Diagnosed with sarcoma? Let's share

Run to the closest Sarcoma center to get it evaluated by a sarcoma doctor.
The first step is a good diagnosis
The type and location is critical to finding a plan forward.
The absolute best solution is surgery to remove the cancer but that is complicated by location.

Hello.....it's best to know what type of sarcoma your Sister has
before attempting any informational research. There are a large number of different types of sarcoma and each have different treatment options. Without knowing more details of your Sister's sarcoma it would be a mistake to take a statement like "no treatments are available" as gospel. There are treatments available depending on a number of factors. If possible, find out some more details of your Sister's sarcoma before you dive into researching "soft tissue sarcoma". Because of the amount of information available from a wide variety of sources, it can quickly become overwhelming. Your journey with your Sister, and helping by gathering information and knowledge of her illness, will be an important part of her cancer care. It seems overwhelming, but knowledge is power. Wishing you and your Family well during this challenging, life altering time. ❤️

My sister was just diagnosed with "soft tissue sarcoma" and I would be grateful if I can get any information on how this cancer is treated and benefits from treatment and is this cancer a non curable cancer. Also can you tell me what treatments are provided for this type of cancer since doctors told my sister there isn't any kind of treatments for this cancer. Our family is very concerned for our sister and hope and pray she will be able to get treatment for her her type of cancer. Thank you

Mayo does not require a referral from another Dr. - you just need to call them and request an appointment - My Dr. Was Dr. Goulding - She is one of the top surgeons for sarcoma surgery and see the post below - she saved my leg and also my ability to walk again
I won't sugarcoat the process but will tell you that the whole Cancer Board at Mayo worked to ensure my best outcome. I am walking unassisted at 7 weeks and a huge portion of my calf muscle was removed.
How do I get an appointment at the Mayo Clinic in Phoenix?
o reach the Arizona scheduling office, please call 480-301-8484 between 8 a.m. and 5 p.m. Mountain time, Monday through Friday, or contact us online.

My direct phone is 480-466-6668 is you have any questions I would be happy to help - I know this is a very scary time my name is Julie

I can appreciate his concern for his walking - I had a 12 x 11.5 x 8 The size of a grapefruit)tumor in my calf - It was removed May 5th - along with the greater portion of my Soleus Muscle - Dr. Goulding was my surgeon. She did a phenomenal job I have progressed from a wheelchair to a walker to an Air Cast to walking with a good orthopedic shoe in 7 weeks - I can tell you that the team at Mayo did everything possible to preserve the integrity of my leg - I did 25 pronto radiation treatments and also participated in a clinical study for Physical Therapy for 5 weeks prior to surgery to strengthen my entire body to ready me for the challenges of not having full use of my leg for awhile - I was told it would be up to 4-6 months before I would be walking again and that would be fully assisted with a walker or cane- so I am thrilled at 7 weeks - the radiation killed off 30% of the tumor but the only option was surgery.

Malignant sarcoma in my left hand between my 4th and 5th fingers grade 2

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.

I 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.

I 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.

My 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.