Undifferentiated Pleomorphic Sarcoma: Anyone else want to share?

@dbooth, is this a new diagnosis for you? What treatment is being recommended? How are you doing?

Recently received my biopsy showing Pleomorphic Myxoid spindle cell neoplasms. Reports suggest removal but that’s all I know at this point. Just doing my own research. I have a mass right above my clavicle bone that has been slowly growing over time. Mushy feeling had an ultra sound then CT Scan and then biopsy. My doctor hasn’t received the test results my chart sent me a email. I had my biopsy on 2/5/25 I go in on the 17th for an unrelated procedure but this will definitely be addressed at that time. So new to the dx really don’t know what is next.

Being first diagnosed is such a hard and confusing place to be. I am glad you found this group. You have Sarcoma, Sarcomas are rare, you have to be seen by a Sarcoma specialist in a high volume Sarcoma Center. When my biopsy came back after an ultrasound with Sarcoma, my general practitioner immediately referred me to a Sarcoma Center. Insist on this or find one yourself. The Sarcoma Alliance has a list of all Sarcoma Centers in the U.S. They ordered more tests, a an MarI and a chest CT and a PET scan to see if the cancer was local or had spread ( this is called staging) and I had my first appointment with the Sarcoma team very soon thereafter. At this first appointment we agreed on a treatment plan and I started treatment soon after. Mine may not be a typical story: my PCP took my concern seriously and took the correct first step. I was diagnosed correctly. I saw my Sarcoma Team very soon after biopsy dx. Best wishes to you!

Yes a new diagnosis for me the doctor referred me to a surgeon. So I’m waiting to see what the next steps are and I want to see if he experience with these types of tumors. I’m doing ok a little sore sometimes around my chest area just discomfort. Tired and a little anxious.Other than that just trying to educate my self and what about you? New diagnosis, experience so far, treatment so far? What area of the body was affected?

Find a sarcoma center. Where do you live. If in Ohio there are many sarcoma center. Also get a second opinion.

Don't wait get to a sarcoma center ASAP. I had a 1.9 CM removed in October had 35 radiation treatments and feel good . CT scan in March! It was superficial and did not spread. Waiting for Dr's is very stress full. My radiologist and his team was great. Northwestern Memorial Hospital, ( sorry Mayo)

Wow! I have recently been diagnosed with pleomorphic myxoid spindle cell neoplasm. Meeting with surgeon on Monday. Just wondering how it worked out.

My husband was diagnosed with undifferentiated pleomorphic sarcoma on January 27th in his right bicep, which is huge. He starts radiation at Mayo Rochester on Monday, February 17th. Radiation 5 days a week for 5 weeks.

I was initially diagnosed with dedifferentiated retroperitoneal liposarcoma in February, 2023 after having a 22 cm, 8.5 lb tumor removed from my abdomen along with my left kidney and left adrenal gland. At first the doctors thought my cancer was kidney cancer because of the location. The pathology of the tumor said different, and the surgeon also knew once he was inside me. He also told my wife after surgery that I probably only had 6 - 9 months to live.

My oncologist recommended 6 rounds of AIM chemotherapy based on studies/data that was over 15 years old saying that there was no more recent studies done on this type of cancer. I went through the first round of AIM which landed me in the hospital for 8 days with full body sepsis and neutropenia which did damage to my remaining kidney. After this experience and a couple dreams while in the hospital which told me I needed to find a different treatment approach I told my oncologist I would not proceed with AIM as I believed it would kill me. He suggested continuing with AIM, but only delaying the treatment by a week, and having it done inpatient. After a bit of discussion he did accept my decision and wished me well.

I have since been undergoing alternative integrated treatment which has worked for me so far, but I am now getting lab results indicating that there is evidence of disease. This test is Guardant 360 which has my cancer classified as pleomorphic sarcoma. I am having further blood work done and will most likely have a PET scan next month.

The alternative integrated treatment I have been receiving started with insulin potentiated therapy (IPT) which is a low dose chemotherapy designed to target only fast growing cancer cells, repurposed medication proven to attack cancer stem cells (slow growing cancer cells which develop later into tumors when environmental conditions allow), and supplements to build my immune system to allow it to naturally fight cancer cells.

This has been a long couple years with lots of fatigue, but I am living each day thanking God for what he has blessed me with.

I am being treated for same at MSKCC. Just curious to see if you chose it for your care.
How are you doing today?