Diagnosed with sarcoma? Let's share

Hello my name is Caroline and I am a childhood cancer survivor and now adult survivor of Sarcoma. I had Ewings Sarcoma in my right arm at age 13 yrs old. Then I had Osteosarcoma in 2005 in my right shoulder - removed shoulder- limb sparring surgery which did not spar the limb. which was caused by too much radiation. Then in 2020 I was diagnosed with UPS- Undifferentiated Pleomorphic Sarcoma. Very aggressive fast growing tumor. I maxed out the amount of chemo I could have in a lifetime and had to do immunotherapy. Then a few months later another tumor was found in the surgical margins and that had to be removed. Because of that they want me to do the immunotherapy Keytruda treatment. I had my right arm and shoulder amputated with the first surgery- fourth quarter amputation. Then a few months later the 2nd tumor was in the side of my chest wall. I started Keytruda and had some side effects. My thyroid got wiped out which we knew would happen. Then I got a rash that was all over both of my calves and would not go away for 2 years. But then it comes back and goes away and is back again. Also my eye sight got really bad. Never wore glasses now wear bifocals. I was in a car accident in March 2024 which I fractured my sternum and had a partially collapsed lung. I did not know I had a fractured because the ER said I was fine. But I was in so much pain and could not breath the doctors put me on steroids. If helped for a little while then I would run out. This went onfor months until zi made them send me a cardiothoracic surgeon and she said it was fractured. She thought I had a tumor pushing on the chest wall and that’s why it won’t heal. She wanted to do a biopsy. I said let’s wait because I am getting scanned. Anyway- no tumors. But fracture is starting to heal now. So mo metal plate with screws needed. But after the scans was Christmas and I started having more lung issues and a bad reaction to the steroids they put me on. My legs blew up and got beat red with a rash. After being down in NY we went home and they had me see a different pulmonologist and he said I have bronchiolitis and put me me on 2 antibiotics and steroids. Also diuretics. Finished medication and cough seems to get. Little better but then when off medication I get sicker. Now I went from doing martial arts to not being able to walk my dog because of falling. Then could not go up stairs with oxygen dropping into 70’s. Then they thought I caught another virus, I could not walk across the hall to the bathroom because my oxygen would drop. I finally went to the ER. I told all my doctors but they did nothing. At the ER they said I have pneumonia, a blood clot in my right leg and UTI which the UTI is healed but I have blood in my urine. They hospital doctors said I never had a virus that I inhaled something. I think it is from the air bag that broke when the old man T- Boned my car. I fractured my sternum but the hospital told me I was fine so it took me months for them to check out why my chest hurt so much. I started coughing in October 2024 my daughter had Covid and my husband and I had a virus. They got better but I got worse like I listed above. I was in the hospital from 2/4 to 2/10 and now I am on oxygen 24 hours a day.My pulmonologist thinks maybe the Keytrudia is the cause but my oncologist says no it would happen a year later not this far out, I have all the side Effects except the autoimmune diseases. My doctor is checking for the autoimmune diseases incase they missed the market. But I definitely have inflammation. How do I get rid of inflammation!!!!!! I also want this cough to stop. But my esophagus. Is 5 mm thick inflamed and my vocal cords are damaged. Did the powder from the broken air bag get in my throat and lungs and cause the damage or could it be the Keytruda that caused the damage. I don’t know. They are checking for autoimmune diseases to see if I could have that because they are not sure. I do have scarring from chemo I had as a child but the scarring has stayed almost the same. My body had adapted to getting 50% of air into my lungs my whole life. Now something had changed. Anyone else having problems with lungs and Ocygem dropping?? Hope this helps.

Yes - chemo has been fairly effective. Currently on treatment break - next appt. scheduled for March 17th. Have not noticed any new lesions. Have a dermatologist appt. also scheduled this month. Thanks for the shout out and glad to be here. Am checking out the discussion you suggested.

Welcome, @gayglenn. You might be interested in this related discussion:
- Kaposi’s Sarcoma: Just want to talk https://connect.mayoclinic.org/discussion/kaposis-sarcoma/

I'm glad to hear that chemo has worked. Did your oncologist say that it is in remission? Do you continue with doxorubicin liposomal (Doxil) or are you on a treatment break right now?

Hello - I have been HIV+ for close to 34 years and am undetectable. I was diagnosed with Kaposi Sarcoma in October 2021. Have been treated with Doxil intravenous and KS is currently dormant. Are there other treatments for this disease and if so are they well tolerated and effective. What is the prognosis for someone in this situation. I am currently 76 and long term survivor of HIV. Also how rare is it that someone undetectable can suddenly develop KS. I remember all my friends who died from this and pneumocystis back in late 80's and early 90's.

Hugs to you. My R-LMS was diagnosed in Oct 24 when I had a bowel obstruction.

It sounds like you are in good hands currently. Has your surgeon handled LMS patients before?

Ask for a genomic sequence and a receptor analysis too. These could be helpful in determining next steps after your surgery including drug studies.

Thanks for the opportunity to tell my story as early as it is.... I was diagnosed with Leiomyosarcoma last month after a detailed biopsy came in from the Mayo clinic. My provider in Denver requested further analysis from Mayo. The result was LMS that is 7.5cm X 5cm X 7.2 cm in the pelvis area. The iliopsoas muscles are involved. My suggested treatment (from a radiation oncologist and confirmed with my surgeon) includes 25 sessions over 5 weeks of radiation first, followed by surgery, and potentially more radiation. The hope is to shrink the mass enough to get a margin that the surgeon wants. I'm hoping the mass reduction will relieve my little pain and larger numbness in my left leg. I've fallen several times since Jan. 1, resulting in a cane use followed by a 4-wheel walker. My weakness in my left leg continues and may require me to be wheelchair bound until I get some relief. I've been examined by these docs along the way the past 6 weeks: PCP, oncologist, radiation oncologist, neurosurgeon, and finally a surgeon (had a hernia repair by him a year ago and I was happy with him). My first treatment is Mar. 6. I'll try to update my progress here.

Hugs to you.

Please work with a sarcoma center as they are shown to have higher survival rates. I have R-LMS which is also rare . The best center is md Anderson in Texas but each state could lay claim to their centers ( including Mayo. If going to a sarcoma center and offered only palliative care...I would hitail it to the best center .... Md Anderson. I think they do video appts too.

If all they offer is pallitive

Hi
Stewart here, 40 yo
Been diagnosed with Synovial Sarcoma of the prostate, which is apparently very rare.
14cm mass in my pelvis and mets to the lungs.
Felt no symptoms until i started having urinary symptoms and then retention. Thats when the mass was found. All up 3 weeks from symptoms to diagnosis.
Best they can offer is palliative radiation and chemo

@janiemae, such a good question "How do you convert from wife to 24/7 caregiver to someone with cancer?"

You might wish to repeat that question as a new topic in the Caregivers group here: https://connect.mayoclinic.org/group/caregivers/

While not the same cancer type, this older discussion gives some helpful tips:
- How can I be a supportive caregiver? HPV Squamous Cell Carcinoma https://connect.mayoclinic.org/discussion/diagnosis-and-discussions/

How are the appointments going? How are you holding up?

Hey @kevo02, welcome. You might also wish to join this discussion:
- Kaposi’s Sarcoma: Just want to talk https://connect.mayoclinic.org/discussion/kaposis-sarcoma/

It's great that you are getting care with the very special specialists at Mayo Clinic, especially for a rare cancer. Do you have to travel far for your 3 month follow-up appointments? How did you do with radiation? Any lingering side effects?