Diagnosed with sarcoma? Let's share
Because sarcomas are rare, I would like to start a conversation to help connect people living with sarcoma or caring for someone with sarcoma.
As you know, sarcoma is the general term for a broad group of cancers that begin in the bones and in the connective or soft tissues (soft tissue sarcoma). There are many different types and sub-types of sarcomas, for example: angiosarcoma, chondrosarcoma, Ewing’s sarcoma, fibrosarcoma, gastrointestinal stromal tumor (GIST), Kaposi's sarcoma, leiomyosarcoma, liposarcoma, malignant peripheral nerve sheath tumor, osteosarcoma, pleomorphic sarcoma, rhabdomyosarcoma, synovial sarcoma and more.
Let's get to know one another. Why not start by introducing yourself? What type of sarcoma have you been diagnosed with?
Interested in more discussions like this? Go to the Sarcoma Support Group.
Thank you for the positive thoughts. Yes, I will do my best to update on treatment and progress.
I'm so sorry your wife has to be in such great pain. I don't understand that with all the advances with controlling pain why anyone should be walking around with severe dehabilating chronic pain. I hope that the pain pump works to take the pain away so she can get through her treatments and get cured. I can only imagine how helpless you feel when she's in such pain. Sending you and her positive vibes and prayers to get through it all successfully.
Hello Deb, I hope this finds you well. I am quickly approaching my 1 year anniversary of the major removal and reconstruction surgery which was performed on October 24th, 2016. I have been blessed in recovery and am doing very well. As this day approaches I thought of your journey and wanted to check in to make sure you are well and walking at pace! Have a great day! Jeff
Hi my name is Chris and I am new to all of this cancer stuff. I was diagnosed with a myxoid liposarcoma in my left thigh last month and am starting my first radiation treatment at Mayo today. I am excited to get on the journey to healing. I am looking forward to hearing from you any tips and tricks to making these next 5 weeks go by quickly and as painlessly as possible. Thanks in advance for any advice.
I just was diagnosed with a myxoid liposarcoma in my left thigh. I am starting radiation today. I am so glad to hear of your 6 year survival anniversary! I look forward to celebrating mine. Did your recurrences happen in the same area?
Hi Chris, I'm glad you found us here on Connect. I hope @udderplace and @kathythornjohnson will return to share the experiences with liposarcoma with you. Chris are you getting daily radiation treatments? Have you had surgery?
@bennyhill38, I wanted to check in and see how your wife is doing. How is chemo going? Has she finally been able to get relief from the pain?
@c945105, how is your husband doing? How are you?
You mentioned that your husband had an ostomy for a time due to rectal cancer. You may be able to provide some insight for a new member who will be getting a colostomy next month. See the post here: https://connect.mayoclinic.org/discussion/ostomy-adapting-to-life-after-colostomy-ileostomy-or-urostomy/?pg=2#comment-76214
She is doing better as far as the pain goes. They have been doing isolated radiation on the mass. However seems to be draining her. I was trying to get her into North Western in Chicago or Mayo don't want to loose her over not getting proper treatment. You really don't know how precious life is until someone you love could be taken away. I have a donation site up not having much luck, Have any ideas?
Robert
From what I understand the first surgery mass was in the femur bone, 15 CM was removed along with the hip Ball. Now there is another mass that is on the same side and on the pelvic bone? The mass has started to grow around the steel replacement previously put in. So I am confused here she was in 10 hours of surgery, it seems like to me the missed a mass it had to be there prior to the first surgery. What I am saying is the mass is already growing around the steel replacement this is in less than 6 months so it had to be missed. Now they don't want to do surgery again to remove it? Makes no sense to me, there reason is to shrink the mass. or get her pain under control. Well the mass is causing the pain so eliminate the mass eliminate the pain. Finally someone is on the same page as me. Shrink or remove the mass then the pain will decrease. So they are doing isolated radiation to shrink the mass. Problem is she is so fatigue from the radiation. I certainly don't want to loose her from treatments either.