Uterine Leiomyosarcoma (uLMS) Information
Symptoms of uLMS vary from woman to woman and can include:
- Heavy periods
- A rapidly growing fibroid
- Abnormal vaginal bleeding
- Abnormal or mucousy vaginal discharge
- Pelvic pain or pressure
- Pain or discomfort during sexual intercourse.
- Abdominal pain or pressure
- Abdominal bloating and distention
- Change in bladder or bowel habits
- Blockage of urinary flow
Uterine leiomyosarcoma can be mistaken for uterine fibroids. In fact, in most cases, uLMS is assumed to be uterine fibroids. Fibroids, also known as uterine leiomyomas, are benign smooth muscle tumors of the uterus that affect many women. Mainly asymptomatic, fibroids are a benign condition that may not require treatment. However, fibroids can grow in size and cause the symptoms listed above. Any woman diagnosed with fibroids must tell her gynecologist to treat each fibroid as a possible uterine leiomyosarcoma tumor.
Occurrence Rate of Uterine Leiomyosarcoma
Long Term Survivors
Hormone Receptors, Testing and Blockers
uLMS estrogen research information
The goal for treating estrogen and/or progesterone positive uterine leiomyosarcoma tumors is to block the production of estrogen. In pre-menopausal women, this treatment can include removing the ovaries (oophorectomy) or taking medication such as Zoladex or Lupron. If a patient is undergoing chemotherapy, nothing may need to be done as the chemotherapy may already be blocking estrogen production. Aromatase inhibitors (AIs) such as Arimidex, Femara, and Aromasin have been used to block estrogen being made in post-menopausal women.
For more information on uterine leiomyosarcoma and estrogen go here, and
please watch video #7 on uLMS of the LMS Boot Camp webinars.
Uterine Laparoscopic Morcellation
Sarcoma Experts and Centers
Because of its rarity and difficulty to treat, uterine leiomyosarcoma patients should seek a consultation and be seen by sarcoma experts at sarcoma centers. Studies show that patients who are seen at high volume sarcoma centers survive longer.
A Letter from the Board
Ask you oncologist to have your (stored) primary tumor tissue tested for hormone receptors – estrogen & progesterone (Er & Pr.) If your tumor is highly positive for hormone receptors – then you want to reduce the amount of estrogen in your body, because it is stimulating your tumor cells to thrive.
Give you doctor the research information on uLMS and hormones.
If you still have ovaries which are still producing estrogen – consider the option of having your ovaries removed. Your ovaries are the major producer of estrogen. You should discuss this carefully with your doctors. There are also drugs your doctor can prescribe to stop ovary production of estrogen without surgery.
If you are POST menopausal – surgically, naturally or because of chemotherapy – you can request an aromatase inhibitor (AI.) The AI blocks the postmenopausal estrogen production that is made in your fat cells and glands. Discuss side effects/benefits with your doctor. There are three AIs: Femara (letrozole), Arimidex estrogen inhibitor(anastrazole) or Aromasin (exemestane.)
You do NOT want to take tamoxifen. Several studies have found tamoxifen use to be associated with abnormal growth of uterine tissues and also associated with various uterine cancers, including uLMS.
In my own case, I have been NED (no evidence of disease) since 2004, after surgical removal of my second lung met. I then requested to have my tumor tested for hormone receptors. It expressed 99% positive for both estrogen and progesterone. I convinced my doctor to remove my still functioning ovaries. I then took Arimidex, an aromatase inhibitor (AI) for the following seven years. I have been tumor free since. This is significant due to the aggressiveness of stage IV, uLMS. I have never had any radiation or chemotherapy, just surgeries and the AI.
Since 2006, several of us with uLMS on the LMSDR Facebook group, have documented our success stories using AI’s and shared them with sarcoma researchers. We got their attention. It has resulted in two clinical trials for letrozole and uLMS. Today, the NCCN guidelines recommend AIs for uLMS with positive receptors.
I hope you follow in our footsteps and advocate for much needed research on uLMS. You can do this by sharing this information with new uLMS patients and helping to raise research funding with the Leiomyosarcoma Support & Direct Research Foundation (LMSDR.) A dear friend of mine who passed on from uLMS used to remind me, “If you want something, you have to work for it, not wish for it.”
Working not Wishing,
ULMS since 1/2002, stage IV
NED since 2004