Leiomyosarcoma: What can I expect now?

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

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.

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💕

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.

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.

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?

Blessed o8: I'll try to answer you ?s in the order you asked:
1. The diagnosis was done on the tumor removed and it took three weeks for the pathology report.
2. No biopsy before hand.
3. On a Monday morning I started vomiting. By Friday I stopped. I attempted that Monday to go to ER after visit to PCP but after vomiting for four and a half hours with no attention except a blood work done twice. I decided to tough it out at home. Went home.
3b. That Friday I said I would try a different ER at a small local hospital. They saw me immediately ( cause they weren't busy) and within Forty minutes I was on my way to have a non contrast CT scan.
3c. I had a bowel obstruction of the small intestine caused by a tumor the size a a youth football. 16x18x12 or so. And I was informed they did not have the equipment or personnel to do the necessary surgery and I would be transferred to either the Cleveland clinic or the university Hospital Seidman cancer center. The pre diagnosis at this point was a GIST, sarcoma or lymphoma. Which hospital would depend on who had a bed open. I selected first available. 3d. I met my surgeon that evening about a half an hour from when I arrived. The surgery would be scheduled for Monday morning. The weekend would be filled with having a CT scan with contrast ( I have to be prepped with steroids since I am allergic to the contrast dye). Meeting the five surgical teams that would assist with the surgery. 3E. The surgery was performed on that Monday using a full abdominal wall incision... A very large tumor as removed 982 grams. Negative margins. It had crushed my small intestine near the entrance to stomach but was free from involvement of the other organs, the bowel was resected. The tumor did fragment but surgeon did a great job cleaning up that mess as best as he was able. Luckily I did not get a stoma. The tumor was sample and sent to pathology.3F. At Seidman you are given an oncology team once the diagnosis is complete. Seidman is a sarcoma center in Cleveland, Ohio. I asked for the genomic and receptor analysis.
4. Post op symptoms; slow post op recovery but fine now; slow recovery from anesthesia but okay now;

Question for you: how did you pick a surgeon? I assume since you are on the watch and wait surveillance.. they got it all and no metastasize has occured.

Since mine was an emergency removal my surgeon was " selected" for me.

Books: ". No cure for being Human" by Katie Bowler. Do you want to communicate directly. My email is jeshaw6801@gmail.com. I live in the Akron area. there is so much to share with you who is on a similar path... How to talk to family; how to grieve;how to not get overwhelmed with all the info and lack of info about LMS. I climb down too many rabbit holes looking for answers.

If I need a second opinion I will either use Mayo or the James ctr at Ohio State....I will get one if there is a reoccurrence or a met.