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AFTER 6 MONTHS POST OP FOUND OUT THAT IS WAS "MMMT" CANCER.

nempark
Posts: 683
Joined: Apr 2010

Hi: Guys, Can you believe this, its only now I have found out from my Chemo Doc that this was the cancer I had. I initially thought that endo cancer was endo cancer I did not know that there were serious other types. i am not good at speaking up with the Doctors. Any way, my recent blood work is still very good. (ca125 is 4 went down from 12) Doc says that she cannot go by Ca125 for me only occasional cat and xray will show any signs of recurrence. I was checking out information on line and was very discouraged about the findings. I was stage 1a. If you have any information on this please let me know, I would greatly appreciate your input. Good health to all of you. June

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

I think docs sometimes forget we actually have brains and really want all the info!

There was a thread on this back in Nov '09:

"Are there any other MMMT survivors out there?"

with a number of posters you could check out.

At least you are doing well!!
Annie

nempark
Posts: 683
Joined: Apr 2010

I checked it out. Very encouraging, you have a good memory. Good health to you. June

jazzy1's picture
jazzy1
Posts: 1385
Joined: Mar 2010

June,

This is one of my cancers too. Yes I was told it's very aggressive, but don't seem to get in a tizzy over it as what can we do. The 2 small tumors in my uterus had this cancer and the only area where any other cancer was diagnosed was in one pelvic node which was adenocarcinoma, less aggressive. My doc didn't really play it up like I should be real concerned, but did tell me they don't have a huge testing of this cancer.

Give me the specifics of your cancer again and we can compare notes. I'm stage 3C. Last treatment was July '09 and today NED. Mine can go by the CA 125 as it's a great marker, but follow up is with every (now) 4 months bloodwork and pelvic exam and every 6 months CT scan. Today my CA-125 is generally 4 or 5 and holding.....yeah!

Discouraged? Yep we can get there but why start worrying are my thoughts. I'm a very positive thinker and believe I'll beat this thing, so why go downhill with worry and upset.

I always go back to Lance Armstrong who was a big athlete and still is, he had testicular cancer, found on lungs and brain. Now how could anyone even think he'd be still living some 7 + years later??? Plus he's a very competitive athlete who trains hours and hours per day.... Well...he's here and so can any of us beat the odds.

Lets compare notes...

Jan

sue K
Posts: 18
Joined: Apr 2010

Hi June and Jan
Yes my cancer was MMMT too. A very large tumour in my uterus was removed in May last year, I was then diagnosed with MMMT, stage 1c, as it had not spread beyond the uterus and endometrium. MMMT is a grade 3 and very aggressive, so I was given chemo and radiotherapy, and now I am a NED. I was told that Ca125 is not a good marker for this type of cancer, so have no idea about that. Am having 3 month check ups. My oncologist is not familiar with this type of cancer at all and is treating it as endometrial I think. He says that he looks at symptoms and is not so keen on too many scans.
Anyway, I am keeping well enough, though have lots of pains and fatigue as a result of the treatments. The important thing is to remain positive, and I am so thankful to be free of the cancer.
Good luck to you both
Sue

nempark
Posts: 683
Joined: Apr 2010

Hi Jazzy, I will write to you soon. Love june

ifaat
Posts: 1
Joined: Jul 2010

hi
my mom went in for a standard hysterectomy in march and the surgery was stopped in the middle due to the large amount of cancerous tissues the doctors saw. turns out she has a cacer that stared in the ovaries but had spread to the uterous, spleen, abdomen and lower intestants. two weeks after the surgery she had another massive surgery that took 8 hours and in the end the doctor said that they were able to take everything out. since she has had 4 out of 6 rounds of chemo (carboplatin and taxol). i have just recently found out that the type of cancer is mmmt and that when she was diagnose ahe was already at stage 3. what i have read on the internet is very upsetting and scary. wa hoping to hear fropm other people going through the same thunderstorm...

nempark
Posts: 683
Joined: Apr 2010

So sorry you had to join this group. As you are aware I do have the same as mom. It is really a very rare cancer and not much research is done on it. I made the same mistake by doing research on the internet and was devastated. But there is a silver lining, we as individuals respond to treatment differently and most comforting the internet's information is not really up to date. So I send you and mom best wishes. And don't forget we have a wonderful Creator who gives us the strength and energy and wisdom to be able to cope and endure when these monsters face us. Look into to herbs, you will find lots of information on the board about prevention. One thing is green tea, turmeric, ginger. start mom on these. You can get japanese green tea at Costco. How old is mom and how is she handling it? What about dad? Please keep us informed about her progress. As for you, try to keep positive and remember sometime or the other in life we have to face these trying situations and we have to do our best to cope in order to help mom and those around us. So don't be too hard on yourself and forget the info on the internet. I send you much comfort. June

jmullen16
Posts: 8
Joined: Jan 2009

Hello,

I am new to this board BUT wanted to post. My partner of 8 years was diagnosed with stage 3C uterine cancer 3 years ago. This October 4th will be her 2 year post-treatment CAT scan. It will be 3 years since her diagnosis. She was a healthy 42 year old when diagnosed. She had a lot of on and off back pain and bleeding. BUT, having been a college athlete and her entire life had messed up periods we thought it was pre mentalpausal bleeding. We had no idea how wrong we were or what we were in for. She had radition and light chemo, external and internal radiation for 6 months and then surgery. They decided to leave the tumor in when they saw there was lymph node involvement to protect the other organs from all the radiation she was going to have. The initial diagnosis was cervical stage 2. Her CA125 was extreamly elevated. The tumer shrunk from the size of her fist to the size of your thumb nail. However, there was enough to biopsy and found it was stage 3C uterine. The doctor kept going back and forth between that and stage 2 cervical (which we were hoping). So, when it came back that aggressive with the lymph node involvement it was 6 months of intense chemo. Now, 3 years later she seems as healthy can be! We will know for sure after October 4th. I remember when she was diagnosed tyring to find ANY positive sories. I hope this makes someone feel better. I know we are not out of the woods yet. BUT, now I actually go through days and don't think about cancer! You can make it! Stay stong and positive and enjoy each day. The funny thing is she was diagnosed in November and in October I had a roll over car accedent. I walked away without a scrach BUT realized how precious life is. The next month we found she had cancer. The bottom line is no one knows for sure how long they have! We have to fight like hell and enjoy every day we are giving.

nempark
Posts: 683
Joined: Apr 2010

Wonderful story!!Yes we do not know how long we have. Just enjoy each day. Your partner is cured. May you both enjoy each other and may God Bless you both. Thanks for the encouraging story. I love it. J.

kehoops
Posts: 4
Joined: Nov 2005

Here is a sight where you can gain information and reach out to others who are also dx'd with MMMT. My mother was dx'd 6.5 years ago and she is still going strong!!! This beast is truly a genuine beast and we need to fight it together. I wish you the best of luck in your battle with this dog!

http://groups.yahoo.com/group/UterineMMMT/

nempark
Posts: 683
Joined: Apr 2010

Thank you for your information. 6.5 years she is cured. Please tell me what grade she was and what precautions she is presently using. Thank you again and God's blessing to all of you. June

dkg1950
Posts: 1
Joined: Aug 2010

I was diagnosed last week with MMMT. Yesterday I had an MRI and CT scan and will go back to my Oncologist Thursday morning. I AM SCARED!!! It is great to hear from those of you who have survived this, because everything I am reading on-line is scary.

nempark
Posts: 683
Joined: Apr 2010

It's okay to be scared. I was diagnosed in October 2009. Instantly changed my life. I wanted to talk to you before you see your Onc. You must take a pen and a pad so you can write down info because you will not remember anything, better yet if you can have someone go with you. I guess they are going to tell you what the next step is. First of all when I was diagnosed, immediately I started on some serious vitamins, green tea, ginger, tumeric, and lots of fruits especially berries I make a smoothie everyday. Take Iron and folic acid. I will talk to you tomorrow to find out what your plans are. I can assure you that there are medicines and with good care you will be able to manage this beast. Right now you will be scared but God created us to be able to endure. You are going to be amazed at how much we are able to endure and get past these hurdles in life. Tonight I am speaking to you and its just amazing how I was just in your shoes so I know exactly what you are going through. Do your best to face and accept what you can't change at this point and do even more to conquer this. We are here and are praying for you. Please let me know how it goes with your onc tomorrow. May our wonderful Creator of this universe give you the strength, endurance and wisdom to make right choices at this time. God Bless and be well until I hear from you. Believe me, you can beat this. Big big hugs. June By The way......every thing on line about MMMT is old and no good for us. Keep away from it.

dtrmnd2live
Posts: 4
Joined: Sep 2010

Hello. I too was diagnosed with MMMT on July 23, my 60th birthday. Am awaiting the start of my treatment which as I understand will be Radiation, but my 2 Oncologists do not agree on how to do it. I am going to Sloan in NYC Sept. 16. Have you started treatment yet and if so, what is it? Have you been staged? I hope you will continue on this website, because it is comforting to have others to talk to. Am awaiting another response from June, who looks to be pretty active on this site. Best wishes and prayers to you. Hope to hear from you and others. Diana

nempark
Posts: 683
Joined: Apr 2010

I was diagnosed in October, 2009. Total Hyst. at 60. Immediately, after I was diagnosed a friend brought me some immune system builders, cell builders, a liquid called silver and iron to take before the surgery. I am convinced that they worked for me. After surgery, (only then they can stage you) I was stage 1a, Doc says the very early stage, but it is a very aggressive cancer. Of course, in these times, we can all beat this dreadful disease. I had six sessions of chemo carbo/taxol, along with anti naseau medicines which were great minimal side effects. Never lost my appetite, so I did not lose weight (laugh). I went to a great Doc at Englewood Hospital in New Jersey. Anyway, I lost my hair after the second Chemo, believe me my love, it does not matter, life is more precious than your hair at this point. I thought that I would have been devastated about the hair but I wasn't, after chemo was finished my hair started to grow back within about six weeks. I am now salt and pepper which I think looks great. Please write and let me know how you made out at Sloan. That is a great institution, you will do fine over there. May God give you to strength at this time to endure this journey in your life and may you be able to make wise decisions. I send you lots of love and comfort. June

RoseyR
Posts: 471
Joined: Feb 2011

Dear Diana,

After hysterectomy October my cancer was staged as IB MMMT with clear pelvic lymph nodes.

Am in great health otherwise; in fact, feel better than ever because of recent dietary changes.

Have just finished three rounds of taxol/carboplatin with very very few side effects (if that is your prescribed treatment will be happ to share a few supplements I was advised to take during treatment by an integrative oncologist.)

Will soon begin radiation but not sure whether to do both IMRT pelvic plus brachy or just the brachy; have had four opinions in this major city and two advocate one and two advocate the other.

What stage were you (if I might ask) and what treatment has Sloan recommended? I would really like to know.

Am also scheduled to ahve final three rounds of carbo/taxol after radiation.

It all seems very daunting but my philosophy is to try to take one day at a time. (I DREADED starting chemo but am now so relieved that the first cycle is over--and it was far easier than I could have imagined.)

Are you on the East Coast, I wonder?

Try to stay positive.

Warmly,
Rosey R.

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