10 Facts About MMMT Cancer

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.

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31 thoughts on “10 Facts About MMMT Cancer

  1. Dx: MMMT Stage IIIC. 2006.
    Recurrence: 20q3
    I was able to forward the gcsproject link to one of my friends who wonders why I travel to the Midwest for trmt and don’t use a local oncologist or health svc. I tell them it’s like a 12 step program. Why would I change it if it’s working? I’m one of the few outliers. I am grateful and mystified. Keeping the faith, one 6th month visit at a time.

      1. I was diagnosed with carcinoscarma in march 2013. My oncologist Dr. pugmire fron Rochester Hills Michigan was amazing!! He told me to live my life and statistics are just that…statistics!!! It has been 4 years and I am healthy and happy!! Chemotherapy was doable…

        1. Hello Beth
          So glad to hear you have done well. Very encouraging!,

          I’ve been diagnosed with uterine carcinosarcoma stage. 1a, grade 3. I’ve just completed chemo and brachytherapy. Surgery February 2nd. There is very little information available due to the rarity of this disease

          I wish you continued good health!

          Denise

  2. How do we find a doctor that is more experienced in this? Anyone know of one in the middle of the USA?

  3. Hello!
    I’m so glad I found you. I was diagnosed with ovarian carcinosarcoma, 3c, in September, 2015. Had complete hysterectomy, removal of omentum and tumor. Then intraperitoneal and IV taxol and carboplatin. Ended the abdominal stuff early because it was damaging my kidneys, not problem with kidneys now. Had to have Erie surgery September, 2016 when adhesions were strangeling my small intestine a foot removed and a small hernia repaired.
    Here is my question! I’m trying to prevent the abdominal “biters” since the second surgery and the need for another. One attempt is seeing a massage therapist who has taught me light abdominal massage. I’m wondering if because of carcinosarcoma increased blood supply, should I be doing this massage? I’ll take any thoughts you have. So glad to have found you.
    And I’m doing very well!
    Marilyn

  4. My Mother has been diagnosed with this. Can you direct me to a list of doctors in the Northeast area of Texas. Someone good in Dallas, Shreveport or Little Rock?

  5. My Mom was diagnosed with this horrible disease in December 2007 and she passed away from it July 13, 2009. I’m so afraid that I will also develop it, but doctors say it’s unlikely due to its rareity. I sure hope they are right. Does anyone know of anyone whose Mother had it and then developed it themselves? Please let me know your thoughts. Thank you!

    1. Sorry for your loss. My Mom had MMMT of the fallopian tubes. It took forever to get her diagnosed! She was living in FL I finally got her back to New England & took her to Dana Farber, in Boston, where she was diagnosed but it was too late for much treatment. I lost her in 2005. I was told it was not hereditary I am 63 and do not seem to have any symptoms yet.

  6. My mother was diagnosed June 26 and had her complete hysterectomy with lymph nodes etc removed. Surgery was preformed July 10, 2017 at the Cleveland Clinic and we had tissue sent to the gcsproject. Is there anyone we can get in touch with to see if there is any information you could provide us based on her tissue? Her first round of chemo with ifso/taxol was cut short due to complications.
    Thank you
    Michele (daughter of Gail Mott)

  7. I was diagnosed with stage III MMMT of the ovary in Feb 2005 at age 46. Had total hysterectomy, tumor removal and colon resection, followed by 6 rounds of platinum/taxol. Healthy as a horse 12 years later. We are all statistics of one. I hope that someday there will be more research and a cure for this terrible disease, and I appreciate very much the work the GCS project is doing. I will be donating!

  8. Hi, My sister was diagnosed with MMMT (carcinosarcoma) in 2015 at the age of 46yrs.
    She received Chemo and had surgery to remove Ovaries, Uterus and the Omentum. (lining of the stomach) after treatment she was given the all clear. She had a check -up in March 2017. Everything still looked good and she was told to return in 6 months!? She started feeling unwell in June and after more tests now, in Mid Aug 2017, the cancer is back. Been looking for any clinical trials or other help. The oncologist seems disinterested and has said this particular cancer is rare and vicious. The term used was “playground bully of cancers”.
    I am devastated at the prognosis of between 6 months to 1 year life expectancy. and looking for any help….PLEASE.

  9. My sister had this cancer but unfortunately died from it 5 years ago. I now have the same symptoms as her and are awaiting a doctors appointment to discuss this with them. All the evidence points to no familliar link but I am unsure of this. I am not so concerned about myself but my girls who are now in their 20s. Can anybody give me any reassure on this matter.

    1. Hello Sue,
      I am sorry to hear about your sister and your symptoms. This cancer is very scary. Have you had genetic testing? There is one rare inherited mutation that seems to run in families called Lynch Syndrome. It is very rare but there are tests for it. Other than that, there is no evidence that this cancer runs in families. The belief is that this cancer is a result of acquired mutations which are not inheritable. I hope your symptoms are not the result of GCS.
      Best,
      Diane

    1. My mom was diagnosed yesterday. Are there any doctors near St Louis, Dallas, Houston or Phoenix? She has daughters in each city so we want to cover all of our bases.

  10. My mom was diagnosed yesterday. Are there any doctors near St Louis, Dallas, Houston or Phoenix? She has daughters in each city so we want to cover all of our bases.

    1. I assume by now you have found a Dr. However, Dr. Nora MacZura at Springfield Memorial in Springfield, Illinois is excellent-gyne/oncologist. Brachytherapy available, as well, with Dr. P. Nanavati.

  11. My mom was diagnosed with mmmt of the ovaries stage 3c in June 2016. She had surgery the next week, then had 6 rounds of chemo with taxol/carbo. The chemo didn’t help because the cancer continued to grow and spread. A new drug released for trial was introduced after finishing the first line treatment. It was called Latruvo. She had two rounds with that but the cancer was still spreading throughout the ureter, liver, ect, and she was so weak and sick. At that point they gave her 6 months to live and sent her home with hospice. She lived (really suffered) about 2 months after that and died Feb 2017. I miss her so much. My heart goes out to all of you going through this. I hope you all find the answers I’m still looking for. There is such a lack of much needed information and awareness.

  12. Hi, my name is Mariana, my mom was diagnosed last month and had sugery. We live in México City. Can you recommend me any doctor here in México that knows and treats this type of cancer? I am very scared!

  13. I was diagnosed in December 2016. Uterine Sarcosomas 1a. Complete hysterectomy in January 4 chemo treatments of taxol and carboplatin Seeing some of the comments have helped. I am from SC and my Doctor is Dr Puls Greenville Cancer Center.

  14. diagnosed in april 2015…surgery, radiation, carbo taxol, still spreading to lymph and vertebra, pelvis bones and femur…so again with more radiation, chemo (topotecan) Xgeva etc….still spreading. Any doctors in the Phx or Las vegas area?

    1. I do not yet have the name of anyone in Phoenix or Las Vegas. The closest would be in St. Louis and the doctor’s name is Dr. Matt Powell at Washington University. If you can travel perhaps an appointment with Dr. Birrer in Birmingham alabama. He holds a Carcinosarcoma clinic every Tuesday.

      I wish I could be of more help.
      Best
      Diane

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