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Recent MMMT Diagnosis - Seeking Advice and Support

LMPB1927
Posts: 6
Joined: Feb 2017

I made the following post this morning on the "Are There any MMMT Survivors....." thread, and received several lovely responses. One recommeded that I start a new thread altogether, so that I could better track feedback.  So here goes!  

I am an 89 year old woman recently diagnosed with Stage 4 Mullerian cancer. I lead a busy life, maintain a home, sill drive, and (for the time being) am still out and about most days. I had a hysterectomy last year and a cat scan three weeks post surgery that detected the cancer. Possible causes include having been on estrogen therapy for many decades, and taking tamoxifen during a prior bout with breast cancer (no recurrence since the 1990's). Both estrogen and tamoxifen are now listed as contributing factors to the onset of MMMT. As noted, I was diagnosed as stage 4, and given an original prognosis of approximately 6 months to live (surgery August 2016, and diagnosis in September). After a  subsequent cat scan (December) showed no signs of metastasis my prognosis was revised to (up to) 2 years. While there are no visible metastasis, my cancer antigen blood counts remain high. There was cancer present in my lymph nodes but it was too small to conduct an additional biopsy. I am happy to find this forum as this is a relatively rare form of cancer, so input or advice from others who've had a similar diagnosis, or fought (or are currently fighting) the same disease would be most welcome. My doctor has indicated chemotherapy would be of no benefit, at this point anyway, so my path forward currently involves regular check-ups, including blood tests, and cat scans every two months. I had another scan just 10 days ago, and received a fairly positive report. Of three growths/nodes, or areas they are tracking, two showed no change at all, and one showed a (new) very small growth of just a few millimeters in length. As a result there was no change to my prognosis, and the doctor is still recommending no treatment at this time. I am also making an effort to pursue healthy, cancer fighting nutrition guidelines, and as mentioned, am quite active on a daily basis and have suffered almost no pain thus far. I know this is likely to change at some point, but for now I am taking things one day at a time. I am fortunate to have a strong support group of both family and friends. Any information regarding potential treatments, or trials, or anything else someone feels might prove beneficial as I fight this battle, would be greatly appreciated. I am not interested in debilitating treatments that offer little in terms of an extended life span. That said, I might be willing to consider a difficult course of treatment if it could potentially add even a year or two to my current prognosis.  Given the rapid advances in immunotherapy, and other treatments, an extra year might make a difference with respect to new and improved therapies becoming available.

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

I may have posted on that other thread, but I don't see it now, so I'll try again.  I also was diagnosed with carcinosarcoma in June of 2015.  After my hysterectomy, I was staged at 3C2 with 4 out of 22 lymph nodes testing positive.  I underwent 6 rounds of carbo/taxol ending in Dec. 2015, and 3 rounds of brachytherapy ending 2/24/16.  My first post-treatment scan in May of 2016 was clear, but my next scan in October showed two small suspicious spots. Like you, I was told they were too small or in locations too difficult to biopsy.  Since there was no clear indication that they were indeed cancer, I decided to continue working with a naturopathic oncologist and do a follow-up scan in 3 months.  My scan at the end of January showed those two spots still there with higher uptake as well as 3 more lymph nodes that lit up.  My gyn/onc characterizes them as tiny, not life-threatening at this time, but certainly concerning.  Later this week I will be starting hyperthermia with low-moderate dose chemo along with other supportive therapies.

I was essentially asymptomatic (one night of spotting sent me to the ob/gyn) and have remained so.  I have always been healthy, eaten essentially an anti-cancer diet and exercised.  The only risk factor I had was having never had children.  I continue to be able to do everything I've always done and feel fortunate to have weathered the chemo I did do fairly easily.

You sound like you have things pretty well in hand, and it's wonderful that you are staying stable. I personally found it helpful to incorporate a naturopathic oncologist into my medical team to help boost my immune system and make my body less hospitable to cancer.  This is something you may want to investigate.

Massachusetts General has a research project specific to carcinosarcoma.  You can find information about it at: gcsproject.org.

Welcome to the board.  Glad that you found us!

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

Welocome to the club that no one wants to belong to.  You have found a great place to come for advice, information, and suppor.  The ladies here are very knowledgeable and will ing to share.  As my oncologist says " you are one tough cookie."     I dont have the same type of cancer.  Mine is Serous Papillary Endometrial Andocarcinom.  I mainly wanted to say hello and tell you we are here for support.  I have been on a number of different chemo treatments that kept me in the world for four years.  Now I am on the immunotherapy drug, Keytruda.  I have been on it since July of 2016 and am having some decent results.  Most of my tumors are shrinking or staying the same.  I have almost no side effects and feel better than I have for a long time.  I am on a compassionate use program from Merck Pharmaceutica.  

Hugs and prayers, Lou Ann

janaes
Posts: 783
Joined: May 2016

Hi LMPB1927, I was diagnosed with MMMt back in may 2016.  After my hysterectomy i was staged 2 grade 3.  I did 6 rounds of carbo/taxol.  the last three i changed from taxal to taxotere because my neropathy was increaing.  I was done with chemo october 2016 and did three bracytherapy trearments.  finished that in november.  Im curently living a pretty good life.  I do have some neropathy and have some bone and joint pain left from chemo. 

I too think you are a great woman and sound very strong in what you are doing. 

Janae

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

Hello LMBP1927, I read your original post and was blown away by your great attitude and love for life.

My diagnosis was also MMMT. After surgery, I decided to get a second opinion on both the diagnosis and recommended treatment plan before making any decisions. Not knowing where you are being treated leads me to ask if you have considered getting a second opinion, too? Also, are you being treated by a gyn-onc with experience treating MMMT? As you know, it's fairly rare cancer and not all gyn-oncs have dealt with it before.

I hope that this is helpful and look forward to hearing about your progress. Best wishes! Kim

LMPB1927
Posts: 6
Joined: Feb 2017

Hello Kim, thank you so much for the responses, and for recommending I start a new thread, instead of posting on the older one. As far as daignosis, several doctors have seen the scans, and I am fairly confident it is correct.  Deciding on the proper course of treatment is another matter however. For now, since the growth is slow, we're only doing the peridoic checkups and scans. Should the cancer become more agressive, or active we may need to consider other treatment options. And this forum has already been a big help on that front. Unless things change for any reason, I am scheduled for my next scan in mid- April. I will keep everyone posted, and in the meantime will continue to read the forum, and learn what I can from other's experiences.

LMPB1927
Posts: 6
Joined: Feb 2017

Thank you Editgrl, Lou Ann and janaes, it's great to hear from others who are fighting this battle.  The information you've provided has already given me a list of things to ask my doctor during my next visit. I would also like to ask for any suggestions regarding diet or nutrition that others think I might find helpful. I am already pursuing an akaline diet, limiting sugar, etc.  But perhaps there are other things I should be doing also. Thank you everyone!

DottieDean
Posts: 36
Joined: Sep 2017

I have just been diagnosed with mullerian and see my oncologist on tuesday.  Am nervous and having issues with anxiety.

 

 

 

DottieDean
Posts: 36
Joined: Sep 2017

New diagnosis.  See oncologist Tuesday.  

 

 

Nellasing
Posts: 529
Joined: Oct 2016

I do not have your kind of cancer but wanted to welcome you to the group and tell you that many of the ladies in this thread are still here and will more than likely be along shortly.  We will be thinking about you on Tues. What you are feeling is perfectly normal- be sure to take someone with you or record your session so that you can take in all the information at your pace- it seems like you are drinking out of a firehose at first.  You might also tell them how stressed you are and they can give you a little medical help with that- many have found that helpful especially at the beginning. 

I know it doesn't seem like it but life is not over.  You have this very day- just like we all do- to LIVE.  There are new things coming out all the time to help.  Don't let anyone tell you you have an expiration stamped on the bottom of your foot because you do not.  Come here as often as you need to ask questions and to keep us updated.   (((HUGS)))

DottieDean
Posts: 36
Joined: Sep 2017

Thank you.  I needed those words.

Kaleena's picture
Kaleena
Posts: 1978
Joined: Nov 2009

Hello Dotti:

Sorry you had to come to this site.   But welcome as the ladies on these boards are very comforting and caring.   I was diagnosed with mullerian/endometrial Stage 3a, Grade 2 because they couldn't determine where the primary was as I had it in my uterus, cervix and left ovary.   Talk about confusing.   The current records indicate it as endometrial adenocarcinoma but were treating it as ovarian.   To give you some comfort, that was 12 years ago this month.   It is a bumpy ride but you can do it.   If you need to vent or talk this is the place.   

My best to you on your upcoming tests and appointments.

Hugs.

Kathy

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

DottieDean, I was diagnosed with MMMT (Malignant Mixed Müllerian Tumor) also known as CarcinoSarcoma back in September 2015. Surgery and treatment are no fun but they are do-able. Please try to remain hopeful. We are here to help you. Kim

jodil
Posts: 42
Joined: Nov 2017

I am 59 and just diag w/ mmmt on 10/2/17 after having spotting-I had been post menopausal for several yrs. on 10/24 had radical hyster. The day before the hyst, I was required to have a colonoscopy and it was discovered it had spread to my colon. So, at the same time as hyst, I had colon surgery to remove the mass.  I am having a line installed on 11/30 and scheduled to begin chemo on 12/6.My docs, after discussing w/ "tumor board" decided to address the stage 3 uterine cancer first and then the stage 3 colon cancer. Needless to say I am terrified. Wondering how I will manage the chemo and return to work.  

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

jodil, please, take a breath.  

Everyone is different but I know the othe women will be along to tell you there experiences and helpful tips.  

I worked through it all.  I was out for the two weeks of/after surgery and then chemo was an entire day - period.  If they give you steroids, and they probably will, be sure that they step you down on your dosage over a few days.  Chemo constipates so Miralax is your new friend, and there are great anti-nauseau drugs out there.  

If you ever have questions don't hesitate to call the doctor's office and ask.  I didn't meet with a dietician who specialized in helping cancer treatment patients until I was in my radiation phase (radiation was sandwiched in between the chemo) and that was very helpful.  

I am sorry you have had to find us but you are welcomed with open arms.  There are terrific women here and you are not alone.

janaes
Posts: 783
Joined: May 2016

I was diagnosed with MMT stage 2 grade 3 May 2016. This diagnosis stuff is hard but you are not alone. I was scated too to do chemo and face all the stuff ahead.  This group helped put my fears at bay.   Please feel free to come here to share your feelings we understand and have been there.

jodil
Posts: 42
Joined: Nov 2017

thank you! I'm glad there is a palce to talk to others. 

derMaus's picture
derMaus
Posts: 561
Joined: Nov 2016

I found this website awhile back and I think it's excellent, especially the videos. I don't have this particular type of cancer, but it still helps me when I'm feeling down. 

http://gcsproject.org

 

jodil
Posts: 42
Joined: Nov 2017

thank you SO much for that website! Very hel[pful!

txtrisha55's picture
txtrisha55
Posts: 685
Joined: Apr 2011

I have not been online for awhile but thought I would respond on this thread.  I was dx in 2011 with grade 3stage 3c1 MMMT.  I had surgery. I had 6 rounds of chemo of carbo / taxol and no radiation.  It has been 6 1/2 years with no recurrence.  There is hope.  Trish

jodil
Posts: 42
Joined: Nov 2017

So good to hear your story Trish. That gives me hope. My diag/stage is the same. Start first chemo in 2 days. Planning on returning to work 12/19 and will take the 5 days off following each of the remaining 5 rounds. How are you feeling? So glad to hear you are down to annual checks. I'm trying to keep positive. 

txtrisha55's picture
txtrisha55
Posts: 685
Joined: Apr 2011

 

I can only speak for myself....the only thing that kept me going was that I had a positive attitude.  When I found out, I was a basket case for about 30 minutes in my office at work with the door closed.  I cried, I looked on the internet, which made me cry even more by what I read.   Then when I finished crying, I told myself what I had read was not me, I do not have an expiration date stamped anywhere on my body, there is only One person that knows the when, where and how I will die and this is not the day.  I told myself “Put on your big girl panties and deal with this and this too shall pass”.  Did I still have those days when I went down in a spiral of self-pity and doubt yes I did but each time I did, I would pull myself back up.  When my dr told me grade 3 and stage 3 and that it had spread outside the uterus, I told myself the reason was that I had had a DnC two weeks before the hysterectomy and that is why a two microscopic cells was found in one lymph node.  The tumor inside the uterus was a 1A but because of the those two microscopic cells it turned to Stage 3C1.  I refused to believe that it had spread.  I went through chemo with no complaints except for the muscle hurting; I shaved my head bald when my hair started falling out.  I would shave my head ever other day so I did not get stumble.  I wore my bald head proudly.  After 5 years I got my tattoo on my left arm which is my badge of honor to myself.  It is my picture on here.  I truly believe that it was my attitude and refusal to give into to everything that helped me through it.  But this all goes back to this is my story and my journey. 

 

Everyone is different, every cancer is different, every treatment and the reaction to it is different.  This is your journey and you have to decide how you are going to go through it.  Drs can give advise, nurse are there to help, even the chemo treatment center nurses are there to help you.  I do not know if you have a port yet, if not get one, do not take the chemo through your veins as the chemo does damage them.  They will give you shots before the treatment to help with nausea, allergic reaction to the chemo, drink lots of water, take a laxative as chemo does make you constipated.  Rest when you feel like it but try to walk/exercise when you feel like it.  Eat healthy.  Wishing and praying for you. trish

 

jodil
Posts: 42
Joined: Nov 2017

thank you for your ideas Trish. I got the port put in last week and am starting chemo tomorrow morning. I DID let the depression take over for quite some time but have pulled out of it. I will keep your words in my head-positive outlook. I let my spirituality go for a bit but now have reconnected to my faith which makes a big difference. I so appreciate everybody's ideas and words of encouragement.

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

Great to hear from you Trisha. I hope all is well. Congrats on your continued dance with NED.

Love and Hugs,

Cindi

txtrisha55's picture
txtrisha55
Posts: 685
Joined: Apr 2011

Thanks, yes things are still going good.  I am still working, my sister is ok, my daughter, her husband are ok. My grandon is awesome.  There are days that I can get through were I do not think about me having cancer but since I have the reminder on my tattooed on my arm it reminds me.  I am still here.  I feel like there will be not recurrence but only One knows what my life will be and what the end will be.  I keep a positive attitude.  I am on yearly checkups with my gyn onc dr now and go every August.  So far so good.  It is sad to see that this disease still has no test or cure.  So many new women getting it, so many women being told it is the effects of menapause, and just go home.  When are the drs, going to say, it could be that but let's do some more testing and research to make sure.  But then the women, and I am one of them, do not know about uterine cancer, so that is not on their radar.  It's not like breast cancer, feel a lump "light bulb" get to the dr to get it checked.  This is internal and has the same symptoms as a period a lot of the time.  I have a friend at work that was having a lot of pain and bloating, I told her to get to her dr, she waiting two years before she went.  It was not cancer but she suffered 2 years before doing something. When I started bleeding after not having a period for several years I was at my dr office within 3 days.  I then had to wait 2 weeks for surgery for a D /C, but I put it in motion.  I was not thinking about cancer and was shocked when the results were cancer.  I had a great gyn onc dr. Everything moved fast after the pathology from the DC.  Meet with the gyn onc dr on a Monday had complete hysterectomy on Friday.  Started chemo 30 days later.  Went back to work in 2 months of surgery, took off during the chemo treatments, went back to work full time in Oct.  It can be done, there is hope, keep a positive attitude and live your life everyday.  Praying for all the women and their caretakers on this site.  trish

evolo58
Posts: 293
Joined: Dec 2017

It's great to hear from you, txtrisha55! I've been following your posts, and like many here, when you don't hear from someone for a while, you fear the worst. Glad to see your're around and kicking! :)

NYLMP68
Posts: 6
Joined: Feb 2018

My mother was diagnosed in mid 2016 - had the surgery, chemo, and radiation. Scans were great then went to lung and had surgery in Nov to remove. She started having pain in January and after some ER visits with scans it shows an enlarged inguinal lymph node. Her oncologist referred her to Johns Hopkins Dr since she is better with this type of cancer. Well - she in my opinion was not helpful or hopeful. The choice is to do the Paclitaxel and Carboplatin again or that with a 3rd drug which I forget the name or nothing at all. She said there were no clinical trials available as she keeps up to date on them all. I'm at my wits end and my mother is in so much pain with only acetainphen 3 given as pain management. Do we have options other than what I mentioned? 

cmb's picture
cmb
Posts: 399
Joined: Jan 2018

As I mentioned in an earlier post, I haven't experienced a recurrence of my MMMT cancer (yet) so I'm sorry that I can't be more helpful to you right now. And I'm not sure how many ladies with MMMT recurrence are active on the board at the moment. Lately I've seen more posts from women who are recently diagnosed. Sometimes ladies will take a break from the board for a while if they aren't having any symptoms or treatment.

So if you aren't able to connect with someone here who can share their experiences, you may also want to check out the Yahoo group that is specifically for women with MMMT cancer and their families. You do have to submit a request to join the group. It can sometimes take a few days to be approved. Here's the link to that group:

https://groups.yahoo.com/neo/groups/UterineMMMT/info

Regardless of what decision your mother makes regarding future treatment, I really hope that the doctors are able to relieve her pain right now. Please make sure the doctors know how much she is suffering. Some people (me included) tend to downplay the degree of pain they are feeling and so the doctors don't get an accurate understanding of their pain level. I really had to change how I described the amount of pain I was in during treatment so that the doctors could advise and treat me correctly.

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