1. < Sarcoma

Undifferentiated Pleomorphic Sarcoma: Anyone else want to share?

Posted by me67 @me67, Mar 3, 2017

I have been diagnosed with pleomorphic sarcoma. Is there anyone on this site that has had this cancer or has it now? I would like to talk to you. Thank you

Interested in more discussions like this? Go to the Sarcoma Support Group.

wayners | @wayners | Feb 6 8:34am
In reply to @dbooth "Undifferentiated Pleomorphic Sarcoma Anyone else dealing with this." + (show)
@dbooth

Undifferentiated Pleomorphic Sarcoma
Anyone else dealing with this.

Jump to this post

Where does he have it. Did he have a treatment plan yet.

REPLY
wayners | @wayners | Feb 6 8:33am
In reply to @dbooth "Undifferentiated Pleomorphic Sarcoma Anyone else dealing with this." + (show)
@dbooth

Undifferentiated Pleomorphic Sarcoma
Anyone else dealing with this.

Jump to this post

I feel fine. I have been done for 2 weeks now. During the treatments I was fine and a few days of burning since but very tolerable. I feel my skin healing everyday. I use Cerave everynight and all good. A little fatigued but I have remained active throughout.

REPLY
1 reply
janiemae | @janiemae | Feb 4 10:01am
In reply to @wayners "Yes, I had surgery and just went thru 35 radiation treatments! Hope to be all good!..." + (show)
@wayners

Yes, I had surgery and just went thru 35 radiation treatments! Hope to be all good! 3 month checkup in March. What is going with you?

Jump to this post

Wow 35 radiation treatments. How did you feel when you first started treatments? If you don’t mind me asking

REPLY
janiemae | @janiemae | Feb 4 9:59am
In reply to @dbooth "Undifferentiated Pleomorphic Sarcoma Anyone else dealing with this." + (show)
@dbooth

Undifferentiated Pleomorphic Sarcoma
Anyone else dealing with this.

Jump to this post

My husband was diagnosed with UPS on Thursday. I just joined this group a few minutes ago.

REPLY
wayners | @wayners | Feb 1 12:29pm
In reply to @dbooth "Undifferentiated Pleomorphic Sarcoma Anyone else dealing with this." + (show)
@dbooth

Undifferentiated Pleomorphic Sarcoma
Anyone else dealing with this.

Jump to this post

Yes, I had surgery and just went thru 35 radiation treatments! Hope to be all good! 3 month checkup in March. What is going with you?

REPLY
2 replies
dbooth | @dbooth | Jan 31 3:09pm

Undifferentiated Pleomorphic Sarcoma
Anyone else dealing with this.

REPLY
6 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 13 7:51pm
In reply to @lydiafransk "I was diagnosed with pleomorphic sarcoma in my right upper leg last May30,2024 and was operated..." + (show)
@lydiafransk

I was diagnosed with pleomorphic sarcoma in my right upper leg last May30,2024 and was operated on July 26. The oncologist surgeon thought the sarcoma was freestanding until he opened me up. The femoral nerve was also part of the mass and had to come out. I have had 30 days of radiation and get checked in Feb. 2025 to see if it has metastasized to my chest. Since the nerve was removed, I need to use a brace and walker. I also found out after surgery that I had this sarcoma for 3 years and I think it was Stage 2 (maybe 3). I never felt it or I’ll in any way; not even when ai was diagnosed.
Do you have pleomorphic sarcoma? Have you had surgery? It is so good for me to be able to communicate with others who may have this sarcoma. Please continue to share your story. It’s frustrating for me not to have anyone else to talk with about this.

Jump to this post

@lydiafransk, you're right that it can be helpful to connect with others who have been there. I wanted to check in and make sure you saw the helpful posts and connections from @wayners and @bobbydoshier.

Lydia, how are you doing?

REPLY
bobbydoshier | @bobbydoshier | Jan 6 8:53am
In reply to @wayners "I had a 1.9 cm ups removed in October and going thru 35 radiation treatments now...." + (show)
@wayners

I had a 1.9 cm ups removed in October and going thru 35 radiation treatments now. I think we caught mine early and I was told it was superficial. It was on my left shoulder and the 1st CT scan said no other problems. Mid March is my next check up and I am doing well. I have continued everything I was doing other than being able to head to a warmer climate. Seems no one knows much about ups. Good luck 🤞

Jump to this post

UPS is rather rare, aggressive, and high probability for Mets to other locations. It is extremely important to follow the test regimen on schedule. Stay vigilant in checking your whole body. UPS usually occurs in arms and legs, but can be anywhere. Best wishes to you.

REPLY
bobbydoshier | @bobbydoshier | Jan 6 8:42am
In reply to @lydiafransk "I was diagnosed with pleomorphic sarcoma in my right upper leg last May30,2024 and was operated..." + (show)
@lydiafransk

I was diagnosed with pleomorphic sarcoma in my right upper leg last May30,2024 and was operated on July 26. The oncologist surgeon thought the sarcoma was freestanding until he opened me up. The femoral nerve was also part of the mass and had to come out. I have had 30 days of radiation and get checked in Feb. 2025 to see if it has metastasized to my chest. Since the nerve was removed, I need to use a brace and walker. I also found out after surgery that I had this sarcoma for 3 years and I think it was Stage 2 (maybe 3). I never felt it or I’ll in any way; not even when ai was diagnosed.
Do you have pleomorphic sarcoma? Have you had surgery? It is so good for me to be able to communicate with others who may have this sarcoma. Please continue to share your story. It’s frustrating for me not to have anyone else to talk with about this.

Jump to this post

Hello Lydia. I have been exactly where you are. I had same sarcoma in same place. 25 radiation treatments in 02/2020, surgery 04/2020, 3 years of mri & chest ct's evrry 3 months, and 2 yrs of same tests every 6 months. In 05/2025 I start a once a year regimen for the rest of my life. The regimen is required to look for Mets. So far so good. At 76 years old, this is the 3rd bad cancer I've had, all totally different. I've learned that the best thing a patient can do is to maintain a great attitude and do the test regimen on time. Mayo's Orthopedic Oncology is the best. Trust what they do and say. You can get through this. Best wishes to you.

REPLY
wayners | @wayners | Jan 6 8:30am
In reply to @lydiafransk "I was diagnosed with pleomorphic sarcoma in my right upper leg last May30,2024 and was operated..." + (show)
@lydiafransk

I was diagnosed with pleomorphic sarcoma in my right upper leg last May30,2024 and was operated on July 26. The oncologist surgeon thought the sarcoma was freestanding until he opened me up. The femoral nerve was also part of the mass and had to come out. I have had 30 days of radiation and get checked in Feb. 2025 to see if it has metastasized to my chest. Since the nerve was removed, I need to use a brace and walker. I also found out after surgery that I had this sarcoma for 3 years and I think it was Stage 2 (maybe 3). I never felt it or I’ll in any way; not even when ai was diagnosed.
Do you have pleomorphic sarcoma? Have you had surgery? It is so good for me to be able to communicate with others who may have this sarcoma. Please continue to share your story. It’s frustrating for me not to have anyone else to talk with about this.

Jump to this post

I had a 1.9 cm ups removed in October and going thru 35 radiation treatments now. I think we caught mine early and I was told it was superficial. It was on my left shoulder and the 1st CT scan said no other problems. Mid March is my next check up and I am doing well. I have continued everything I was doing other than being able to head to a warmer climate. Seems no one knows much about ups. Good luck 🤞

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.