Diagnosed with sarcoma? Let's share

Welcome @spadafarm. I can only imagine that the new diagnosis of Chondrosarcoma is frightening for both you and your husband. Luckily, there are several members who can share their journeys with you, like @deborahe @jeffk @julie010 and others.

You can read more about their journeys and connect with them in this discussion:
- Cricoid Chondrosarcoma https://connect.mayoclinic.org/discussion/cricoid-chondrosarcoma/

Have you already requested a second opinion at Mayo Clinic?

I was diagnosed in 2018 in Michigan with a mass on my back near my right shoulder blade. My GP expected it to be a lipoma so I went to a general surgeon. Whoops. When the biopsy was positive for cancer, I went to University of Michigan Rogel Cancer Center for two additional surgeries-- radical removal to get clean margins and flap reconstruction. The biopsy and research found small blue cell sarcoma, most like Ewings. I also had tiny nodules in my lungs, so I had 7 rounds of chemo: doxorubicin, cyclophosphamide, and vincristine. Then we moved to Phoenix, and I came to Mayo Clinic Phoenix to continue my care 2019-current. I've had four rounds of radiation to nodules as they appear, and most recently just finished 7 rounds of chemo: topotecan and cyclophosphamide. Then my CT last week shows I may have Valley Fever, awaiting blood test results, or more masses in my lungs I've been very positive throughout and during Covid isolation. But this new challenge is a shock. I rarely go out, always wear a mask, and take care of myself. Cancer sucks!

Oh gosh, @vivianfromaz, I sincerely hope you don't have Valley Fever or that it is easily manageable.

@damlady2, amputation would be life-altering. I can understand your hesitancy. Are you having to make a decision about surgery or not at this point or not yet?

@spadafarm, as you can see there are several sarcoma survivors here who are Mayo Clinic patients. If you have questions about Mayo or as you prepare, please ask.

From the National Cancer Institute:
sarcomatoid carcinoma https://www.cancer.gov/publications/dictionaries/cancer-terms/def/sarcomatoid-carcinoma
"is a type of cancer that looks like a mixture of carcinoma (cancer that begins in the skin or in tissues that line or cover internal organs in the body) and sarcoma (cancer of the bone, cartilage, fat, muscle, blood vessels, or other connective or supportive tissue). The sarcoma-like cells are often spindle cells. Under a microscope, spindle cells look long and slender."

Biceto, sarcomatoid carcinoma may appear in different parts of the body. Do you know what type of sarcomatoid carcinoma your friend has? Lung, larynx?

Husband has just been diagnosed with soft tissue sarcoma

Hi Mary, oh, I’m sorry to hear about this new diagnosis. How was your husband’s cancer discovered? What treatment plan has been suggested?

I have Lipo sarcomas in chest/ shoulder area. I have had 8 surgeries, 3 cryoblations and radiation. The first surgery was in 1988. Since the mid 1990’s I have been a Mayo Rochester patient. Presently I have a large mass on my brachial plexus. My oncology surgeon says the only way to stop this slow growing tumor is a quarter amputation of my arm/ shoulder. This would drastically change my life style. I am 77 years of age very independent and an active bike rider. My prayer is for continued slow growth. I am currently on a trial with Ibrance and have been taking it for 2 years. The masses have not shrunk and recently showed some growth. Positive attitude and trust in my team at Mayo has allowed me to remain positive and live life to the fullest.

Update. I will be scheduled soon for a Four Quarter amputation of my right shoulder/arm. This will be at Mayo Rochester. I am most concerned about after surgery adapting to my new reality. Rehab Dr said I can do everything I did before. I do not understand this as I assume I will be on pain killers and not be able to drive, walk up stairs without assistance or many other tasks. I live alone in a remote area am not near a PT climic or hospital. Are my worries not founded? I am will to go into a transitional rehab facility.