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 Cancer Support Group.
Welcome to Connect, @me67.
Thank you for starting this conversation about undifferentiated pleomorphic sarcoma. Hopefully by starting this discussion, we will attract other people to join in and share with. While we wait for that to happen, I would like to connect you with other members who have rare sarcomas, albeit of different types. Please meet @udderplace who has liposarcoma, @brinys who has angiosarcoma and @deborahe who has cricoid chondrosarcoma.
Me67, can you tell us a bit more about yourself. When were you diagnosed and what treatment(s) have you had?
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On Oct. 11, 2016 we came back from a 3 week vacation that consisted of a lot of hiking in the National parks. I noticed my right leg swollen, red and with a rash. I went to all sorts of doctors and tests to find out why. (vein mapping, blood clot, ecocardiogram, blood work, pap smear, stool testing, CT scan (this is when a mass was discovered in the deep part of my pelvic). this caused more testing to the abdomen, pelvic, legs, etc. I even had an incision by a surgeon to look at the mass. This was a waste of time since he did not see the mass from the incision he had made. He did take a biopsy of my lymph node in the right leg area and came back benign. All results were negative, benign, etc. Blood work perfect, Ovarian cancer and hep negative. Finally, I went to an oncologist suggested by my primary doctor. He did a NEEDLE biopsy and that is when we found out that I had pleomorphic sarcoma. I was signed up for radiation treatments until I saw a special surgeon (only 3 like them in the valley). He stopped the radiation and is facilitating getting me to Mayo Clinic. I am anxious to go to get this tumor out before it grows in size. It is 3.7 at the largest place. I have not had any treatments as of this date. I am anxious to get started, though. Does it take Mayo Clinic a long time to set up the doctors that will be assigned to you? Does anyone know about this?
@me67 I’m so sorry to hear of your diagnosis, but it appears that your primary care doctor as well as your oncologist are great people who are really working on your behalf! How fortunate. Keep us posted on your appointment at Mayo and let us know when it will be and how it goes for you. We are all rooting for you and wishing you a good appointment with a helpful treatment plan. Keep in touch. Teresa
I encourage you to start a new topic in the Cancer group about getting your first appointment in oncology at Mayo Clinic. I’ll introduce you to members who can share their experience with you. In the meantime, you may also be interested in reading this discussion.
– Getting your first appointment http://mayocl.in/2iNdgpc
Hello, I know its been a while since you posted on here. I have the same diagnosis..had surgery and now in a puzzle what to do next and where to go
Hi @carol71050, welcome to Connect.
There is also an active discussion about sarcoma happening here.
– Diagnosed with sarcoma? Let’s share https://connect.mayoclinic.org/discussion/diagnosed-with-sarcoma-lets-share/
You can read more about @me67 here: https://connect.mayoclinic.org/discussion/diagnosed-with-sarcoma-lets-share/?pg=5#comment-64327
Carol, when were you diagnosed? What treatments options are you considering?
Do I need to weigh in on the discussions?
Hello, I had a tumor on my right calf and it was diagnosed as undifferentiated pleomorphic sarcoma last November.. I did 5 weeks of radiation to knock it down in size so they would not take my calf muscle. The tumor was removed on 2/15. The surgical wound was 5.5 inches across and exposed the calf muscle. It took me 6 months to get the wound healed and closed. I did high protein diet, Vitamin C IV treatments to granulate tissue , Hyperbaric Oxygen treatments and a skin graft. The surgery biopsy said over 70 percent kill rate of tumor cells and clear margins. Follow up MRI of surgical wound and CT scan of chest. As I approached my 6 month scan, I found 2 lumps in my groin. The results of the second biopsy show three lumps. There is a third lump deep in the pelvic cage. The Tumor Board is meeting to discuss treatment. I am guessing chemo. Once I get a treatment recommendation I wanted to hear how chemo has worked for other undifferentiated pleomorphic sarcoma patients. Thank you. speedreader
My dad has undifferentiated pleomorphic sarcoma of unknown primary – they found lung metastases and he is having 3-weekly Trabectadin which is doing the job so far so good 🤞
Hello Genmalt, Thank you for sharing. Prayers for your Dad. Is he experiencing any negative side effects from the Trabectadin?
I am waiting for my tumor board to recommend a treatment plan for me.
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