Diagnosed with sarcoma? Let's share

Hello @barman and welcome to Mayo Connect. You are wise to be looking for answers for liposarcoma. I would encourage you to look for a well-known cancer center in your area. If there is not one nearby, check and see if there is one where you can get a virtual consultation.

Mayo Clinic has three campuses in Minnesota, Florida and Arizona. If you want to see about an appointment, here is link you can use, http://mayocl.in/1mtmR63.

If you are not close to a Mayo facility, you might check out university medical schools in your area. These facilities tend to be research-oriented and thereby have the latest treatments for hard-to-treat health issues.

Finally, the American Cancer Society might be able to refer you to a liposarcoma specialist in your area. Here is a link to their website https://www.cancer.org/.

Have you considered a second opinion?

@bicycle3 glad to know that it is stable now. I hope you are doing well. How are you now? Can we ask how many times have you had surgeries incase of this? We would like it if you would please inform us that after how many days have you had chemotherapy after surgery. Also, what was the gap between 2 or 3 surgeries? How long has the treatment been going on after diagnosis? We would be grateful if you would elaborate. We're really caught in a mess currently, for which we're so.. I don't know, curious about stuff which we thought would never bother us? :/ Sorry for the large amount of questions, but we would be grateful if you would provide us with information so that we can get out of this current mess.

I have had chemo and radiation.
Large calcified tumor in hip seems stable.
I have many others to be addressed after 3 surgeries.

Greetings.
I have been recently diagonised with dedifferentiated liposarcoma (which was found out through biopsy after removal of tumor). The surgery is already done and I'm currently recovering from it. The retroperitoneal tumor has been removed, but it has been noticed that there is still some residual left, and the doctors said that since it's situated a large area, radiation wouldn't work. Treatment through Chemotherapy is still not confirmed. They have been saying that it needs to be operated on over and over a numerous amount of times, and I have been considering alternate therapies and methods. Any suggestions on what path to take? Is there a treatment of such kind of liposarcoma without any other surgery methods?

Hi

My name is Jeff and i am recovering from a complete left pneumonectomy where they removed my left lung due to lung cancer. They wanted to take out a large tumor originally thought to be adenocarcinome but after removal they found the tumor was a mixture of sarcomatoid carcinoma and adenocarcinoma. It has also gotten into some lymph nodes. I’m not aware of effective treatments for sarcomatoid carcinoma cancer and I’m considering alternative therapies.

Hello,I'm Sarah. My mother was diagnosed with uterine leiomyosarcoma 6cm after hysterectomy, then radiation was done chemo was also suggested but PET ct was all clear without any abnormal mitotic activity so oncologist allowed to do only radiotherapy. Then followup CT were also clear without any metastasis. After 3 months she started coughing blood upon which CT was done again and soft nodules in abdominal region and lower lobe of lungs were identified with clear margins. Lung Trucut Biopsy was done and it was metastatic leiomyosarcoma. It was shocking news for all of us . Now she's having chemotherapy. And her oncologist is very hopeful that it can be diluted as it was diagnosed very early.
If there's anyone with similar experience please share it with me.

Hello Lisa,
I am so glad your son is okay. What a horrific decision to have to make at 19. What a brave young man to go through that.
I am so happy he has not had a reoccurrence.
Blessings,
Irene

Hello my name is Irene. I am the 1 in a million women who was diagnosed with an angiosarcoma caused more than likely by radiation from an earlier breast cancer radiation treatment. My breast cancer was about 14 years ago, so this was a big surprise. I was diagnosed with the angiosarcoma 2 years ago and had it removed from under my arm near the radiated area. Luckily I found it early enough however the doctors did remove parts of 2 ribs just to be careful. I then went through 6 months of hard chemo, all different types. Now, 2 years later another spot has appeared on the skin. It's very little and hasn't spread. I will go back to the operating room on Monday. My doctor told me it's not unusual that this can appear again on the scar of the last surgery. He has a colleague that was operated on 3 times for returning angiosarcoma and then it never came back, so I am so hopeful!
The crazy thing is I went through genetic testing a few years back and everything came back negative, but my father had a leiomyosarcoma. He had also received radiation and 12 years later was diagnosed with that. For this to be a rare cancer that has shown up twice in my family is leading me to believe maybe it is genetic, I am not sure.
I pray everyday I can beat this and so far God has put me in the right place to have it treated quickly each time.

hello, my name is lisa. my son was diagnosed with synovial sarcoma in 1998. it was in his foot. he had previously had a sports injury in the foot. a large lump appeared and the rest is history. we took him to a university hospital and they recommended amputation of the foot. what a horrible decision for him. he was just 19 years old. when the amputation was done the dr said all the parameters seemed to be intact and gave him the chemo options. he opted out of the chemo with the option of very close follow ups. he has never had a reoccurance but they did say that if it did happen it would more than likely be in the lungs. it has been a long time and i thank the drs and the good Lord for his life.

Many tearful thx.