Recent diag carcinosarcoma (mmmt).

Options

On 8/17/17 I was diagnosed with uterine cancer after a visit to the emergency room. I am since 2 weeks post op for a full hysterectomy (56 yo) and am scheduled to begin chemo treatments 9/28.  This has all happened so quickly that I have barely had a chance to comprehend any of it! I now understand that the pathology reports from surgery show several high grade mmmt tumors with both cervical and peri lymph node involvement. Im to begin with 6 chemo sessions followed by 6 weeks of radiation. I was stunned when I started to research this type of cancer which appears to have a very poor prognosis due to its aggression and high rate of recurrence. I would love to hear (good or bad) from any one else who may be facing this rare type of cancer recently. is all the info I'm seeing really that dismal???

Thanks

Susan

Comments

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    Options
    Hello Susan:

    Hello Susan:

    Sorry to hear about your diagnosis, but welcome to this site.   I don't have exactly what you have, but all I can tell you for sure is don't look things up on the internet.   It is soooo outdated and scary.   There are legitimate sites you can look on.    One of those sites is  http://ncbi.nlm.nih.gov     I can tell you though that your treatment plan is the usual type of treatment (Carbo & Taxol).   I was given the same treatment, although they changed mine to Carbo & Gemzar and only brachytherapy.

    Give it a few days and other posters will be checking in.   Are you going to have a port?   I had one.  It really saves the veins.   I hope you are recovery well.

    My best to you.

    Kathy

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
    Options
    Welcome Susan.

    Welcome Susan.

    I'm glad you found us. There are many survivors still living wonderful lives that had a grade 3 uterine cancer. There is no reason to believe that you won't be one of us! You have come to the right place for support and information. The ladies here are open and no question is off limits.

    A couple of threads that may help you understand your chemo and radiation treatments:  'Ladies Going Through Chemo'  and  'Let's Talk About Radiation'

    I hope you take the time to read them. Lots of great information and some humor mixed in.

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

    Love and Hugs,

    Cindi

  • Sharring
    Sharring Member Posts: 24
    Options
    Thank you!

    Kathy, yes I will have port surgery on the 26th 2 days before first chemo. It is the taxol/carboplatin they are planning. 6 sessions 3 weeks apart. I wasnt given a choice but I think I'm glad for the port based on what I'm hearing.  My oncologist mentioned radiation therapy...said she left markers? during surgery but that will be after the chemo so I'm not sure what kind etc...only that it was to be for six weeks.

    cindi, thanks for those links! I'm desperate to be as informed as I possibly can and am just as desperate for support from others facing similar challenges. Ive the oddest feeling like I've got this death sentence hanging over me "maybe" lol.  And it's so hard to talk to people who don't really "know" what we are facing but I love them to death for trying!

    since this has moved so quickly I haven't met one on one with my oncologist since surgery. I have a meeting before my fist chemo appt but feel truly blessed and 100% confident that I am receiving the best care possible. I am just discouraged that, even so, this appears to be a final diagnosis that no one can predict an outcome for.  My biggest fear about recurrence is that I'm no good at knowing when or when not to seek medical treatment....which is why I ended up in the emergency room to begin with uggg.

    thanks again for replying and I hope I too can share and support as well throughout the rest of this process!

  • janaes
    janaes Member Posts: 799 Member
    edited September 2017 #5
    Options
    Susan, Hi I just wanted to

    Susan, Hi I just wanted to let you know I was diagnosed with MMMT May 20016 It was stage 2 grade 3.  Since treatment which was toxal/Carbo (half way through chemo I traded toxal for taxatere because of neropathy reasons) I have been NED. There a few other ladies on this forum are further along than that.   They sure have given mr hope.  I agree not to search the internet about the odds of this cancer.  There is a yahoo MMT support group also with alot of members.  You might be interested in that.

    With lots of love as you go forward.

    Janae

  • Soup52
    Soup52 Member Posts: 908 Member
    Options
    Welcome Sharring! I'm glad to

    Welcome Sharring! I'm glad to hear you are getting a port. It is a big help. Yes, it is so scary! I would say we all felt that way, so we all understand and will be here to support you. I was diagnosed with clear cell another agressive form. I have been clear since my treatment ended in June of 2016. This also brings up that you won't be put out to pasture after treatment ends. You will be followed with appointments afterwards at varing periods of time. Some people every 3 or four months for awhile and continuing to longer lengths of time depending how you are doing.

  • Kvdyson
    Kvdyson Member Posts: 790 Member
    edited September 2017 #7
    Options
    Susan, I was diagnosed with

    Susan, I was diagnosed with uterine MMMT back in September 2015. I scared myself silly reading about the "dismal" prognosis on the internet. What you should know is that there are many of us who were in your shoes and are still around to talk about it today. You are a statistic of one. The surgery and treatment is no fun but it is do-able. Please try to stay hopeful and let us know how we can help you. Kim

  • mwells1004
    mwells1004 Member Posts: 13
    Options
    Same Boat Susan

    I was diagnosed with carcinosarcoma stage 4 grade 3 this past march after a full hysteretomy. I just finished my treatment August 9th ( 6 rounds carbo/taxol, no radiation) for right now I am ok. I cannot agree more with the other ladies, stop looking things up on the internet! It will only scare you and make you worry and it won't do anything positive for you. The treatment sucks but you can and will get through it! Live your life and surround yourself with things and people you love. Stay strong, stay positve! -Melissa

  • Sharring
    Sharring Member Posts: 24
    Options
    Thank you all so much!

    i really have been making myself crazy searching endlessly for something positive out there. Perhaps the most important finding to date (with the help of all of you) is that I must face and fight this as it effects me directly and pray that I have the strength to stay one step ahead! Thank you all for your support. I'm sorry for anyone that must face this disease but find great hope in your sharing and encouragement. Im taking all your sugestions....putting down my iPad...reaching out to family and friends...gearing up all the strength I can muster through treatment...and resigning myself that for now we are all statistics of one.  Im offering everything I can to research throughout my journey and I hope we will see some advances in this and other "rare" cancers sooner rather than later!!

  • SandyD
    SandyD Member Posts: 130
    Options
    Also have MMMT

    Susan, So sorry you had to join us but welcome to this board. It's one of the best places on the Internet for information and emotional support for those of us with uterine and other related gyn cancers. I was diagnosed with Stage 1A MMMT/carcinosarcoma in Nov 2015. Although I have had a recurrence one thing I am learning more and more about is the wider range of treatment options now than there were in the past. Frontline treatment, typically chemo and often radiation) are effective for many women with MMMT and they do really well (much better than the gloomy statistics in those often outdated studies). Even when the cancer has spread or there is recurrence many options are available. When you go on the Internet rather than looking at the gloomy studies with statistics on survival, focus instead on learning all you can about genomic/molecular profiling, immunotherapy, targeted treatments, etc. Also a good website for those of us with MMMT is GCSproject.org.

  • survivingsu
    survivingsu Member Posts: 134 Member
    Options
    Hi Susan

    Hi Susan,

    I had a rare and very aggressive form of small cell undifferenciated uterine carcinoma 8 years ago.  The online survival information was horrible and out of date, I didn't look at it until I was well in recovery.  My treatment was immediate radiation & chemo, then internal radiation, more chemo, then surgery, and a final chemo.  It was hard, but do-able.  I am glad now that I trusted in my doctors, nurses and technicians, and didn't worry about what the internet indicated.

    Hang in there, you can do it!

    Cheers from another Susan  :0)

  • Sharring
    Sharring Member Posts: 24
    Options
    Port surgery yest and first chemo tomorrow!

    Thank you all! I really do feel strong and am trying to remain positive. I guess I just feel so ignorant and embarrassed in coming to the realization that cancer can and does sometimes win despite. On one hand I want to ignore that possibility yet on the other hand I know there are things I need to do in order to be prepared for the worse. Does that make sense? I am getting the best of care and I am good with leaving the rest in gods hands. I just feel so vulnerable in not knowing. 2...3...5 years. Reagardless it's all so little time. I'm going to fight like heck and appreciate each day along this road (even in my chemo chair!) but I feel like I need to do more. I love the support I receive here and I'm sorry for the circumstances that have brought us together. I too am praying for all and hope to share good news soon!  Thanks again for all your suppott!

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
    edited September 2017 #13
    Options
    Hey Sharring,

    Hey Sharring,

    I hope your chemo went well yesterday. You will most likely have a lot of energy today and will start feeling the effects sometime tomorrow. I think most of us go through that process of how long do we have? It probably never goes away but it does get easier with time. It also helps us appreciate each day that we have. Stay strong! You will get into a routine and be finished with this part before you know it.

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

    Love and Hugs,

    Cindi

  • ConnieSW
    ConnieSW Member Posts: 1,680 Member
    Options
    Hey, Susan

    i see you haven't stopped by since chemo. Hope things went well and you pop by soon. 

  • derMaus
    derMaus Member Posts: 558 Member
    edited October 2017 #15
    Options
    Possible MMMT Resource

    I was looking for something else and stumbled on this site, it may be of some use? http://gcsproject.org

     

  • Sharring
    Sharring Member Posts: 24
    Options
    So far so good....

    I think I did ok with my first chemo. It was def a bit better than I had anticipated.  Like most of you mentioned, I felt just fine 2-3 days and th n struggled a bit. Today is day 7 and I'm looking forward to a "normal" 2 weeks before next round.  I did sced a few xtra days off from work for next round for some extra down time. I still feel a bit like I'm frozen in time. Not sure how to move forward. But I am definitely "facing" my fears at this point. So many of you have shared how you had to learn to "live" with the life long uncertainties of cancer and that is where I'm trying to focus.  I try to remind myself that no one on gods green earth knows precisely what tomorrow will bring. So for today I'm taking deep breaths and doing something nice for myself!  I find great strength and renewed determination when I read and hear how many of you have endured your journies and so kindly share and support those like me who are just beginning!!

  • MAbound
    MAbound Member Posts: 1,168 Member
    Options
    Pamper Yourself

    This is the time to put yourself first and just give yourself permission to take whatever time you need to just get through treatment. Everything else can wait. It really can. The end does come and life does return to some degree of normalcy when it does. The thing is to focus on the now rather than angsting about anything else.  Glad to hear that you managed the first treatment relatively ok.

  • Nellasing
    Nellasing Member Posts: 528 Member
    Options
    Good Job Sharring!

    Glad you got through your first one and felt it was better than you had anticipated.  Good you are taking extra time next time.  I agree with MAbound that you need to pamper yourself, give your body time to heal and rest is where it does that.  ((((HUGS))))

  • Kvdyson
    Kvdyson Member Posts: 790 Member
    Options
    Glad to hear that the first

    Glad to hear that the first treatment went well, Sharring. Now that you know what to expect, the fear should lessen some and you can start the countdown. You can do this!

  • Jairoldi
    Jairoldi Member Posts: 221 Member
    Options
    Good to hear

    I'm glad it went okay for you. I finished my last round of chemo a week ago today and have a few weeks off before radiation begins. I found that, as many have said, that it's doable and predictable. My side effects seemed to keep to a pattern though the fatigue lingered longer with successive treatments.