gyn oncologist in California Uterine Carcinosarcoma (MMMT)

DanielOC
DanielOC Member Posts: 5
in Uterine/Endometrial Cancer #1

Hello Everyone

I'm so glad this forum exist, there's so little information about Carcinosarcoma

My lovely wife who is 40 years old was just diagnose with Carcinosarcoma, last week she was bleeding and went to ER and they discovered a big tumor in the Cervical area they did a D&C, they told us first it was a cervical cancer but after the pathology report they confirmed today is Carcinosarcoma, a CT showed some small nodules in both lungs and increased number of nonenlarged lymph nodes. We didn't do a biopsy yet on the lung or lymph nodes, but the oncologist suspects is stage IV.

We had our first visit today with an Oncologist who specialize in Radiotherapy and she suggested we should start ASAP and was ordering another CT and also a PET, we'll have next week an appointment with another oncologist who specializes in chemo and in 2 weeks we have an appointment with a Gyn-Oncologist (UCI doctor I hope he'll have experience with this type of cancer).

This cancer is so rare I'm not very confident in the oncologist that suggested Radiotherapy ASAP with another CT and PET, reading in the forums and some studies on the internet, makes me think debulking surgery first and chemo/Radiotherapy second is the best option and getting too much radiation is not good for this type of cancer.

Anyone knows a good gyn-oncologist in Southern California who is familiar with this rare cancer? Thank you

Comments

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,515 Member
    edited November 2020 #2
    Daniel, first, this board is

    Daniel, first, this board is for the families of warriors as much as the warriors themselves.  None of us could make it through the journey without the love and support of those close to us, so please visit often and let us know how your wife is doing, or encourage her to come and visit herself.  It is a great group of people here who are supportive and incredibly brilliant.

    Below is a link to a search for gynecologic oncologists around the country, however, maybe one of the women lives out that way and can suggest a wonder gyn onc.  As you clearly know, this is who should be guiding treatment and performing any surgey.  

    https://specialist.foundationforwomenscancer.org/

  • Tamlen
    Tamlen Member Posts: 343 Member
    edited November 2020 #3
    NCCN Guidelines

    Daniel, sorry to hear your wife and you are facing this. I'm glad you found us...this is a very helpful forum and I've found it incredibly supportive and informative it since I was diagnosed 3 years ago with Stage IVB endometrioid adenocarcinoma. I had lesions in my lungs by the time of diagnosis, too, and today they're good and dead (for me, chemo killed them).

    The NCCN Guidelines outline the standard of care for the various types of uterine cancer. I highly recommend you go to the link I provided and go through the guidelines in detail--there's a lot of information in there that should help you know what you need to ask the various doctors. In some cases radiation may be done first, though it's much more common for surgery first for many of the uterine cancers. Someone who has carcinosarcoma may be more helpful to you on that front.

    Either way, I think you'll see that a lot of us will agree with your inclination to seek out a gyn onc before making decisions. I think that for most of us, our gyn onc is our lead oncologist and acts as the "hub" for our care.

    Good luck, keep us posted, and don't hesitate to ask as many questions as you need to. The whirlwind of initial diagnosis feels overwhelming and we can help.

    Tamlen

  • pato58
    pato58 Member Posts: 120 Member
    edited November 2020 #4
    Dear Daniel

    https://sarcomaoncology.com/cancer-doctors/

    310-552-9999

    SARCOMA ONCOLOGY CENTER

    2811 Wilshire Blvd #414,Santa Monica, CA, 90403

    They seem to treat gynecological sarcomas. 

    I found this info through Google search. I hope it helps

  • cmb
    cmb Member Posts: 1,001 Member
    edited November 2020 #5
    2nd Opinion

    While I have MMMT cancer, I was treated in the MIdwest and don't know of any specific practitioners In California. However, you can contact the GCS Project for a second opinion by Dr. Michael Birrer, a specialist in this type of cancer.

    https://gcsproject.org/resources/video-consultations/

    Also, you may want to ask this question on the Facebook page that is dedicated to MMMT. I'm not on Facebook, but this site is still active (although a previous MMMT Yahoo group was recently disbanded when Yahoo discontinued support for those types of groups.

    https://www.facebook.com/groups/carcinosarcoma/

    If you click on my user name you can read about the chemo treatment I had, which was different than the typical six cycles of Paclitaxel/Carboplatin that most other MMMT patients have received in recent years. I can't say whether this combination of drugs was more effective than the Paclitaxel/Carboplatin alone would have been. But I am still NED at the moment – four years after diagnosis. Also my medical oncologist was not a MMMT specialist. But he definitely "thought outside the box" when it can to devising a chemo plan.

  • DanielOC
    DanielOC Member Posts: 5
    edited November 2020 #6
    NoTimeForCancer said:

    Daniel, first, this board is

    Daniel, first, this board is for the families of warriors as much as the warriors themselves.  None of us could make it through the journey without the love and support of those close to us, so please visit often and let us know how your wife is doing, or encourage her to come and visit herself.  It is a great group of people here who are supportive and incredibly brilliant.

    Below is a link to a search for gynecologic oncologists around the country, however, maybe one of the women lives out that way and can suggest a wonder gyn onc.  As you clearly know, this is who should be guiding treatment and performing any surgey.  

    https://specialist.foundationforwomenscancer.org/

    Thank you, I'll try my best

    Thank you, I'll try my best to support my wife, and I'll visit often here for more information and I'll update how she is doing. I told her to join and probably will join.

    Thank you for the link I'll check it out

  • DanielOC
    DanielOC Member Posts: 5
    edited November 2020 #7
    Tamlen said:

    NCCN Guidelines

    Daniel, sorry to hear your wife and you are facing this. I'm glad you found us...this is a very helpful forum and I've found it incredibly supportive and informative it since I was diagnosed 3 years ago with Stage IVB endometrioid adenocarcinoma. I had lesions in my lungs by the time of diagnosis, too, and today they're good and dead (for me, chemo killed them).

    The NCCN Guidelines outline the standard of care for the various types of uterine cancer. I highly recommend you go to the link I provided and go through the guidelines in detail--there's a lot of information in there that should help you know what you need to ask the various doctors. In some cases radiation may be done first, though it's much more common for surgery first for many of the uterine cancers. Someone who has carcinosarcoma may be more helpful to you on that front.

    Either way, I think you'll see that a lot of us will agree with your inclination to seek out a gyn onc before making decisions. I think that for most of us, our gyn onc is our lead oncologist and acts as the "hub" for our care.

    Good luck, keep us posted, and don't hesitate to ask as many questions as you need to. The whirlwind of initial diagnosis feels overwhelming and we can help.

    Tamlen

    Thank you for your reply,

    Thank you for your reply, your story gives us hope and courage and thank you again for all the information

  • DanielOC
    DanielOC Member Posts: 5
    edited November 2020 #8
    pato58 said:

    Dear Daniel

    https://sarcomaoncology.com/cancer-doctors/

    310-552-9999

    SARCOMA ONCOLOGY CENTER

    2811 Wilshire Blvd #414,Santa Monica, CA, 90403

    They seem to treat gynecological sarcomas. 

    I found this info through Google search. I hope it helps

    Thank you I'll take a look

    Thank you I'll take a look

  • DanielOC
    DanielOC Member Posts: 5
    edited November 2020 #9
    cmb said:

    2nd Opinion

    While I have MMMT cancer, I was treated in the MIdwest and don't know of any specific practitioners In California. However, you can contact the GCS Project for a second opinion by Dr. Michael Birrer, a specialist in this type of cancer.

    https://gcsproject.org/resources/video-consultations/

    Also, you may want to ask this question on the Facebook page that is dedicated to MMMT. I'm not on Facebook, but this site is still active (although a previous MMMT Yahoo group was recently disbanded when Yahoo discontinued support for those types of groups.

    https://www.facebook.com/groups/carcinosarcoma/

    If you click on my user name you can read about the chemo treatment I had, which was different than the typical six cycles of Paclitaxel/Carboplatin that most other MMMT patients have received in recent years. I can't say whether this combination of drugs was more effective than the Paclitaxel/Carboplatin alone would have been. But I am still NED at the moment – four years after diagnosis. Also my medical oncologist was not a MMMT specialist. But he definitely "thought outside the box" when it can to devising a chemo plan.

    Thank you for the information

    Thank you for the information, I joined the facebook group. Stories like yours encourage us and give us hope. I really hope and pray that my wife gets cured like many of you. Thank you for replying

  • Virgil90012
    Virgil90012 Member Posts: 35 Member
    edited November 2020 #10
    Second Opinion at the City of Hope

    From your reference to UCI, I am assuming that you live near Orange County (Irvine).  I don't know much about your wife's type of cancer but you may want to get a second opinion at the City of Hope.  I know that City of Hope opened a new center in Orange County and they are a well renowned NCI-designated Cancer Comprehensive Center.  My doctors are with City of Hope and I really trust them.  Good luck on this journey and remember to take one step at a time.  

  • Fayard
    Fayard Member Posts: 438 Member
    edited December 2020 #11
    Hi Daniel,

    Hi Daniel,

     

    I am sorry I am just seeing your message. I am also sorry to hear about your wife’s diagnosis. You have come to a place where you can count on support and a lot of valuable information/advice. I was diagnosed in 2010 with Clear Cell Adenocarcinoma stage 2, grade 3. Fortunately, and thanks to GOD, I have been ned for 10 years now. I had a great doctor, who is both, gyno and oncologist. I still see him once a year. Here is the contact information. I see Dr. Bahador. Best wishes! 

    South Coast Gynecologic Oncology, Inc.

    858-455-5524

    3390 Carmel Mountain Rd

    Suite130

    San Diego, CA 92121

     

  • lolow
    lolow Member Posts: 12
    edited December 2020 #12
    MMMT Diagnosis Stage 3B in SoCal

    Hi Daniel,

      I'm sorry for your wife's diagnosis. I'm in SoCal, too. Found out about my MMMT in March of 2020. I was treated at Scripps in Rancho Bernardo by Dr. Sonia Ali. My surgeon was Dr. Janco (I really liked her!). My doctors' are all very young. I'm 57. My treatment was the total hysterectomy then the 6 rounds of chemo; one every three weeks. As far as I know, I'm still cancer-free. Covid hit my household recently and I didn't get it! I feel good. My hair's growing back. 

      On my 5th round of chemo, I had to have two blood transfusions. It really helped as I was getting pretty weak. Note: this is my second cancer. Shoot, might have been brought on from the radiation used to treat my first HPV anal cancer 6 years ago! I was able to work from home this time the entire treatment.

     Take care. You'll both be in my thoughts and prayers. Warm Regards, Linda

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