Undifferentiated Pleomorphic Sarcoma: Anyone else want to share?

Yes,
I was very lucky. Retroperitoneal I believe simply means back of the stomach. I don't have much advice. I had the surgery want went on living my life. I did not realize it could reoccurr perhaps ignorance is bliss. It was a pleomorphic liposarcoma tumor, I am guessing that is the same thing. I have heard them called sarcomas but I think the liposarcomas are more fatty. I am revisiting the entire experience again now and I may have handled it better back then. It took me awhile to recover. Where is your tumor and what size? Mine was 9 pounds by the time they removed it so the surgery was fairly extensive. They did not however have to take out any other organs. How aggressive was your surgery? Give your self time to heal and rest is my best advice. Wish you the best of luck.

Hi and I would be happy to get 16 years cancer free!! I am not familiar with the word retroperitineal tumor. Is that the same as what I am dealing with (undifferentiated plemophoric sarcoma?

Any advice is very much welcome. Surgery went well and hope to start radiation after Thanksgiving.

Thanks for reaching out and I pray for you to get better!

I had a pleomorphic retroperitineal tumor 16 years ago. They treated me first with chemo to try and shrink the tumor before they removed it. I have been cancer free for 16 years. It just returned. I would be glad to share any information I might have that would be helpful for you

I was told that there is Maybe, 1 millimeter near my muscle and that I will need 7 weeks of radiation. the radiologist is a

great guy as well as his nurses! Surgeon said looks good and he will see me in 3 months and do a CT scan before I see him. Both were pretty positive and the surgeon said that need to make sure it doesn’t go to my lungs but radiologist feels that it’s a low chance that it will return. Not sure what the chances of that are but both told me just to move on and live my life like nothing happened! 🤞

@wayners, how did your appointment with the radiologist and your doctor go? What is the next step for you?

@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.