Leiomyosarcoma: What can I expect now?

Hello, I was diagnosed in November 2024 of LMS in the peritoneal and had surgery in December. I was told that no chemo or radiation is needed at this time, and will need imaging every 3-months. Can you please share more of your journey?

I was 65 when I had my first surgery. I have stage 4 of vea cava vein Leamyascacoma. I’m now 71. Mad it five years.. you Will too. They treated me like I was an old lady until my daughter gave them a lecture about my work history and strength. They didn’t even want to do surgery. Of coars after surgery even with margins I had met going to my liver and lungs. You will make it for years.

Wondering what you found out? I was just diagnosed and had a 9" mass removed from my abdomen after having a hysterectomy and 3 lbs of fibroids removed 3 years ago. I have scans in a couple days so don't know much yet.

Hi, my cousin was diagnosed with Leiomyosarcoma of the inferior ivc Dec 24.2024. Chemo began on Christmas Day. She rcvd chemotherapy for 1 day and was told she is highly allergic to Heparin. We were then told she now has HIT. They've given her 2 different types of blood thinners that didn't work. As of Sunday she was put on a 3rd type of blood thinner. They've called a meeting with us and said the mass has gotten bigger. It now has reached her liver. She's on continuous dialysis due how the HIT messed with her kidneys. They pretty much told us there nothing else they can do and asked our preference on DNR, etc .
I however believe in miracles. Once this new medication gets into her system and the body gets rid of the clots, she can get a liver transplant while they remove the tumor ( which is located beside the liver). She can remain on dialysis for life if needed. She's to young for ending life. She's an outstanding officer of the law 20+ years service and has a animal rescue with over 50 animals. Jesus fix this💕

I was 65 when I had my first surgery. I have stage 4 of vea cava vein Leamyascacoma. I’m now 71. Mad it five years.. you Will too. They treated me like I was an old lady until my daughter gave them a lecture about my work history and strength. They didn’t even want to do surgery. Of coars after surgery even with margins I had met going to my liver and lungs. You will make it for years.

I also have leiomyosarcoma, one year survivor. I am on two support lists on Facebook. The moderators either have leiomyosarcoma or a loved one does. The lists are extremely helpful to see how others are treated, survival, advice, etc. Most state having direct access to a sarcoma specialist is essential. The center where I am treated, Karmanos in Flint, Mi. Has a social worker who had reached out and spoken to me two or three times. Both about the emotional and psychological effects of having cancer and the burden and fear of/of your spouse and caregivers, your own anxiety, etc. They also have support groups. I see my own private therapist on video weekly as I have for some years. I am a reader and researcher by nature, and I devour every word on the subject. Not everyone wants to do this. As for the inoperable- I had a ovariohystrectomy with appendectomy and removal of most of my momentum last December. They did not get clear margins. I was stage 2b until mets were found in my lungs. That automatically states you at 4. I was terrified and down-hearted until I realized how many have survived and even thrived for years with a stage 4 diagnosis. I was deemed not a candidate for further surgery also. Sometimes the tumors are in places where they can't access, at least while also keeping us alive. I was very sick, sepsis, heart failure, pneumonia, etc after my first chemo and after a lung biopsy. I pulled through and even though I could not move, was hugely bloated with fluid, and had felt I was dying one of the days during this ordeal- when the team came in and one or two suggested hospice. I became very angry and said I want to fight. I will recover and we will try something else. They had given me 2-10 weeks. I had my great pt come out. He got me up, standing, walking, I had to do the stretching and walking homework. Back and forth in this little house. I began losing fluid and weight. My oncologist was amazed and delighted at my follow up. I had genetic testing I had been pushing for. They started me on liposomal doxyrubicin, which I did tolerate. Skipping over some stuff...I ended up with radiation to both lungs, just finished yesterday. Off the chemo, taking an oral med twice a day I just started Saturday. I am of course anxious, but hopeful. At 65, a few more years would be a gift. There are 20 year, 10 year, 5 year survivors in the groups!! Just remember- not knowing if you are religious- statistics are not the word if God; doctors are not God. Use them as a guide; and fight for yourself like hell. I hope this helps. Jill front Michigan

@arcollett, that's fantastic. I'm glad they have cardio-oncology where you receive cancer care. How did the appointment go? What did you learn?

I now have a follow-up appointment with a cardio-oncologist at O’Neal Cancer Center, where I am currently receiving chemotherapy.