Diagnosed with sarcoma? Let's share

I met the orthopedic oncologist at Mayo this past Wednesday. She stated she wasn’t sure if it was an endochondroma or a bone infarct but she stated she did not see any malignancy on the image. Everything benign. She stated she was going to run it by a team of radiologists to confirm but stated if she found out differently she would call me. Instead I got a message in the portal that she wanted to see me in 3 months instead of 6. She looked at my labs and stated “I don’t know where City of Hope got multiple myeloma out of that.” I was relieved but the next day I chose to read the oncologist note. In it it said all that I just told you and it stated something like this “discussed red flag symptoms including pain in the distal femur, pain that wakes her from her sleep or weight bearing pain that is persistent “ I have all of that going on and I guess I just didn’t make myself clear. But what does that mean if I do? Now I wonder. I will discuss with her in 3 months. She also wants me to get a steroid injection in my hip as I have been getting those regularly anyway for the past year. I have a little tear in something in my hip and arthritis and the injections help. I’ll have that done on 10/30. I like my Doctor and her team. They were compassionate and caring. I am feeling hopeful. She is also making a referral to the oncologist there at Mayo so I can get a 2nd opinion on my breast cancer treatment. I’ve had radiation but they did not radiate my lymph node where they found the cancer so now I worry everyday. I just pray Mayo breast cancer center will accept me.

Hi Anna (@annalyzethis), Very clever account name. You've been through so much already with your cancer history. We always hope the PET is showing inflammation, and not cancer. It sounds like they are taking the right steps to determine what they are seeing in the lung. I've had a bronchoscopy, when my lung cancer was being diagnosed. It was an easy procedure for me, but they didn't need to get really deep into my lung either. It can be different for different people. Is there a mass in the lung, or are they thinking that it may be a blood clot? Are there plans to try to biopsy the area around the colon?

I was just diagnosed with a myxofibrosarcoma on my left arm. Trying to identify the best surgeon to remove the tumor in the western United States. We live in Boise, Idaho.

Hello @lgshoaf and welcome to the Sarcoma discussion on Mayo Connect. I can understand your concern about getting the best surgeon to remove the tumor. I found some information on this type of cancer on Mayo Clinic's website. Here is the link to that information, https://www.mayoclinic.org/diseases-conditions/myxofibrosarcoma/cdc-20387740.

If you would like to consult with a Mayo doctor who specializes in this type of surgery, here is the link to appointment information, http://mayocl.in/1mtmR63.

I can understand that you would like to find a doctor somewhat close to home, however, when you are dealing with a rare form of cancer, it is usually worth the trip to a cancer center of excellence.

In reading about this type of cancer, I see that it is often painless. Was this your situation as well or did you have discomfort?

I replied on this conversation thread once before I think. I’m Lois V. Married 43 years with 2 grown children. I was dx’d with a soft tissue Sarcoma in 2021 on my left thigh and had it removed by a Surgical Oncologist at Vanderbilt Hsp in Nashville TN. We don’t live nearby to any Mayo hospitals. It seemed to stem from a dog bite I had 10 years prior. Vanderbilts RedCap team approached me about wanting me to be a part of a sarcoma study for 6 years. I agreed. They have sent me questions and they recently drew 5 vials of blood from me. A medical oncologist I saw after this wants me to have a Pet scan. I haven’t had it done yet. Has anyone heard of a mobile unit Pet Scan?

Hi @annalyzethis, I'm wondering if you have learned more about your diagnosis and whether you have lung cancer or if the lung cancer lesion(s) are related to the colon cancer. How are you doing? What did you find out?

Hi Colleen, I have an appointment with my doctor on 11.13.23 in the afternoon to get the
results of the lung biopsy....it could be one or the other or both lung and colon cancer. I'll
also be in touch with my surgeon at UCSF....might like to take a ride and see her in person.
I'm a mental health counselor in private practice and used to helping others; now i find
myself in the position of practicing what I preach like breathing. I tend to drift once in awhile
to myself and my life during a therapy session, but I snap back fairly quickly. Anyway, thanks
for your concern. I'll let you know the results.

Hi Lois, I had my sarcoma also on the posterior side of my left thigh; it was removed in May of '22. It's interesting about your cancer being connected to a dog bite. I was told that science
hasn 't yet figured out the etiology of sarcoma. I had a Pet scan recently and have a meeting
with my doctor scheduled for Monday the 13th of this month to determine if the masses in
my lungs are from the sarcoma which everyone seems to think it is; I'm still hoping for an
inflammation. I also have a mass in my colon where I had colon cancer in 1999. The Pet scan
will determine which I have or both. I've never heard of a mobile Pet scan. I live rural and
the local hospital did have a temporary mobile CT scan set up in a parking area for awhile
but has been replaced by a permanent one. All the Best.

I was diagnosed with stage 4 leiomyosarcoma. I had a PET scan done in a mobile unit that is like a large van that moves from city to city in our rural area. It is a fairly routine test that was used to help locate more of the multiple lesions I have.

Myxoid spindle cell sarcoma removed from my forearm 3/12/23. Radiation for 6 weeks. I go for the review of my 1st 3 month scan next week.
My situation is very lucky compared to others.
And, have my fingers crossed scans will be clear.