Diagnosed with sarcoma? Let's share

Hi Janie....to answer your question, it's one day at a time. Processing your situation is too hard all at once, though that's how it hit you and your husband. Draw strength from loved ones...hopefully close by.. ..and the fact that your husband will receive great care from experienced medical professionals at Mayo. It will be a rollercoaster of emotions and stress. Please get help from your loved ones, rest when you can, and realize you can only take it one step, one day at a time. Wishing you and your husband well in your journey...❤️

I am reading all of your comments and I was diagnosed September 2023 with Angio Sarcoma and secondary liver cancer. At that time I was 78 years old and my world just collapsed. Went through 2 different kinds of chemo, the first one didn't work and the cancer was growing, the second almost killed me because of the side effects and I was ready to die. Now I am on Immunotherapy since late summer of 2024 and it does work. However, I also have Adrenal Glands Insufficiency and need meds to give me energy. As all of you know - Sarcomas can't be cured so we all live with the knowledge that we could die anytime - in September of this year it will be 2 years after the diagnosis and I am hoping I'll live a little longer. Once a month I go for infusion and hope for the best.

@cassielee, I can only begin to imagine the shock. If you would like to inquire about a second opinion with Mayo experts, start here: http://mayocl.in/1mtmR63

What treatment options did her medical oncologist recommend?

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?

@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?

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

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

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. 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.

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.