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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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P.s Dr Swartzs team where amazing with my after care I had to have a wound vac changed Weekly I chose his team the do it at the clinic and not home care that was a great decision I had my three mouth mri last week still cancer free
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2 ReactionsThank you for the reply and the prayers, I will also prayer for you. I have hope in all this and leaning on God and my wife helps so much. Blessing to you, the peace of Christ Jesus upon you.
'Now may the God of hope fill you with all joy and peace in believing, so that you will abound in hope by the power of the Holy Spirit. '
Romans 15:13
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1 ReactionMy sarcoma was first identified as a Myopericytoma, i have them in my right quadrant. some 30yr ago i had a bump on my right ankle that had pain when touched removed and the pathology stated it was a hemangioma, probably wrong as then the 7 tumors showed up in MRIs, all but the one was malignant.
I have been told they were probably there since birth. I never developed a right calf and was told my right led vascular was not fully developed, the three branches were complete. One went malignant and it was tried to save my right leg but it lost the battle. Doing ok 20 months on the prosthetic above the knee.
Recently another showed up at the base of the penis, operation went ok no infection but there were cells in the margin. Next is to have a consult with radiation, which on the right leg just made it worse, as well as cryoablation. I do have pictures of the tumor coming out of my skin. My Oncologist has not recommended any chemo. I am 66 and still working a desk job. I am still living life and hope this new occurrence is the last. the latest pathology describes it is a spindle to round cell neoplasm. When first and only gene study done it was part Brest cancer and part Prostate cancer markers.
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1 ReactionI am now 6 weeks post surgery - I did not have to have a flap - they were able to use muscle within the leg and the funny part was that the tumor was so large it had stretched the skin like a balloon and there was sufficient skin to close the wound.
I only had to stay in hospital for 4 days since no flap - Recovery is going well - I am now in an air cast for walking - the incision is healing well - hard to use the air cast for long because the incision starts right above my ankle and goes up and around behind my knee and the cast irritates it.
I was in a clinical trial for Physical Therapy prior to surgery and it has made a huge difference in my ability to be mobile I use a walker, a wheel chair and the air cast - but I am able to be completely independent for bathing, dressing toileting. I do my usual housework and have been done my grocery shopping once in the chair and once walking - I attribute that to strengthening my upper body and core and knowing how to safely move about.
Care at Mayo during all of this has been superb - if you have to have cancer Mayo is the place to be
Great news even though the tumor was the size of a grapefruit we got clean margins on all sides and I am cancer free.
Still a lot of work to do to walk unassisted again but can see the light at the end of the tunnel
I had 3 nerves that were affected by the surgery and that has been the most painful part - I take Galapentrin but have started to wean off of it - my nerves are waking up and it causes jolts of what feels like electricity as well as a constant burning and tingling on the whole leg - doing to PT required exercises helps with the pain and keeping it wrapped in ace bandage does too to avoid swelling.
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2 ReactionsI am happy for you that you are recovering from the surgery. Thank you for sharing. I am just new to here as my husband was diagnosis with soft tissue sarcoma on his gluteus muscle. I am not sure how to get help from mayo. He already completed his radiotherapy and waiting for the surgery. Since I am worrying about the surgery looking for any type of information.
Hi, my husband was diagnosed with soft tissue sarcoma recently and it was about 6.5cm in MRI. It is in his gluteus Maximus. Completed with the radiation. Worrying about his surgery since it can affect his walking. Any better solution rather than surgery. Please reply if someone has same or similar experiences or any doctors who can suggest better solution.