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LizaL: Response to your request for information on uterine carcinosarcoma (MMMT) specialists

cmb's picture
cmb
Posts: 400
Joined: Jan 2018

LizaL

I created this separate topic since your original request was buried in the old, long thread on MMMT. Those old threads can be hard to navigate when looking for new posts or seeking others' advice.

You asked:

Hi I was recently diagnosed with MMMT in vaginal and cervix. I received two chemo treatments but the cancer did not respond to the treatment. My doctor suggested hospice, but I still want to fight this disease. Las Vegas has very few doctors that specializes in MMMT. Can anyone suggest doctors for me. please Help.

First of all, I'm very sorry that you had to find this site, but hopefully we can answer some questions and share information. Can you tell us more about your diagnosis and what's happened so far such as surgery, cancer stage, the type of chemo that was tried first, how it was determined that the chemo wasn't working, etc.?

While Carboplatin and Paclitaxel are often used first in treating MMMT, that drug combination doesn't work for everyone. There are other chemo drugs that can be tried such as Cisplatin, Doxorubicin, Ifosfamide, etc. I had four different chemo drugs, delivered in two phases during my front line treatment (click on my username to the left and you can read about my treatments).

I live in the Chicago area, so I don't personally know of MMMT specialists in Las Vegas. But you can seek a second opinion online with one of the leading specialists in this area at:

http://gcsproject.org/resources/video-consultations/

For myself, I saw three types of doctors during my treatments – the gynecological oncologist who performed the initial surgery and does my post treatment exams, the medical oncologist who planned and delivered chemotherapy and the radiation oncologist who planned and oversaw the external radiation sessions. While they were all very experienced in their areas, none of them specialized in MMMT. But they are all associated with a large teaching hospital in the Chicago area and researched the specifics of uterine carcinosarcoma in designing and delivering the treatment plan. Because MMMT is a rare cancer, it can be hard to find a doctor who specializes in this form of cancer. But Dr. Birrer may be able to suggest a path forward that your local doctors can implement.

While MMMT is an aggressive cancer, there are long-term survivors. So it's definitely worthwhile to seek other treatment approaches.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2614
Joined: Mar 2013

Thank you, cmb, for pulling out the post and starting a new thread.  I can't find the latest post and hopefully this will help, LizaL.

Here are gyn oncs in Las Vegas, NV:  https://specialist.foundationforwomenscancer.org/  While I don't know any of these doctors, nor worked with any of them, you will want to try to give a call.

janaes
Posts: 783
Joined: May 2016

Yea thanks cmb. I had MMMt uterine cancer stage 2 grade 3. Its been 3 years since diagnosis and i am in the clear. I would suggest you try something new as well. There is still hope. I dont know the doctors in Nevada eirher but hope you could find some that will help you. There are many people on this board who have needed to try new med that will work for them. As Cmb said my doctorss didnt specialize in MMMt either. Please know i want and hope for the best for you. 

Janae

Way22
Posts: 1
Joined: Aug 2019

Hi,

i am new to discussion boards in general so I hope I am posting in the right area. I am 67 years old and newly diagnosed, had a d&c last week for post menopausal bleeding. I’ve had PMB for over a year and had my first biopsy in-office in May 2018 which was negative  I’m still in shock to learn that I have this rare cancer and am overwhelmed with the journey I see ahead. But the few posts of survivors have given me some encouragement. I see the gyn oncologist next week to discuss surgery and treatment.  

 Wendy

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1564
Joined: Jun 2015

Wendy, Just wanted to say welcome to the board. So sorry you need to be here, but this is a great place to find answers, support and a caring bunch of people!

 

Most of us with a grade 3 cancer do follow a standard protocol of hysterectomy, chemo and some kind of radiation. While not easy, it is all doable. And, we will be here for you every step of the way. The beginning of the journey is the hardest part. You are dealing with a lot of unknowns right now. Once you get a plan together and actually start, the anxiety gets better. At least it did for me and many other ladies on this board. Don't hesitate to ask for something to help with your anxiety. This is a scary process and there is nothing wrong with getting help when you need it!

Please come back and let us know how you are doing.

Love and Hugs,

Cindi

Forherself's picture
Forherself
Posts: 241
Joined: Jan 2019

I am so sorry to hear about your new diagnosis, but you have come to a very good place to find information and support.  There is a lot of information here already.  I hope. you read other posts about new members.  You are at a point where you won't know much yet, and that is very frustrating usually.  Many women are an early stage and until you know it is very worrying.  We have all been there.  If you have specific questions, feel free to ask.  There is probably someone here who can answer it from personal expierience.  I found it reassuring to talk to women who knew what I was feeling.  I'm glad to see that you are dealing with a gynecologist oncologist already.   They will follow guidelines for treatment of what your biopsy showed.   Let us know how your vist goes.  If you can take along another person.  It will be a lot of information to absorb all at once and they can help remember all the information you will receive.   

Feelingalone74
Posts: 236
Joined: Jun 2019

Hi Wendy, So sorry for what you are going through. You are in good hands on this discussion board.  I just started my treatments 1 month ago. The ladies on here have been so helpful, informative, encouraging and supportive to me and I know they will be to you as well.

Your in my thoughts. good luck with your appt next week. we will all be here for you!

Feelingalone74
Posts: 236
Joined: Jun 2019

Hi Wendy, So sorry for what you are going through. You are in good hands on this discussion board.  I just started my treatments 1 month ago. The ladies on here have been so helpful, informative, encouraging and supportive to me and I know they will be to you as well.

Your in my thoughts. good luck with your appt next week. we will all be here for you!

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2614
Joined: Mar 2013

Wendy, it is overwhelming so try to take a breath.  There are good women here and lots of good (older) posts to review.  Don't hesitate to ask anything.  It is good to hear you were referred to a gyn onc.  They specialize in gyn cancers and will be best be able to help - but don't be afraid to push for answers and be your own advocate.  It is scary, but don't be afraid to ask questions.

cmb's picture
cmb
Posts: 400
Joined: Jan 2018

I second Forherself's suggestion to have another person with you when you meet with the gynecological oncologist next week. It's a lot to take in all at once.

A few things you should ask about:

1. Will you have a pre-surgery CT-scan?

While some doctors are reluctant to order scans because of the radiation they expose the patient to, I was happy that I had a scan before surgery so that the doctor would have some idea of what he could expect to find during surgery.

These scans aren't perfect. My scan didn't show any tumors outside the uterus, which suggested that I would be Stage 1. However, the pathology found cancer cells at the surgical margin with the parametrium, which upped me to Stage 3B. But I was still glad that I had the pre-surgery scan as this served as the baseline comparison for future scans.

2. Will you have a CA-125 test before surgery?

This blood test is elevated in some women with uterine cancer, although it is more often a sign of ovarian cancer. The CA-125 test can be a helpful marker to monitor a future recurrence for those women in whom it is elevated before treatment.

3. Will any genomic testing be performed on the tumor?

Tumor testing identifies the specific pattern of genetic mutations in a person’s cancer. For some, this testing may lead to better understanding the cancer, and possibly how to treat it. In my case, the tumor was tested for the genetic mutations associated with Lynch Syndrome. When the pathology indicated that I might have inherited these "mismatch repair genes" I had later genetic testing to confirm this indication. Lynch Syndrome predisposes me to several types of cancer, especially colon cancer.

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