Diagnosed with sarcoma? Let's share

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.

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?

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

@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.

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?

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.

@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?

I am not really sure since I haven't dealt with anything similar to this before. I would like an online consultation. Any suggestions?

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?

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