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Undifferentiated Pleomorphic Sarcoma: Anyone else want to share?
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
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Find a sarcoma center. Where do you live. If in Ohio there are many sarcoma center. Also get a second opinion.
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2 ReactionsYes 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?
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!
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1 ReactionRecently 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.
@dbooth, is this a new diagnosis for you? What treatment is being recommended? How are you doing?
That’s good to know. My husband is scheduled to start his radiation on Feb 17, 5 days a week for 5 weeks.
Oh wow! I hope it turns out ok! I'm going for my 1st CT scan next month so I hope to be good to go.
I just had my 6 month CT scan of the chest and MRI of upper right leg where the sarcoma was removed. CT showed a spot on the left lung and a spot on the thyroid. Am scheduled for a a PET scan next week. Am continuing with PT through March because femoral nerve was in sarcoma and have no quads. Get a hinged brace the middle of March and am excited about that!!
Where does he have it. Did he have a treatment plan yet.
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.