Diagnosed with sarcoma? Let's share

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?

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 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.

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 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.

I had a large sarcoma mass removed from my left leg a year ago..I then developed blood clots on my lungs
and now, after a PET scan I have a hypermetabolic mass on the right side of my colin..I had colin cancer
in 1999....I am now on Xarelto for my lungs and the doctor told me to stop two days before my procedure
on Friday where a tube will be inserted into my lungs for a biopsy to determine whether I have colin or
lung cancer or if it's an inflammation. I'd appreciate any suggestion, advice, hope, etc. thanks much for
your time. anna

Dream.catchr, how did your appointments go? What did you learn? How are you doing?

I feel the exact same way. It was like life was great and normal and than overnight it changed. I have the same symptoms as you but I have also had back surgery in 2017(fusing L-3, l-4 and l-5) so I’m not sure if it’s from that or this tumor in my femur. Have you ever had another kind of cancer? Like I had breast cancer diagnosed last Nov 22,2022. Rt before I was supposed to open my home for 3 straight days of cooking and feeding and celebrating. The MRI is only if the large tumor in my femor and not in my hip and pelvic area like I had asked so I’m guessing I’ll have to go through a ton more of these imaging tests and scans before they figure out what’s wrong. My recent blood work revealed that I had bone cancer but she wants to run the labs again to make sure. I want to know but I'm afraid to go do the lab work. I keep putting it off. What kind of appts do you have coming up? You mentioned 9 appointments. That’s a lot!! I dread this MRI for this Friday. It’s at 6:45am and it’s a 90 minute scan. I can’t lay there that long with this bad back. Idk what im going to do. Did you ever do a 90 minute scan and how did you get through it? Im keeping you in prayer and praying they find a different less invasive removal and repair. Sleep well! Oh! Do you work full time too with all these pending appointments you have coming? Sweet dreams. I have to get to bed! Good night!

I am happy to hear that you have a MRI coming up on Friday. Finally maybe some answers for you. Which surgeon are you seeing? I have Dr Karim and he is AWESOME!!! Explains things in a way you can actually understand and is very caring. I'm so happy I have him as my orthopedic oncologist. He told me that I most likely have had this cancer growing for a long time. I guess it is a slow growing cancer. Keep me updated on your progress and I will be praying for good news for you.
I do have lots of family and friend support which makes this all a little easier to deal with. I'm very thankful for that. How about you? Do you have support through everything you are going through? I hope so!!! My symptoms started last January when I started having constipation which eventually led to sciatic nerve problems. I was in horrendous pain across my whole right butt cheek. I saw SEVERAL doctors and even went to the chiropractor for weeks but it kept coming back. I could barely sit and it hurt constantly. They kept saying its this or that but I knew inside that something was going on. I finally left work one day and took myself to the ER. Finally found a Dr in the ER that did a MRI on me and found the mass on my sacrum. I was admitted to the hospital so they could do a biopsy. They sent my biopsy results down to Mayo and it even took them a couple months to finally figure out that it was Chondrosarcoma. No chemo or radiation....only surgery can take care of this type of cancer. I'm pretty nervous about my major life changes but I am not ready to die so I will deal with what is coming. I have never had a MAJOR surgery before so not sure what I will be waking up to besides pain. I just always tell myself that I will get through it. They do a major pre op exam down at Mayo so that makes me feel better anyway. Sometimes I just feel like this is all a bad dream!!!

I didn’t answer your question. I have waited 6 weeks for just an MRI of the echondroma/Chondrosarcoma in my rt femur at Mayo. I will finally get it done this Friday and I will see the surgeon next Wednesday Oct 18th. I have to admit I’m scared. My last blood work was indicative of bone cancer. My hips and back have hurt for a few years. I have a bad back so I thought that’s what it was but now I’m thinking it is the Chondrosarcoma that can only be repaired by surgical removal. If they have to amputate my leg and remove part of my hips and pelvis idk what I will do. Please let me know what your symptoms were.