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Just given the diagnosis of MMMT

MelissaJA's picture
MelissaJA
Posts: 22
Joined: Oct 2020

Uugh.  I just received the diagnosis of MMMT / carcinisarcoma.  From what I have read, the prognosis isn't very good.  I know I need to keep my head up but it's tough.

 

I am fairly young, 49, so I hope that is in my favor.  Anybody have succes beating this beast?

 

~Melissa

Theskinnyscot's picture
Theskinnyscot
Posts: 31
Joined: Dec 2019

I'm sorry that you didnt receive better news but like you say, you are relatively young and hopefully so is this tumor. I will be keeping you in my thoughts 🎗

MAbound
Posts: 1097
Joined: Jun 2016

Without going back to 2016 to look up who, I'm thinking there were a couple of ladies here who were survivors of MMMT since I've been here, but they have either moved on or don't post very often anymore. Because it's a rare cancer, there just aren't as many members who have had that particular beast. Am I right in thinking that Janaes was one who had MMMT? She still posts infrequently, but it's been awhile. In any case, these days, while they are still scary, these type 2 cancers can be survivable, but you need to expect to have both chemo and radiation after your surgery to treat it. This is one to throw the kitchen sink at in the beginning.

Love your picture and your son is so cute!! He'll be your inspiration and pick-me-up for doing what you need to do. How old is he?

MelissaJA's picture
MelissaJA
Posts: 22
Joined: Oct 2020

That picture was from a few yeras ago.  My son is now 14.  He is definitly my reason to fight this tooth and nail.

LisaPizza's picture
LisaPizza
Posts: 333
Joined: Feb 2018

Cmb was diagnosed with MMMT at the end of 2016, I am sure she'll be along - you can find her profile easily by goimg to the first topic (the FAQ), as she created that post, and click on her name to read her story. She was stage 3b and doing very well!

cmb's picture
cmb
Posts: 613
Joined: Jan 2018

Welcome, although I'm sorry that you had to find this board. I know how shocking it is to hear that you have cancer, especially one that is aggressive like MMMT. I was diagnosed with uterine carcinosarcoma (MMMT) four years ago this week. After surgery I learned that I was Stage 3B. Eight cycles of chemo and radiation followed. I have been NED (no evidence of disease) since my treatment ended in September, 2017. So even though the statistics online can be discouraging, many of them are based on old studies that don't reflect newer approaches to treatment.

If you haven't had your surgery yet, there are a couple of topics that you might helpful to read.

What do you wish someone had told you? - Includes a lot of advice from different members about what to ask your doctor(s) when you first learn you have uterine cancer.

Tips for surgery and after? - A list of suggestions for those facing their first surgery for uterine cancer.

Please ask any questions that you may have and keep us updated on your next steps. We're here to support you.

cmb's picture
cmb
Posts: 613
Joined: Jan 2018

Melissa,

I've been a little preoccupied today and forgot that you had already posted about your preliminary experiences a few days ago. I see that you've already made your list of questions to ask your doctor and have already gotten advice about getting copies of your records, etc. Did your doctor recommend a pre-surgery CT-scan? Not all doctors do, but I had one and I think it was very helpful for the doctor in planning his surgical strategy.

Have they scheduled a date for surgery yet?

 

MelissaJA's picture
MelissaJA
Posts: 22
Joined: Oct 2020

Your bio is encouraging.

My doctor has ordered a CT scan and CA125.  Surgery isn't scheduled yet but he said it would be done in the next 3 weeks.  I am going to try to schedule the CT scan for today ot tomorrow and once I get it on the books, ask to schedule the surgery as soon as possible.

cmb's picture
cmb
Posts: 613
Joined: Jan 2018

The CA-125 test doesn't seem to be a marker for me. It was 18 (still within the normal range) before surgery. It did go down to 9 and 8 the couple of times it was measured after treatment, but it's not a test I have regularly. But value of this test varies by person.

My doctor also ordered that my tumor be tested for Lynch Syndrome after surgery. Lynch can predispose a person to several different types of cancer. While both my parents had cancer, neither of their cases fit the profile for Lynch, and no one else in my family or close relatives have had cancer. So I was surprised that the tumor testing indicated Lynch, which was later confirmed through genetic testing.

While Lynch Syndrome can contribute to the usual type of uterine cancer, most studies have not found a connection to MMMT. Therefore, some doctors may not order this test. So you may also want to ask your doctor what types of genomic testing (if any) will be performed on your tumor after surgery. Knowing that I had Lynch did not change my treatment plan, but another genomic indicator might have.

MelissaJA's picture
MelissaJA
Posts: 22
Joined: Oct 2020

The pathology of my initial biopsy states the results do not indicate Lynch Syndrome.

I asked my doctor to do genomic testing and tumor assay.  I made it very clear I want to be agressive in treatment, proactive, and have no regrets.  

 

Yeo's picture
Yeo
Posts: 27
Joined: Nov 2019

Hi Melissa, I too have MMT, I was diagnosed last fall October 2019.  Stage IIIc - I finished treatment in April 2020, so far NED, I have my 6 month followup CT scan at the end of the month, so I am getting a little anxious but CMB is a beacon of hope, accompanied by my doctor's words and that is that people do survive this.  My approach to handling this diagnosis has been to stack as many cards in my favor as possible, eating right, exercise, and embracing an aggressive treatment plan, which was very doable.   This is a great site you have found here, with a really great group of supportive ladies.

MelissaJA's picture
MelissaJA
Posts: 22
Joined: Oct 2020

Best of wishes for your 6 month follow up CT!!!!!

 

I am starting to put together a plan on diet, exercise, and finding ways to keep my attitude positive.  I find myself going down the rabbit hole of depair and I need to try to stop it.

Forherself's picture
Forherself
Posts: 483
Joined: Jan 2019

It is a very hard time right now.  It sounds like you have a great plan and have communicated well your expectations to your GO.  You haven't been staged yet, so I would concentrate on getting that information.  Great you are having the CT scans.  I had robotic assisted abdominal hysterectomy.  My GO had me sign consent for both vaginal and abdominal, and decided abdominal would be better.  So I had an incision.  But I still had an easy recovery.  I did have some slight hallucinations from the pain medication.  Feel free to ask any questions.  It was the hardest time for me, waiting for staging.  I went down the rabbit hole too.  I am an RN and I was shocked at the feelings I had not been aware of in our patients who were told they had cancer.  No one knows until they hear it.

MelissaJA's picture
MelissaJA
Posts: 22
Joined: Oct 2020

Best of luck with yor follow-up!!!  I am also exercising, eating right, and pushing for an agressive treatment plan.  Keeping focused helps keep me from spiraling into depression,  I need to keep telling myself that this is survivable.  Thank you for sharing your story.

BluebirdOne
Posts: 369
Joined: Jul 2018

Forherself is right, don't be too hard on yourself. It is the most human reaction to be emotional after getting these dx. You are in the thick of it now, remember the time before and just after surgery, staging, and treatment is fraught with the unknown future. I was a puddle of emotions for about six months, now after two years NED, I am so much better, but not in denial. I was only able to cope after I let my self feel the loss, grieve for my old life, and yet try to plan for my new future. There also is no shame in asking for help via a therapist or just some anti-anxiety meds. There is no one way to approach what we all have to face and get through after our dx. As the days go by you will find yourself coping better as your knowledge of the cancer and treaments grows, knowledge is power, but you will still feel like you are on a roller coaster at times. As a very private person, it was extremely difficult to tell even my closest friends what was going on, the only person I really opened up to besides family is one of my best friends, a 40 year cancer survivor. And family can be hard because we need their support, but also need them to understand the new situation that the entire family faces. Tough stuff, but most of us find that we are tougher than we look and feel! Good luck to you and keep us informed as to your progress as you feel able.

xx00

Denise 

cmb's picture
cmb
Posts: 613
Joined: Jan 2018

For many years uterine carcinosarcoma was classified as a form of sarcoma and the chemo drugs used to treat it reflected that classification. In recent years, however, there has been a change to consider it as a high-risk variant of endometrial adenocarcinoma.

Because it's a rare cancer, there haven't been many clinical trials specifically for it, but there was one trial which concluded last year that the regimen of paclitaxel plus carboplatin (commonly used today for uterine cancer) was as effective as ifosfamide (often used for sarcomas) and paclitaxel, with fewer side effects.

https://ascopubs.org/doi/abs/10.1200/JCO.2019.37.15_suppl.5500

My medical oncologist decided from the start to treat both the carcinoma and sarcoma cells of my cancer with two different chemo regimens: 4 cycles of paclitaxel and carboplatin followed by 4 cycles of ifosafmide and doxorubicin.

I haven't read of anyone else with MMMT who had this combination regimen, but it seemed logical to me when he proposed it. I can't say which of the four chemo drugs I took were the most effective for me, but a CT-scan after chemo ended didn't show any signs of the disease.

The ifosafmide and doxorubicin combination used in my phase 2 was definitely a lot tougher to get through, but I didn't have any of the most drastic side effects these two drugs can have for some people such as neurotoxicity or heart problems.

cmb's picture
cmb
Posts: 613
Joined: Jan 2018

Until recently there was a long-time Yahoo group devoted to MMMT, but Yahoo discontinued support for those types of forums this past year.

While I'm not on Facebook, there is a Facebook page for MMMT at https://www.facebook.com/groups/carcinosarcoma

Some of the women who had previously been on the Yahoo group have moved to Facebook.

And the website at https://gcsproject.org/ has other information.

MelissaJA's picture
MelissaJA
Posts: 22
Joined: Oct 2020

Thanks.  I just requested to join that Facebook group.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2853
Joined: Mar 2013

Trish in TX is still kickin it after treatment for MMMT.  She just doesn't visit anymore but she and I have had private conversations.  She is off enjoying time with her grandson.

cmb's picture
cmb
Posts: 613
Joined: Jan 2018

NoTime,

It's great to hear that txtrisha55 is still doing well. I always looked forward to her annual NED status update as it was a hopeful sign for me too.

 

Melissa,

You can read txtrisha55's profile at https://csn.cancer.org/user/142497

She was Stage 3C. You'll see that she is now 9 years NED.

MelissaJA's picture
MelissaJA
Posts: 22
Joined: Oct 2020

Thanks.  These stories really do provide hope!

Kaleena's picture
Kaleena
Posts: 2053
Joined: Nov 2009

Hi Melissa:

Giving you hugs!   My diagnosis of Grade 2, Stage 3A was confusing because in the report they could not fine the primary.  They indicated it could either be Endometrial Adenocarcinoma or MMMT. They decided on going with the Endo but treating it as Ovarian.   My CA125 was not an indicator.   I also had them test for Lynch Syndrome 10 years later and it was negative.  My boys at the time of my diagnosis were 11, 13 and 15.   I have had 2 recurrences since then (which I found) so thats why I say be your own advocate.   You know your body.   My sons are now 26, 28 and 30.

Although my diagnosis isn't the same, I hope I have given you some hope.

Also, please don't search much on the internet unless it is a well known place because so much of it is outdated.   Check out the NCBI site.  There is also many resources here.

(((HUGS)))

Kathy

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