Specialists in Uterine MMMT/carcinosarcoma

Hello all-I am on the hunt for recommendations! We are looking for second opinions, and would like to talk to a gynocological oncologist and surgeon that specializes in Uterine MMMT/carcinosarcoma.  We are located in Asheville, NC, but if the Drs are wonderful-positive and committed, we are willing to go just about anywhere!  Thank you so much!  

Comments

  • Diana7755
    Diana7755 Member Posts: 7
    I have stage 3 MMMT,

    I have stage 3 MMMT, diagnosed this past November,  and go to The University of Virginia hospital in Charlottesville VA.  I couldn't be more pleased with my doctor and the Emily Couric Cancer Center.  I asked her if I wanted a second opinion where she would send me - Duke University and John Hopkins. 

  • Diana7755
    Diana7755 Member Posts: 7
    edited August 2016 #3
    See my new post

    There has not been much research for MMMT in many years unfortunately. 

    Keep me posted if you find any useful information. 

  • brissance
    brissance Member Posts: 192
    edited August 2016 #4
    Duke

    Duke is listed as one of the better cancer center and is in North Carolina.  They may be able to answer your questions about specialist in MMMT.  I am brazen enough to set up an appointment, get check then ask them where the best MMMT treatment can be obtained.  Doesn't hurt to ask!  (My Oncologist actually mention Duke as one of the leaders in Uterine Cancer treatment.)

  • Shcolwell
    Shcolwell Member Posts: 6
    Diana7755 said:

    I have stage 3 MMMT,

    I have stage 3 MMMT, diagnosed this past November,  and go to The University of Virginia hospital in Charlottesville VA.  I couldn't be more pleased with my doctor and the Emily Couric Cancer Center.  I asked her if I wanted a second opinion where she would send me - Duke University and John Hopkins. 

    Thank you-very helpful-I have

    Thank you-very helpful-I have family near Hopkins, so that's good too!

  • Shcolwell
    Shcolwell Member Posts: 6
    brissance said:

    Duke

    Duke is listed as one of the better cancer center and is in North Carolina.  They may be able to answer your questions about specialist in MMMT.  I am brazen enough to set up an appointment, get check then ask them where the best MMMT treatment can be obtained.  Doesn't hurt to ask!  (My Oncologist actually mention Duke as one of the leaders in Uterine Cancer treatment.)

    I'm getting on the phone

    I'm getting on the phone Monday!!!! THank you! 

  • Kvdyson
    Kvdyson Member Posts: 790 Member
    MMMT Gyn-Onc

    Shcolwell, I was diagnosed with stage 1b, grade 3, uterine MMMT in Sept 2015. I have been NED since June 2016 after treatments.

    My doctor is in Clearwater, FL (Dr. Hector Arango of Westcoast Gynecologic Oncology). I received a second opinion at Moffitt Cancer Center in Tampa. Both are wonderful options (although I highly recommend Dr. Arango).

    Are you a member of the Yahoo or Facebook MMMT groups? There are a lot of wonderful members on both who are willing to share their experiences and would be happy to refer you to their doctors as well.

    Good luck to you and try not to panic. From my experience and those that I've read about here and on other sites, MMMT seems to be no better or worse than any other uterine cancer and can be treated effectively. Kim

     

  • txtrisha55
    txtrisha55 Member Posts: 693 Member
    Stage 3 C1 Carcinosarcoma

    Stage 3 C1 Carcinosarcoma dignosed in 2011 at UT Southwestern in Dallas, Tx.  My Gen Onc Dr. is Jayanthi Lea.  Throughout her career, Jayanthi Lea, M.D., has been at the forefront of evaluating and treating gynecologic cancers. Her patients range from young women to senior citizens diagnosed with cervical, uterine, endometrial, ovarian, and other types of cancers of the reproductive system. She brings together all aspects of care – from evaluation and staging of the disease to treatment.   http://profiles.utsouthwestern.edu/profile/45963/jayanthi-lea.html.

    She is wonderful and caring.  Takes time to explain things to you and makes recommendations and backs up those recommendations with facts.  I am five years clean with no recurrance as of 22 Aug this year.

    She does review cancer reports as I have referred others to her.  I would recommend her to any of my family, friends, co-workers and strangers.  She is a great doctor.

    Wish you the best. trish

     

     

     


     
  • janaes
    janaes Member Posts: 799 Member
    Kvdyson said:

    MMMT Gyn-Onc

    Shcolwell, I was diagnosed with stage 1b, grade 3, uterine MMMT in Sept 2015. I have been NED since June 2016 after treatments.

    My doctor is in Clearwater, FL (Dr. Hector Arango of Westcoast Gynecologic Oncology). I received a second opinion at Moffitt Cancer Center in Tampa. Both are wonderful options (although I highly recommend Dr. Arango).

    Are you a member of the Yahoo or Facebook MMMT groups? There are a lot of wonderful members on both who are willing to share their experiences and would be happy to refer you to their doctors as well.

    Good luck to you and try not to panic. From my experience and those that I've read about here and on other sites, MMMT seems to be no better or worse than any other uterine cancer and can be treated effectively. Kim

     

    Hey kim where do I find that

    Hey kim where do I find that MMT yahoo support group?  Do i need a yahoo email account?  I looked around a bit and could not find it. 

    Ya i was dignosed with MMT uterine cancer in May 6016.  Im doing chemo right now and the plan is to do internal radiation after i am done.  My doctor had been pretty good.  I wouldnt say he is a specialist.  The pathologists found the MMT cancer before sugery through a byopsy and after surgery  the pathologists still found that kind of cancer but not as much as they originally thought.  They stll recomended chemo and internal rediation.  I too am hoping for the best in the outcome.  I have a while to go for that but am greatful for others who have gone before.  It doesnt do me any good to worry to much about the future.

  • Kvdyson
    Kvdyson Member Posts: 790 Member
    janaes said:

    Hey kim where do I find that

    Hey kim where do I find that MMT yahoo support group?  Do i need a yahoo email account?  I looked around a bit and could not find it. 

    Ya i was dignosed with MMT uterine cancer in May 6016.  Im doing chemo right now and the plan is to do internal radiation after i am done.  My doctor had been pretty good.  I wouldnt say he is a specialist.  The pathologists found the MMT cancer before sugery through a byopsy and after surgery  the pathologists still found that kind of cancer but not as much as they originally thought.  They stll recomended chemo and internal rediation.  I too am hoping for the best in the outcome.  I have a while to go for that but am greatful for others who have gone before.  It doesnt do me any good to worry to much about the future.

    Link to MMMT Yahoo site

    Hi Janea, here is a link to the Yahoo site:

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

    It will make you apply for membership in order to join. It took about a week for me to be approved. Kim

  • janaes
    janaes Member Posts: 799 Member
    Kvdyson said:

    Link to MMMT Yahoo site

    Hi Janea, here is a link to the Yahoo site:

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

    It will make you apply for membership in order to join. It took about a week for me to be approved. Kim

    Hey Kim thanks so very much

    Hey Kim thanks so very much for taking the time to find that link for me. 

    Hugs, Janae

  • Diana7755
    Diana7755 Member Posts: 7
    Chemo

    Has anyone had Cisplatin? I have just had my second round and has made me feel so aweful...

     

  • Kvdyson
    Kvdyson Member Posts: 790 Member
    Diana7755 said:

    Chemo

    Has anyone had Cisplatin? I have just had my second round and has made me feel so aweful...

     

    Hi Diana, I did not have

    Hi Diana, I did not have Cisplatin so I can't offer you any help there. Have you contacted your oncologist's office? They may be able to give you something to help you through this tough time. Kim