Leiomyosarcoma: What can I expect now?

Hi this is Joanne. My primary was on the mysentry and was large and was crushing my small intestine near the connection to the stomach. I was experiencing a bowel obstruction at time of admission. It was an emergency surgery. It was taken out with negative margins but unfortunately it fractured on removal so they had to do a clean out of the debris. I was clear for my post-op scan (60 days after) but my second scan was vague about my liver. I had to have a liver biopsy and am awaiting results. If the LMS is confirmed I will probably start chemotherapy.

Curious about how they removed those nodules from your lungs, like surgery or chemo? And did you have a primary source of LMS somewhere else? I'm halfway through radiation treatments in order to shrink the mass before surgery (3"X3"X2.5") in my pelvis. Pain radiates down my left leg to below my calf muscle.

Hi Joanne...it was outside her uterus and hadn't impacted any other organs. Originally her surgeon suspected it was uterine cancer. My wife discovered it herself and had a ct scan, followed by surgery. Nothing about the tumor was known until the pathology was confirmed. Recent testing showed lung mets after 2 years of ned following her initial surgery. We're hopeful the Votrient will be effective. She has her quarterly visit to Mayo in a few weeks.
Best Regards
Chris

Hi, this is Joanne,
My doctor didn't recommend them. I was familiar with GIST type of sarcoma and they always ask for genomic sequencing so I asked to have it as well And then because their is speculation that my r-LMS could have been from a parasitic fibroid (myeloma) I also asked for receptors identification.
Where was your wife's tumor? Mine generated from the mesentery
https://images.app.goo.gl/AcpjJBCAZFffC63s6
I had one clean scan post surgery and tomorrow I have a liver biopsy to rule out potential liver met.

Hello....
My wife has rLMS and was diagnosed 2 years ago. Had been "ned" until late last year. Now has lung mets. Being treated with Votrient and will rescan early April. Please let me know about genomic and receptor testing. That wasn't mentioned by her Dr.

Stage 4 leiomyosarcoma of the IVC, spread to liver. Diagnosed late June 2024. Had surgery in Sept. So far all scans look good. Feeling great. I’m actually relieved to have scans every 3 months just for my peace of mind. I’ve reached out for some counselling as I feel numb. I don’t cry over things that would normally move me to tears. It’s as if I’ve built a wall to protect myself and it hasn’t come down. Anyone feeling the same?

Blessed o8. :I'm glad we are connecting..
To others with rLMS or uLMS please reach out to us...we are interested to hear your journey. Also interested in your genomic and receptor analysis.

Hello jeshaw6801, I appreciate you sharing your journey and thanks for providing your e-mail. I'm going to e-mail you tomorrow.

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.

Hekki jeshaw6801: Yes, it was the retroperitoneal LMS. I'm so glad to connect with someone who truly understands this experience. Congratulations on your first CT scan! That first "all clear" is such a relief, right? I had my first post-op scan in January—also "NED," ha!—and my next one is scheduled for April.

I’m not currently working with a sarcoma center, but I’ve made an appointment with MD Anderson for a second opinion and more detailed guidance. I haven’t had genomic testing or receptor site analysis yet, but I plan to ask about it during my consultation. This entire journey has been overwhelming, and I constantly find myself searching for new information—or rereading things I already know, just to process it all.

I've drastically changed my eating habits and now follow an anti-inflammatory diet. I’ve also become much more mindful about the personal hygiene products, cleaning supplies, and food I purchase.

So, how were you diagnosed three weeks after your tumor was removed? Did you not have a biopsy before surgery? And if you didn’t have symptoms, how did you discover the tumor in the first place? I started experiencing symptoms in the fall of 2023 but was initially misdiagnosed with IBS. At first, the pain was mild, so I learned to live with it. But as it worsened significantly, I pushed for a CT scan, which ultimately revealed the tumor.

Are you experiencing any post-op symptoms? I haven’t read any books about "living life 90 days at a time", do you have any recommendations? I do try my best to be grateful for every day. Also, I've watched various YouTube videos, especially those focused on food, self care and metabolic therapy, especially interviews with Dr. Seyfried.