think?
Here's how:
1. Go to the Cancer group https://connect.mayoclinic.org/group/cancer/
2. Click START A DISCUSSION
3. Enter a title and message.
4. Click CREATE DISCUSSION.

I am also being treated by Dr Attia at Jacksonville for UPS (undifferentiated pleomorphic sarcoma). I was diagnosed 2 years ago and have been through radiation and surgery (at another hospital) and now on my second type of chemo with Mayo. UPS first appeared in my left calf and I had to have the soleus muscle removed. It has since metastasized in the lungs, but the treatment I am receiving now seems to be keeping it small, and not spreading. I choose to remain hopeful and busy. 😁