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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?
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HugInterested in more discussions like this? Go to the Sarcoma Support Group.
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I was referred to the local (teaching hospital which has the current information and equipment. I got a lot better treatment there. The doctors were specialists that worked as a team. If I had not had the referral, I would have had to make appointments with them each a few months apart, for far more money and better care. Ask your doctor about it.
When I had my 25 sessions of radiation, I would go to the gym and do a workout. It kept me from fatigue and my mind occupied. Just a thought to keep yourself strong for your upcoming surgery
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1 ReactionI am getting daily radiation. I am on Day 3 today. Surgery should be somewhere in December if all goes well. I am meeting with the surgeon tomorrow.
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1 ReactionHi. I have been battling myxoid liposarcoma with round cell for 6+ years. Mine has around cell component. Mayo is the best. Radiation has few side effects. I would get tired more easily. Towards the end of treatment you may have skin breakdown. Myxoid responds well To radiation. You should have good results. Stay positive. It's a marathon not a sprint.
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1 ReactionHi Jeff,
Thanks for checking in and congratulations on your upcoming anniversary and strong recovery! How goes your running? I am doing well. In two weeks I have my first scan since surgery 6 months ago and I'm hopeful that it is clear and all is well. My voice quality is not much changed, so I'm going to see a speech/lang therapist next month for an evaluation and see what options there might be to improve that. Take care and continued good health to you! Deb
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.
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1 ReactionShe 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
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1 Reaction@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
@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?
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?