Undifferentiated Pleomorphic Sarcoma

@pilgrim1, you are not alone in finding MRIs challenging. You might appreciate the tips shared in this discussion:
- Do you have a coping mechanism to get through an MRI?
https://connect.mayoclinic.org/discussion/do-you-have-a-coping-mechanism-to-get-through-an-mri/
What tips might you have for others about physical therapy after treatment? What helped you succeed?

Thanks so much @hopeful33250 ! I am having scans every 3-4 months right now (MRI and CT). The MRIs are the most dreaded scans for me - they last about 90 minutes. After 2 years, I can move to having scans twice a year. After 5 years, I can have them annually until year 10.

Hello @pilgrim1 and welcome to Mayo Connect. Your post about persistence in finding a problem as well as seeking the best medical attention possible is a great example of advocating for yourself.

I'm sure you are glad that you followed your instincts to get the tumor removed and to have a biopsy. You make a great case for seeking out the best medical follow up possible. I'm glad to hear that Mayo Clinic was an important part of your recovery.

Will you be having follow-ups in the future?

I was diagnosed with UPS in April 2023. I had noticed a lump forming on my upper left arm between my tricep and my elbow. My local doctor as well as a radiologist told me it was only a lipoma - nothing to be concerned about. The lump continued growing and bruising my skin - but it never was painful. Finally, some time in March, I grew tired of looking at it, so I booked an appointment with a local surgeon to remove it. It was only after he ordered a biopsy of the tumor that we found out it was Sarcoma.
My sister-in-law is a nurse in Nashville, TN, and she insisted that I go to a sarcoma research facility for treatment. That's how I ended up going to Mayo Clinic in Rochester, MN. I did 3 weeks of radiation in June, and we went back in late July for surgery to get clear margins. I had a skin graft to cover the whole that was cut in my upper arm. After 10 1/2 weeks at home (without driving) wearing a 30 degree splint, I was finally given the green light for physical therapy. Yayyy!! It took about 2 months to get my arm flexibility and decent strength back. I am so thankful to God for the care I received at Mayo Clinic. I am pretty much back to normal flexibility and strength now.

I have it! It was localized and mostly removed but I meet with the radiologist and Dr later this week. I don't have much else to say because the Drs don't either! My concern is how often does it come back and how fast can it spread.

@jbbj, welcome to Mayo Clinic Connect, a place to meet other patients and family caregivers living with similar health issues.

It sounds, however, like you are looking for an expert review with Mayo Clinic specialists. To seek a second opinion at Mayo Clinic, you can start here: http://mayocl.in/1mtmR63

It must be so hard to see you mom dealing with the side effects of treatment. When will she start immunotherapy with Pembrolizumab? How are you doing?

Hi,
My mother dignosis with UPS metastatic, she has pain in left hand, then left leg, after 2 month with many test & 4 biopsy result show result as UPS, unidentified primary sarcomatoid carcinoma.
1 chemo Paclitaxel-120 mg + Inj carboplatin 200mg further stopped as there was no CK biomarker positive.
10 radiotherapy Given on Left clavicle bone, L4, L5 Left Hemipelvis with 3DCRT technique on LINAC
to a total dose of 30Gy/10.
Futher 1 month pazopanib 400mg given but lot of side effects it was.
NGS sarcoma Panel-Negative, only gene SDHB-Biomarker positive.
Last hope & try for PEMBROLIZUMAB -200mg suggested.
Request for expert opnion review

I was first diagnosed with undifferentiated liposarcoma in my upper right arm almost 1 year ago. Then, once i started going to the Sarcoma center for treatment, my diagnosis was changed to UPS. I started the routine of CT scans every 3 months and MRI's every 6 months in January 2024. In June we found another lipoma tumor in my elbow of the same arm, but a second dedicated MRI proved that it is benign. It scares me because it wasn't there a year ago, when I found the first tumor. I am trying to not live my life in fear, but I am terrified! Is there anyone here who has made past 5 years with no recurrance?

Well said, @pegstermom2. "Scary and always on my mind but living everyday to it's fullest."

What advice would you offer to someone newly diagnosed with nndifferentiated pleomorphic sarcoma (UPS)? Or, in other words, what did you wish you had known?

I was diagnosed with UPS 1.5 years ago. Had radiation treatment then surgery for removal. The tumor was in my right gluteal. It was completely encapsulated and bargains were clear. CT and MRI for the first year every 3 months, all clear. Now testing every 6 months.
Scary and always on my mind but living everyday to it's fullest.