The story of MMMT cancer is not a simple one. To start, the name “MMMT” is being replaced with the term “Carcinosarcoma”. While “Carcinosarcoma” is now considered standard, MMMT (or Malignant Mixed Müllerian Tumor) has a lengthy history within gynecological literature and is expected to continue to be used.
MMMT is a rare cancer found in the uterus, ovaries or fallopian tubes. So we might see “Ovarian Carcinosarcoma” or “Uterine Carcinosarcoma” or just “Gynecological (GYN) Carcinosarcoma” or “GCS” to encompass carcinosaromas of the reproductive tract. For the purpose of this post, we will use the term MMMT.
With these 10 facts, we hope to shed some light on MMMT’s history and current state.
1. MMMT is rare.
Less than 1,000 cases are diagnosed each year. MMMT of the fallopian tubes is most rare, ovarian is more common, and uterine the most common. The rare nature of MMMT has made it difficult to study and thus to adequately treat.
2. You cannot prevent MMMT.
Right now, we have no idea what causes MMMT. There are some risk factors but few that can be directly linked to this disease. Some of the risk factors include nulliparity (meaning women who have never had children), advanced age, obesity, exposure to exogenous estrogens and long-term use of tamoxifen.
Maybe obesity can be managed, but as far as the other risk factors, advanced age seems to be a good thing, having a lot of kids may protect me but too late for that, and long term use of tamoxifen is used to prevent breast cancer reoccurrence. If I avoid tamoxifen, am I more likely to get a reoccurrence of breast cancer or avoid MMMT or both? What are we to do?
3. No clear link to actionable genetic mutations… Yet
You may be tested for genetic mutations that you were either born with or acquired along the way. Acquired gene mutations are the most common cause of cancer. Acquired mutations occur from damage to genes that happens during a person’s lifetime, vs. inherited mutations, which get passed on from parent to child. Learn more about the types of genetic mutations with cancer.
Presently, most Malignant Mixed Müllerian Tumors (MMMT) are thought to occur by chance without an association to inherited mutations. However, there have been rare reports of MMMT of the uterus developing in individuals with Lynch syndrome, an inherited condition in which individuals have a genetic predisposition to develop certain cancers including uterine cancer.
The GCS Project is focusing on gene sequencing to map gene mutations that will hopefully lead to actionable genetic events and effective courses of treatment. Learn more about the scope of research.
4. MMMT is difficult to detect in early stages.
Currently, there is no lab or imaging test that can screen for MMMT in the early stages. Unlike the PAP test for cervical cancer, the reproductive organs are not readily available for cellular evaluation. Also, cancer tumors tend to be very sneaky and do not cause pain. The first sign of a problem is when the tumor has invaded something that will cause bleeding or pain — such as post menopausal bleeding or a metastatic lesion that pops up as an umbilical hernia (like mine), or gastrointestinal distress, something as mild as bloating. By this time, the cancer has probably reached a reached a late stage of metastasis.
5. MMMT Diagnosis is challenging.
Since MMMT is rare, doctors do not usually think of this diagnosis when the patient presents with symptoms. If you are pre-menopausal, your doctor may attribute your symptoms to impending menopause. Upon exam, a woman may present with an enlarged uterus or a pelvic lump or anemia. Routine assessment will include some blood work, imaging such as ultrasound, and CT scans. However, the gold standard for MMMT diagnosis is a biopsy.
6. Treatment of MMMT is variable.
There is no standard treatment for MMMT. MMMT is generally treated like ovarian cancer. However, sometimes it behaves like an epithelial ovarian cancer, and sometimes like a uterine sarcoma. Treatment depends on the stage at which the disease is diagnosed and if advanced, the metastatic pattern. Some women respond well to carboplatin and taxol, and others have no response to it. We don’t know why. Some women are cured with surgery while others have repeated recurrence of their cancer. There are some protocols that use radiation, and others view radiation as ineffective. Unfortunately, current treatments have not yielded improvements in Long Term Survival in over 40 years. We need research to focus on MMMT instead of treating MMMT like other GYN cancers.
7. All GYN Oncologist are NOT the same.
If you are diagnosed with MMMT, seek an GYN Oncologist who has experience with MMMT. You may have to search throughout the nation. Keep copies of all of your medical records and get help in interpreting test results. Seek a second or third opinion. Our cancer is rare and many GYN Oncologists will only see 1 or 2 cases a year. That is not enough to be an expert. There is so much variation in treatment and the way patients respond, we need to see physicians who can look beyond guideline based interventions and seek solutions that consider our unique characteristics.
8. New Targeted Therapies show promise.
Cancer researchers believe that the real breakthroughs in cancer treatment are in Precision Medicine or the development of Targeted Therapies specific to cellular growth. Targeted cancer therapies are drugs or other substances that block the growth and spread of cancer by interfering with specific molecules (“molecular targets”) that are involved in the growth, progression, and spread of cancer. Targeted cancer therapies are sometimes called “molecularly targeted drugs,” “molecularly targeted therapies,” “precision medicines,” or similar names. Here is a link to the National Cancer Institute website that discusses targeted therapy in more specific terms: National Cancer Institute – Targeted Cancer Therapies.
There is so much research literature on targeted therapy that I find it confusing. Does any of it show promise for our cancer? It is hard to navigate the through all the clinical studies and find ones that are relevant. That is why we started this website. We hope to be able to help people to navigate through all the science and find and fund studies to help us.
9. We NEED research focused on MMMT now!
Something that is unique and rare such as the “Unique Pink Diamond” usually attracts a lot of attention. Not so with a unique and rare cancer. Those of us with a rare disease are really on our own to get the attention of the scientific community. That is why we started The GCS Project. We have partnered with Mass General Cancer Center and the Broad Institute, two world-class research institutions, to dedicate research towards finding a cure for MMMT. There are many breakthroughs happening with other cancers and they can happen for MMMT too. Good research takes time to show results, and we are just getting started. The researchers may have a quick breakthrough, or we may need to be patient. But one thing we knew for sure is that until we got started, nothing was going to happen.
10. You can help progress MMMT research.
Donations to Ovarian Cancer (for instance OCRF or OCNA) DO NOT fund research on rare ovarian cancers such as MMMT. The money donated to those types of funds is directed solely towards cancers that are not rare, cancers that many people have.
Until The GCS Project, there was no dedicated research for MMMT. If you are diagnosed with MMMT or know someone who is, please consider a donation to The GCS Project. All of your donation goes to the science.
Promotion of The GCS Project is solely run by volunteers. None of your money goes to fund this website or administration costs. Dedicated volunteers are working hard to get the word out about The GCS Project because they believe in it. It is the strongest hope we have to find a cure for MMMT. Please visit http://gcsproject.org/donate/ to make a direct donation to the study and more effective treatment of this disease.