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Undifferentiated Pleomorphic Sarcoma
Myrhh
7 Posts
Anyone out there have undifferentiated pleomorphic sarcoma?
7 Replies
JPI
1 Posts
Hi Myrhh,
I am the guilty as charged :)
I’ve been diagnosed with the UPS in 2017, went through radiation for 10 weeks followed by operation on my upper arm. Three years later the sarcoma reappeared on upper lung and was successfully removed together with upper lobe. This summer the UPS was again removed close to the shoulder blade. Even in this crazy time I am lucky to be regularly monitored, every three month, by the wonderful team of great specialist at BCCRA. The life goes on...
Myrhh
7 Posts

@JPI thank you for sharing your story. It sounds like UPS continues to show up. Interestingly when i asked my surgeon whether i could have UPS in another location on my body that i was having pain - she said no - it was not likely. She said it normally comes back in the same spot. In my case they are watching the lungs as i have Grade 3 aggressive UPS. I have only had one appointment since my April 2021 surgery - so i guess i'm in the early part of this journey.

If there's anything i should be asking about, or aware of - i hope that you brave ones that are further along the path will help guide me through this.

Sincerely - m

RareC
5 Posts

I was just diagnosed after having what was thought to be my second basal cell carcinoma only to find out it's PDS and the case is being sent to Mt. Sinai hospital for consultation. I have just been left hanging and doing research is scaring me. Any advice would be appreciated 🙏

Brighty
8455 Posts

Hi @RareC . I would like to give you tbe cancer info line who will be able to answer any questions you have. 1888 938 3333. I hope you find some answers and support.

Whitelilies
2343 Posts

@RareC Hello and welcome to our caring community….I am sorry for your reason to join us here - but glad you did. We are all here to listen and share and support one another.

I checked the site; and found a member with U.P.S. (undifferentiated pleomorphic sarcoma)

please meet @Myrhh (Also from ONT!)

Thank you Myrhh, if you could share your experiences here (UPS), to support our new member (@RareC ) who is also from ONT/similar path as yourself…..much appreciation. Let's Connect in ONT!!

If you wish to reach out/'tag'/any member….type “@”screen name (no space after @) and a few names drop down; select name you wish; turns blue; they receive your message.

Let us support you!

Welcome!

Whitelilies

#rarecancer

Myrhh
7 Posts

@Whitelilies and @RareC Hi there - if i'm not mistaken Whitelilies and RareC you are talking about pleomorphic derma sarcoma (PDS) i have UPS - Undifferentiated pleomorphic sarcoma - mine is soft tissue related. Although i don't know anything about PDS - i'm more than happy to share my experience with Mount Sinai which has been very positive. Princess Margaret has a clinic dedicated to Sarcoma - and some really wonderful doctors. No doubt you will be referred to that clinic if you haven't already been. The doctors and Mt. Sinai work hand in hand with Princess Margaret. Please feel free to reach out anytime you need a listening ear, RareC. You are not alone - we Sarcoma patients will stick together!

Sid0067
1 Posts

Hi everyone,

I was diagnosed with UPS in my upper thigh in earlyMay. Lung X-rays looked clear but going for a CT scan on Sunday and meeting with oncologist on Monday. I saw the surgeon last week and he is recommending 5 weeks of radiation prior to surgery. The slow timeline has me very concerned that the cancer will have metastasized by the time it is removed. Hoping that the oncologist will calm my fears.

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