MMMT

Ro10

Ziva said:

MMMT

Hi Ladis. I am new. I was diagnosed with Ovarian MMMT last Oct, 2014. Stage 3c. I don't here many people having the Ovarian type very often. It is treated slighly different than the uterine mmmt. I was told that Ovarian is even more rare than the Uterine. I am 57 years old and had always been in good shape and good health. I never had even a cold before this. It's very hard to understand why people get this.My onocoligist even told me I was not the typical cancer patient. Everything you read about this I had already did all the precautionaries. Like having at least one child, hysterectomy, not over weight, active and so on. My Dr. couldn't give me any answers. I have gone through the 6 chemo treatments rather easily. The only negative outcome was neuropathy in my feet. And I gained weight. I go every 3 months for a CT, bloodwork, and physical examination. I do have two spots on my lungs that are being watched. I did have a spot on my spleen being watched and it had gotten larger so last time instead of a CT I had an ultrasound. It was gone! I was told more than likely it was a cyst. I feel pretty good. In Dec. my body has started aching for no reason. Just areas at diferent times. I will be asking about that at my next visit. Bu if I have to live with that discomfort I don't care. As long as it's not this cancer. So this is me and my life. I hate hearing of other people having this but it is also nice to have somebody to talk to who understands. I hope everybody is doing well.

Ziva

if you put MMMT in the keyword box on the first page you will find many other posts regarding MMMT.   Welcome to the site, but so sorry you have to be here.  May you continue to feel better.  In peace and caring.

NoTimeForCancer

Ziva said:

MMMT

Hi Ladis. I am new. I was diagnosed with Ovarian MMMT last Oct, 2014. Stage 3c. I don't here many people having the Ovarian type very often. It is treated slighly different than the uterine mmmt. I was told that Ovarian is even more rare than the Uterine. I am 57 years old and had always been in good shape and good health. I never had even a cold before this. It's very hard to understand why people get this.My onocoligist even told me I was not the typical cancer patient. Everything you read about this I had already did all the precautionaries. Like having at least one child, hysterectomy, not over weight, active and so on. My Dr. couldn't give me any answers. I have gone through the 6 chemo treatments rather easily. The only negative outcome was neuropathy in my feet. And I gained weight. I go every 3 months for a CT, bloodwork, and physical examination. I do have two spots on my lungs that are being watched. I did have a spot on my spleen being watched and it had gotten larger so last time instead of a CT I had an ultrasound. It was gone! I was told more than likely it was a cyst. I feel pretty good. In Dec. my body has started aching for no reason. Just areas at diferent times. I will be asking about that at my next visit. Bu if I have to live with that discomfort I don't care. As long as it's not this cancer. So this is me and my life. I hate hearing of other people having this but it is also nice to have somebody to talk to who understands. I hope everybody is doing well.

Ziva, I am sorry you have had

Ziva, I am sorry you have had to find us an hear there is yet another form of this horrible disease.  May your aches ease and you have good results.

Kaleena

KayBB and Ziva

So sorry you ladies had to meet us here!   As you will soon find out, although we are labeled under one roof, there are so many different types of cancers just in this one catagory.   As many others have already mentioned, question your doctor until you understand.    It is right to question and no doctor should get mad or irritated if you do.   Also, don't let your physician just push you through the process.    They deal with so many woman that sometimes it just happens.   You have to stop and slow them down.   It is so scary the first time being diagnosed that we just take for granted that you can't ask questions and such.   So take a deep breath and get all your questions down.

When I was first diagnosed, it was found after a hysterectomy and so a total surprise.   Had to go back in for staging surgery.   Final diagnosis was Endometrial Adenocarcinoma Grade 2 Stage 3a found in my uterus and ovary however it did indicate that it could possibly have been mesonephric duct carcinoma but said is was most likely from the pelvic endometriosis.  Final ruling was mullerian/enodmetroid origin of the tumor - which I just now saw!  They never did find the primary site.

I did have a port - in fact I had it in for over 6 years - probably because they were never sure where the primary site was from.   Did the chemo as a precaution.   Then had 3 brachytherapies.  I was 45 at the time and now 54.  

As the others have said, don't research on the internet.  The stuff there is outdated.   treatments have come a long way.   There are reputable sites as others have said.

This is a good place to vent and to ask questions before your appointments.    This site has helped me so much.

Just let you know you both are very welcomed here and we will be here for any support you need.

My best to both of you.

Kathy

Ziva

MMMT

Thank you for the welcoming. This cancer is very frustrating to me. I had also had a hysterectomy prior to this cancer, I had my hysterectomy over 10 years before this cancer attacked me. I had no bleeding. The only symptom I had in the beginning was my bladder was starting to fall and I had to urinate constantly. I went to my Dr. twice and she sent me home with premarin cream. I then started to get cramps, went to the Dr. again and was told I probably pulled a muscle. Cramp went away but later came back a month later. I figured I pulled a muscle again and never went back to Dr. At the time I had my hysterectomy the Dr. I had do this had said my bladder was drooping and he tacked it back up at that time. So when my bladder seemed to be getting worse I went back to him and told him my symptoms and he said it wasn't my bladder and did an ultrasound. That is when the mass was found. It was the mass that was causing my bladder to fall. If I hadn't gone back to this Gyn. I would have never known. After my surgery the Dr. came into my room and told me it went very well and the prognosis was good.  This is before the pathology report came back as MMMT.  I knew Ovarian cancer was bad but when he came back and told me about MMMT my stomach turned. The right ovary was 14.9 cm and the left was 7.8 cm. I would also like to inform anybody who reads this that I was told because I am a small person I will be able to feel my ovaries if they were to enlarge. WRONG. The Gyn. and my onocolist could not feel the masses. I pray every night to be cured but I know it will be this cancer that will end my life. But I am hoping it will be later and not sooner.

KayBB

Kaleena said:

KayBB and Ziva

So sorry you ladies had to meet us here!   As you will soon find out, although we are labeled under one roof, there are so many different types of cancers just in this one catagory.   As many others have already mentioned, question your doctor until you understand.    It is right to question and no doctor should get mad or irritated if you do.   Also, don't let your physician just push you through the process.    They deal with so many woman that sometimes it just happens.   You have to stop and slow them down.   It is so scary the first time being diagnosed that we just take for granted that you can't ask questions and such.   So take a deep breath and get all your questions down.

When I was first diagnosed, it was found after a hysterectomy and so a total surprise.   Had to go back in for staging surgery.   Final diagnosis was Endometrial Adenocarcinoma Grade 2 Stage 3a found in my uterus and ovary however it did indicate that it could possibly have been mesonephric duct carcinoma but said is was most likely from the pelvic endometriosis.  Final ruling was mullerian/enodmetroid origin of the tumor - which I just now saw!  They never did find the primary site.

I did have a port - in fact I had it in for over 6 years - probably because they were never sure where the primary site was from.   Did the chemo as a precaution.   Then had 3 brachytherapies.  I was 45 at the time and now 54.  

As the others have said, don't research on the internet.  The stuff there is outdated.   treatments have come a long way.   There are reputable sites as others have said.

This is a good place to vent and to ask questions before your appointments.    This site has helped me so much.

Just let you know you both are very welcomed here and we will be here for any support you need.

My best to both of you.

Kathy

Radiation

I have just finished three rounds of chemo.  I was surprise that I did not feel or get sick.  I only side effects were joint pains and constipation.  Oh don't let me forget the chemo fog.   It would take me around  9 to 10 days before I started feeling stronger.  Tomorrow I am meeting with the doctor about radiation and  having a CAT scan.  I have fear about the c-scan but know this will happen each time.  The unknown and fear go together.  I thank everyone for sharing and it helps me and gives me hope that I can fight this.  It is a part of my journey in life.  I am thankful for the day.  It has been wonderful and  I get to spend some time with my nephew and his wife.  I am thankful I have the support of my family, friends and thankful for the experience, strength and hope that each of you share.   I will be taking 6 weeks of radiation and then three more rounds of chemo.  Thank you everyone and peace be with you and your families. 

KayBB

KayBB said:

Thank you for sharing Trash

In the beginning I was so afraid and I have to be truthful there are times I still am.  I know that God is giving me strength and courage to fight this.  I have to much to live for.  When the fear comes, I come to this web site and it helps a lot knowing that I am not alone.  I have faith that I can fight this and I thank each of you ladies for sharing.  I have a great support group here in North Carolina that are here for me and I for them.  I feel blessed and try to have a positive attitude.   Yesterday was a beautiful day with my family that I haven't seen for sometime.  Tired today but going to rest.  Thank you again Trish

Thank you for sharing Trish

Just realize I typed trash instead of Trish.  

KayBB

3a Carcinosarcoma of the endomtrium

Dr Appointment went well today.  I met with my radiation doctor and I had a cat-scan.  I woke really nervous and afraid what the results were going to be from the cat-scan.  Didn't find anything and getting ready to start radiation January 26 for six weeks.  Hope I do as well with radiation as I did with the chemo.  Still have more chemo after radiation.  I got to say that I really have a lot of trust with my team of doctors.  Grateful for today.

NoTimeForCancer

KayBB said:

3a Carcinosarcoma of the endomtrium

Dr Appointment went well today.  I met with my radiation doctor and I had a cat-scan.  I woke really nervous and afraid what the results were going to be from the cat-scan.  Didn't find anything and getting ready to start radiation January 26 for six weeks.  Hope I do as well with radiation as I did with the chemo.  Still have more chemo after radiation.  I got to say that I really have a lot of trust with my team of doctors.  Grateful for today.

KayBB, I would say the one

KayBB, I would say the one thing we ALL have noticed as a side effect of radiation is FATIQUE.  My recommendation is not to fight it and SLEEP.  Radiation can continue to work for up to six weeks, so be gentle on yourself. 

Linda1234

cleo said:

August 2007. Aged

August 2007. Aged 66  Excellent health! Bleeding first sign.   Stage 3/4 carcinosarcoma of endometrium with pelvic and para-aortic lymph nodes and bladder metatstases.

Today.  No recurrance.  My advice...do not research [many would disagree] and stay positive.   I wish you well.

Great to hear

Great to hear someone doing so well with this awful disease 7 years later! I hope to see a lot more "success stories" and thank you women for sharing your wisdom to navigate through this journey.

Jefflax1

MMMT

Friend's mother was just dx'd MMMT by biopsy and ultrasound.  Is it safe to see surgical oncologist in a week rather than a day or 2? 

Forherself

Jefflax1 said:

MMMT

Friend's mother was just dx'd MMMT by biopsy and ultrasound.  Is it safe to see surgical oncologist in a week rather than a day or 2? 

Hi Jeffflax

Sorry to hear about. your friends mother.  The time of one week is pretty standard and acurally some people wati a lot longer. It is scary and It's understnad able that your friend wants his mother seen in a day.  A few days is not reported to make a difference to stage.  If she has questions she can come here and ask. She will be having a hysterectomy and staging surgery. That is usually done by the doctor you are calling an oncologist.  For uterine cancer, they are the same person.  A gynecological oncologist will be the specialist she sees.  Do come back iwth any questions you have for them.

NoTimeForCancer

Jefflax1, I agree with

Jefflax1, I agree with Forherself, she will want to work with a gynecologic oncologist.  It is all overwhelming and scary, so please feel free to come back and ask us anything.  The women diagnosed and ALL their loved ones are welcome here.  She is not alone.

I Got This

Newly diagnosed with MMMT

This is the first time I have even used a blog but thought I needed to talk to someone/anyone out there that can provide some support.  I just found out today that I am dealing with MMMT.  I am normally quite healthy and active so this has been a real punch to the gut.  My dr. consultation just this morning went well and I believe that she provided good guidance.  I have my pre-op and CT scan this monday (1/25) and they are quickly getting me in to surgery on 1/27.  Its moving quickly and I am feeling that I'm in some sort of nightmare all day today.  I am 65 years old and just getting to the perfect time of my life for travel and celebration not for what I think I might be up against.  Have not been staged yet but can tell you that without the bleeding I would not have any idea I am truly sick!  I need a positive story from someone......

cmb

I Got This said:

Newly diagnosed with MMMT

This is the first time I have even used a blog but thought I needed to talk to someone/anyone out there that can provide some support.  I just found out today that I am dealing with MMMT.  I am normally quite healthy and active so this has been a real punch to the gut.  My dr. consultation just this morning went well and I believe that she provided good guidance.  I have my pre-op and CT scan this monday (1/25) and they are quickly getting me in to surgery on 1/27.  Its moving quickly and I am feeling that I'm in some sort of nightmare all day today.  I am 65 years old and just getting to the perfect time of my life for travel and celebration not for what I think I might be up against.  Have not been staged yet but can tell you that without the bleeding I would not have any idea I am truly sick!  I need a positive story from someone......

Welcome

I was diagnosed with Stage 3B, Grade 3 uterine carcinosarcoma (MMMT) in November, 2016 at age 61. So I know how shocking a cancer diagnosis can be, especially when it's an aggressive type like MMMT. But I'm still NED (no evidence of disease) since my treatment ended in September 2017. You can read about the specifics of my cancer experience by clicking on my username (cmb) in the blue box to the left of this text.

It's good to hear that you'll be getting a pre-op CT-scan. While you won't be staged until after you have surgery, the scan can give the doctor a better idea of what to expect during the operation. It also provides a good baseline for comparison during/after the post surgery treatment that will most likely be recommended.

If you haven't already, I recommend that you read a couple of past discussion topics: What do you wish someone had told you?  and Tips for surgery and after?  These can be very helpful when a diagnosis is so new.

Please ask any questions you may have over the next few days and after your surgery next week. We're sorry that you had to find this site, but we want to support you as you begin this journey that none of us wanted to take.

ConnieSW

Just a couple comments

I am so glad you found us as early as you did..I was months into treatment before I discovered this site.  The links cmb provided will give you something to help keep your mind occupied while you await surgery. I found the time between diagnosis and surgery to be the most stressful. 

Good luck next week. I marked your surgery date and will send good thoughts your way.