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Are there any other MMMT survivors out there?

1975goatgirl
Posts: 1
Joined: Nov 2009

I am a 34 yr old woman who was diagnosed with stage 4B uterine MMMT. Mine had metastasized to my omentum, colon, appendix and most of my pelvic and abdominal lymph nodes. I am 3.5 years in remission. I would love to hear from other survivors. I know this is a very uncommon cancer in relation to most uterine cancers. I've never talked to anyone else with it.

My email is kisses4fluffies@yahoo.com

Thank you,

Carrie

sapna16p
Posts: 3
Joined: Aug 2019

Hey ... i wish someone is reading this ... my mother was diagnosed  with MMMT grade 1 last year and we did a radical hysteractomy and radiotherapy. post which she was in the green for some time and now she has 2 new growths in her intestine and about to go through another surgery. i know somewhere that this is not the new i was hoping for but tis there anyone out there who has a sotry similar to mine and has come out in the green to the other side. 

 

feeling dejected and alone. please help i would greatly appreciate. 

Jairoldi's picture
Jairoldi
Posts: 221
Joined: May 2017

Good morning Sapna,

I feel the pain in your post. It is so hard to sit with the unknown. I don't have any experience with what you are asking about but want to assure you that others will be along soon to share their experiences with you. 

cmb's picture
cmb
Posts: 554
Joined: Jan 2018

I'm sorry to hear that your mother's cancer has recurred so quickly, but unfortunately uterine carcinosarcoma (MMMT) is a very aggressive type of uterine cancer that can recur, even when caught early as your mother's was.

I assume that her doctor will be recommending chemotherapy after her next surgery, if her overall health permits this type of treatment. There was a recent report from a clinical trial that compared the chemo drugs Paclitaxel plus Carboplatin (PC) to Paclitaxel plus Ifosfamide (PI) in women with stage I-IV, recurrent carcinosarcoma of the uterus or ovary. This trial indicated that the PC combination treatment should be considered a standard of care for this patient population.

You can read the full summary at:

https://www.eurekalert.org/pub_releases/2019-06/no-not_1053119.php

I was diagnosed with Stage 3B MMMT in 2016. Although I have not had a recurrence yet, other women on this board have had to deal with spread of other, equally rare types of uterine cancer.

If you have more questions as you learn about what is planned for your mother, I recommend that you create a new topic. This is a very old discussion and many of the women who used to post here no longer do so.

You can always see when someone last posted by clicking on the user name in the blue box to the right of the comments. Some members like myself, have also posted information about our treatments as part of their profile.

Helping my Mom
Posts: 2
Joined: Nov 2020

Hi all 

I am from South-Africa.My Mom is diagnosed with MMMT 1b cancer. 

On examination she had a thickened endometrium of 8cm.  The endometrium was very vascular. I am trying to find out more from survivors who has been through this for some advice. We need to pay upfront for all doctors and our Goverment Hospitals is in such a bad condition and help is very bad. I have managed to get my mom in for hysterectomy. She will most probably need a bilateral oophorectomy and lymph node dissection +/- chemo or radio therapy.

 

 

please help. My Mom meens the world to me and i dont want to loose her like this 

 

regards 

M

 

 

ConnieSW
Posts: 1506
Joined: Jun 2012

I didn't have MMMT but there are others here who did.. I'm sure someone will be here soon.  Please stay with us. We will do our best to help you and your mom.

Helping my Mom
Posts: 2
Joined: Nov 2020

Thank you so much 

 

regards 

M

cmb's picture
cmb
Posts: 554
Joined: Jan 2018

Your mother is fortunate to have you with her during this time. But please keep in mind that while the initial indications are that your mother is Stage 1B, the pathology taken after her surgery will provide the definitive staging.

In my case, I was hopeful that I only had MMMT Stage 1 since my pre-surgery CT-scan didn't show any spread. But after surgery, the pathology analysis found cancer cells at the surgical margin with the parametrium. Therefore, I was staged as 3B.

However, even if your mother is fortunate enough to be finally 1B post-surgery, MMMT is a very aggressive type of cancer. Post-surgery treatment for this cancer, even in the early stages, usually includes both chemo and radiation.

See the discussion on page 47 about the treatment for MMMT and other aggressive forms of uterine cancer at:

https://www.nccn.org/patients/guidelines/content/PDF/uterine-patient.pdf

Please come back to ask any questions you have. But I recommend that you start a new topic – this topic is very old and it can be hard for people to spot the new posts. See the option to "Add a new forum topic" on the first page of the uterine board for starting a new topic.

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