Diagnosed with sarcoma? Let's share
Because sarcomas are rare, I would like to start a conversation to help connect people living with sarcoma or caring for someone with sarcoma.
As you know, sarcoma is the general term for a broad group of cancers that begin in the bones and in the connective or soft tissues (soft tissue sarcoma). There are many different types and sub-types of sarcomas, for example: angiosarcoma, chondrosarcoma, Ewing’s sarcoma, fibrosarcoma, gastrointestinal stromal tumor (GIST), Kaposi's sarcoma, leiomyosarcoma, liposarcoma, malignant peripheral nerve sheath tumor, osteosarcoma, pleomorphic sarcoma, rhabdomyosarcoma, synovial sarcoma and more.
Let's get to know one another. Why not start by introducing yourself? What type of sarcoma have you been diagnosed with?
Interested in more discussions like this? Go to the Sarcoma Support Group.
I had surgery in 2001, 2020 and 2021.
The chemo was in 2020 along with 15 radiations on calcified liposarcoma on hip. Chemo was once a month for 4 months. then I broke my tibia so took a few months off.
Now I finished4 radiations on chest and 2 chemos.
The chemo does not show improvement so new erubilin is prescribed. Waiting for insurance approval.
In the mean time I have applied to see doc at Sloan Kettering, 6 hours away.
Waiting for answer.
I have applied to Sloan Kettering for another opinion. I pray it is not too late for a new diagnosis.
Ah thank you!!
I am doing alright now and have almost recovered from the operation. I'll make sure to let you know in the future about progresses n stuff
It might be helpful to look at some of my suggestions in the post above, https://connect.mayoclinic.org/comment/795026/ such as the American Cancer Society to find a specialist in liposarcoma, Mayo Clinic or another research-oriented medical institution.
Will you let me know how you are doing?
I am not really sure since I haven't dealt with anything similar to this before. I would like an online consultation. Any suggestions?
@barman,
I agree, when you have a rare diagnosis, you often need to go outside of your local area in order to find the best treatment possible.
What are your options for a second opinion?
Thank you. Well, I have actually considered second opinions. Also, we are currently seeking for treatment for this nearby, but since this thing is extremely rare, we are considering to be just a bit more sure about this stuff for further treatment.
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.