What’s New in Leiomyosarcoma?

This is an excellent overview from a renowned specialist. But I'm curious about the inclusion of carcinosarcoma. I thought that was no longer considered a "true" sarcoma.

As a daughter, of a mother who had leiomyosarcoma, I am interested to know if any link has been found to leiomyosarcoma and heredity. I know it worried my mom that she might pass this down to her daughters/granddaughters. Thank you

What treatments do you recommend for leiomyosarcoma in the liver. Treatments so far, each for at least 3 cycles: Gemcitabine, Gemcitabine + Gemcitabine, DOXOrubicin, Trabectdin, Votrient. Tumors have increased in size and number.
Thank you.

So little time so much to do. How does one get accepted into a clinical trial? Because time is of the essence and it is flying...I am curious what criteria is needed for acceptance. Will the first consultation with the physician and all clinical reports available provide an answer? Thank you for all you do.

I HAVE leoiomyosarcoma tumor in my stomach that metastise to my liver and maybe in bones of the pelvis I am looking for treatment .There is a checkpoint study in Seattle opens two weeks .Or should I come to your MSK

Should all uterine sarcoma patients request estrogen and progesterone receptor testing on their tumors? And if positive, which aromatase inhibitors should be tried?

My sister in law was diagnosed in January 2016 with LMS, she is also an insulin dependent diabetic. She underwent Chemotherapy and went into remission. She was clear in PET scan in September and CT scan in December revealed a tumor again and small tumors on the fatty tissue around her intestines and her belly filling with fluid. They have basically told her to look at her quality of life rather than quantity. It is sad to think that this is it. Basically go home and die. I just wish we had found Memorial Sloan sooner, maybe we could have consulted before now, when we feel helpless and with no hope.

Hi i am preeti from India. I am fighting with metastatic leiomyosarcoma. I have taken chemo MIA, halaven with DTIC,Votrient and now on Yondelis.
Each treatment showed good response for 3 to 4 cycles but after that disease progressed. I am tensed now what next after Yondelis.
Please reply.

Hello,
To clarify: if one has had abdominal and transvaginal ultrasounds that show multiple leiomyomas (intramural, submucosal, and subserosal) and thus the endometrium could not be reliably measured, then there is no way to tell if there is some kind of cancer present? Should I see a general gyn next, or go directly to gyn oncology? Not sure it matters, but I am a former patient at MSK and had a total thyroidectomy for papillary thyca, tall cell variant, in 2010. I've been doing well until just recently when I noticed very slight spotting 10 yrs post menopause. I just don't want to waste an oncologist's time if I should have a gyn do initial tests. Thank you!

Thank you for taking the time to forward my question to a MSKCC surgeon. It is so helpful to get an expert's opinion on who to see next! I will call the general gynecologist first thing in the morning. Many thanks!
~Laura

I am now cancer free fpr almost 8 years. I was diagnoside with LMS in 11/2010. I had surgery to remove my uterus cervix and ovaries. I had a lesion in my Gluteal Meduis muslce which was removed after chemo- Gmzar/Taxiter and Doxy. I have nodules in my lungs stable for all ths time. I had a low grade that they even had a hard time verifying was LMS. I still have yearly cat scans I have mine tomorrow. I always get nervous But I feel so lucky. Is this normal? Thanks and GOD BLESS all the cancer patients and wonderful doctors, scientist etc... for all you do!!!

My mom was diagnose with leiomyosarcoma stage IIB in the pelvis. It was actually a tumor that developed on a residual ovary - she had a hysterectomy and removal of tumor along with some of the abdominal tissue. How long should she wait before treatment? She is also still having a lot of nausea, stomach pain and pain in her abdomen and back at 4 1/2 weeks post surgery - is this normal?

hello - My mother has LMS and I'm curious to know if anything new has come up recently that we should be exploring.

Thanks

I was diagnosed with uterine leiomyosarcoma at age 39. I underwent surgery and chemotherapy at the time. Today I am 67 years old with no recurrences since then. Is there a research study that could use my background and treatment regimens to help discover more about this disease? I would like to add something to the medical data and research as a result of my experience if it would be helpful. Thank you.

In 2005 my mother received doxorrubicin plus ifosfamide. I would like to know if it's possible to her receive again doxorrubicin plus OLORATUMAB? Is there any clinical trial for LMS?

3 weeks ago yesterday I had an LAVH related to years of dealing with heavy periods, severe cramping and a development of a fibroid. My biopsy results revealed I have Uterine Leiomyosarcoma- stage 1B.
The pathology shows it was positive for estrogen and progesterone receptors. My CT scan shows no metastatic disease at this time. I was wondering if its possible to have a phone consultation with a specialist. My oncologist has given me a few options at this point and I am confused about what is best practice. I am 39 y.o. and still have my ovaries. My options range from simple observation (scan every 3 months) to oophorectomy and/or chemo. My oncologist says it really is up to what I want to do and if the benefits out weigh the risk?
How do you recommend your patients make such decisions?

When a uterine mass is detected in an imaging study, many ordinary gynecologists commonly presume that the suspect mass is a benign growth such as a "fibroid" tumor. Most of the time they are correct, but occasionally they are wrong. What should a woman do if she is diagnosed with a uterine growth from an imaging study and her gynecologist recommends surgical treatment based on the presumed diagnosis that the mass is almost definitely benign? Is it time to seek a second opinion from a cancer specialist before proceeding with any surgical treatment? What could be the consequences of proceeding with the recommended surgical treatment from a non-cancer specialist, and then discovering after surgery that the presumed benign diagnosis was completely wrong? Sadly, this scenario happens much too often -- especially with uterine sarcomas. What can be done to make it happen less often?

Today was told I have three leiomyosarcoma Tunis in uterus. I'm 63. I also have nodules in my abdominal sac. Doc wants to do surgery and try to get everything out.. I am unable to eat cause tumor pressing on intestines.. love to send CT and audio to get second opinion... plus I would love to get in touch with some of people on this. Hope to hear

Hola hace tre semana me diagnoticaron con leiomisarcoma uterino cual seria la mejor quimioterapia para este tipo de cancer.

my 35 years old wife felt a swelling on her right abdomen area. upon CT we were told its a dismoid tumer and must be removed. we did the surgery and the doctor says that the tumor is completely removed. the initial pathology report says its spindle cell tumor. the second report says its benign. upon discussions the pathologist says could lead to LMS. I am confused. can I send the report to your organization for a second opinion.

thanks

Hello. My wife was diagnosed with uterine leiomyosarcoma in March 2015 following a full hysterectomy. For a while she was all clear and we hoped it may be a STUMP but it returned in her kidney, which was removed in March this year. She also has a very small 7mm tumour in her lung but there is also now a metastasis in her spine for which she insisted on radiotherapy, as the specialist hospital we attend were not going to offer any treatment? To date this is the only 'treatment', other than surgery, my wife has received or been offered. My wife is a nurse and therefore very pro active in trying to look ahead and look after herself and spot any ongoing health issues. And she reads all your information and advice. I believe we may need a 2nd opinion on her current state of health and whether treatment should be offered asap. I would really appreciate your thoughts on this and also any hope you can offer regards treatments available or on-going research. Thank you for your time and all you do in researching uterine leiomyosarcoma

I have been diagnosed with Leiomyosarcoma. and have gone through Doxorubicin and Olaratumab (4 cycles), and the tumor has not changed much Your website says that surgery was the best option, so I met with one of your surgeons. I did not take well to the chemo. The surgeon feels I need more chemo. I am just wondering why the surgery cannot be done to remove the tumor, and the chemo to get rid of any other remaining cancer. Just wondering!!!

Hi. I had a series of imaging test in Feb - Mar 2018 that revealed 2 bowel intussusuceptions and a 10mm x 11mm mass on liver. Pathology report stated mass was hemangioma. Determination due to my age, 65, no need for removal of same. Was waiting for insurance approval on small bowel study. Emergency surgery mid May to examine small bowel. To surprise of all 5cm x 5cm tumor plus suspicious growth with necrosis that may have been lymph node. Surgeon very skilled, removed with wide margins, 12 lymph nodes, and did not open to examine. Did thorough visual examine of entire small bowel. Diagnosis LMS, that would typically present in uterus. Went to sarcoma center, mass on liver is now 49mm x 40mm. Radiologist report stated metastasis, needle biopsy of liver required for confirmation. For biopsy, is it essential to do at sarcoma center? Suggested chemotherapy of Doxorubicin and Dacarbazine. If needle biopsy determines LMS in liver and therefore metastasis, plan suggested chemo first, surgery later. Do I need to physically come MSK for a second opinion? I am considering a trial, but I have only found Level I trials. Do you know of an appropriate TRIAL II or TRIAl III? Thank you in advance, for your consideration of my request for information and insight.

Hi,
In October 2016 I had a pelvic and trans vag ultrasound because I had a suspected hemorragic cyst found in July 2016. The cyst had resolved and was not present on the US, there were no fibroids and uterus measurements normal at 6.4 x 3.3 x 3.7cm. I had only 2 more periods until my last one in January 2017. Fast forward to August 2018. I am having right lower and upper abdominal pain. Duration of the right lower 6-8 weeks....I had another pelvic and trans vag US on 8/9/18. It showed on small rt ovarian cyst, 2 small fibroids and my uterus measured 8.4 x 4.3 x 6.1 cm. I have no bleeding only clear mucus discharge. I am very concerned that this is something more serious than fibroids...because how can they grow without estrogen?? Am I right to be concerned that this is something more serious? I am being referred to the local Gyn Oncology dept for further review.

Hi there, how can I get a consult? Do I need to come in person or can I send my chart/report to some there? Thank you,