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Endometrial sarcoma, stage IV: Why no surgery?
Hello! Anyone here diagnosed with endometrial sarcoma that has spread? I was diagnosed back in July when I couldn't get rid of a cough. Come to find out I had a huge sarcoma in my uterus and it had spread to my spleen, liver and lungs. They labeled me as stage IV because the cancer had crossed over the diaphram. First thing I asked my oncologist was when could I have a hysterectomy and my spleen out. He flat out said no. Seeing as it was in my liver and lungs, he was more interested in getting those to shrink than dealing with the uterine tumor. The lungs and liver are what will kill you he said. 5 courses of the Red Devil chemo paired with another chemo drug with sizable shrinkage/stabilization in everything except the spleen tumor. Again i broached the surgery subject. If the spleen is not responding and my liver/lung tumors have shrunk, why can't I have surgery. Again he says no and says he's switching to docetaxel/gemcitabine combo for chemo. Should I get a second opinion or is this normal course of action? It seems so illogical to me to not remove all that you can.
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Hello @dinkalina and welcome to Mayo Connect, I can understand your concerns about having surgery. You asked about getting a second opinion. If you have any concerns or questions that are not getting addressed, it is always your right to get a second opinion.
If you would like to have a consult with Mayo Clinic, here is a link to information about obtaining an appointment, http://mayocl.in/1mtmR63. Here is some information from Mayo Clinic's website about Sarcoma Care and Treatment at Mayo Clinic,
https://www.mayoclinic.org/diseases-conditions/sarcoma/care-at-mayo-clinic/mac-20351051
If you cannot be seen at Mayo Clinic for any reason, then a university medical center would be a good choice as well.
Have you looked into getting a second opinion, yet?
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1 Reaction@dinkalina, I add my welcome. I expanded the title of your discussion to reflect your question and also made it appear in the Gynecologic Cancers support group as well as the Sarcoma support group.
You might also be interested in reading the stories shared by @darren12 @pn1998 @gidget6 @swagner2024 @leahinaustin in this related discussion:
- Endometrial stromal sarcoma (ESS): What treatment did you get?
https://connect.mayoclinic.org/discussion/ess-cancer/
I think it is a natural reaction when one hears they have cancer to just "take it out!" In some tumor types chemo is given prior to surgery and sometimes no surgery is necessary. It sounds like your oncologist has not explained why not in a way that gives you confidence in the treatment plan. That is both frustrating and scary. Do you have an upcoming appointment where you can ask more questions for clarification?
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Hello. I would definitely get a 2nd or even 3rd opinion. I work with a man whose wife had Endometrial Sarcoma and they didn't do a hysterectomy right away. For 2 years she went through radiation. They finally went up to Mayo Clinic and get the hysterectomy but her oncologist here didn't want to do one. I don't understand it. Anyway, you have to be your own advocate, unfortunately. Seems like surgery would make the most sense but I am not a doctor. Best wishes in finding the best path forward for your health!
Sandy
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