Surgical Recommendations for Advanced Gallbladder (GBC) Stage IV

CLTdoglover
CLTdoglover Member Posts: 16
edited September 2015 in Rare and Other Cancers #1
Hi, everyone.  I am helping to find a surgeon for a dear friend diagnosed with Stage IV GBC (Gallbladder cancer) in November, 2014. She did well on Gemzar/Cisplatin but when it quit working, opted for genetic testing through Perthera (using Caris and FoundationOne labs) to see if she had HER2 expression, which has recently been found in GBC. She did have 30% expression and, so, was put on Herceptin along with some other chemos. She has also had radioembolization of the liver tumors. So now, 10 months later in September 2015, her liver tumors are NED, tumor marker is down from 700+ to 70, liver function is normal, and no sign of distant metastasis. We are now trying to find an experienced surgeon to consider radical removal of gallbladder, liver resection, and seepage into peritoneum. 
This brings me to why I started this thread.  As you know, GBC is rare and the surgery is complicated so few surgeons have attempted it given the aggressive nature of the cancer, the opportunity for seepage, and the likelihood of distant metastasis.  So, if going to attempt it, you need an EXPERIENCED surgeon and they are not easy to find for advanced GBC.  I have gone through all other GBC threads to find who might be the best in country.  Here is what I have found so far:

  1. Howard Reber at UCLA has done a number of Stage IV GBC successfully with long term survival.  (Reference Lily50 on  ACN.) 
  2. Dr. David Mahvi, North Western, Chicago (baughlm on ACN)
  3. Johns Hopkins.  (LucyDoodle on ACN but no specfic surgeon indicated)
  4. Dr. Kowalski and my Oncologist is Dr. Rodrigues at the Florida Cancer Center in Ft. Myers.  (DraginLady on ACN)

Please let me know if anyone else has a recommendation for an experienced GBC surgeon. 

We are located in Charlotte, NC but willing to travel if necessary.  Obviously, local is easiest or NYC due to some housing connections but willing to look into any location. 

Comments

  • haugy
    haugy Member Posts: 11
    #2
    surgical recommendations

    Hi,

    I was diagnosed june of 2010, gall bladder cancer  stage T3N1M0  (stage 3b)

    I had my surgery at  Mayo Clinic  Rochester Minnesota  by Dr David Nagorney

  • CLTdoglover
    CLTdoglover Member Posts: 16
    #3
    haugy said:

    surgical recommendations

    Hi,

    I was diagnosed june of 2010, gall bladder cancer  stage T3N1M0  (stage 3b)

    I had my surgery at  Mayo Clinic  Rochester Minnesota  by Dr David Nagorney

    Thank you.  We will research.

    Thank you.  We will research.

  • LucyDoodle
    LucyDoodle Member Posts: 23
    #4
    CLTdoglover said:

    Thank you.  We will research.

    Thank you.  We will research.

    I haven't been on the board

    I haven't been on the board for ages. The surgeon at Johns Hopkins was Dr Pawlik - a great surgeon!

    Unfortunately Steve's cancer has reoccurred so we are back to chemo as well as getting a biopsy for testing. 

    Steve's prognosis when first diagnosed was less than a year - he is still here and fighting  4 and a half years later thanks to the amazing care at JH

     

  • CLTdoglover
    CLTdoglover Member Posts: 16
    #5
    LucyDoodle said:

    I haven't been on the board

    I haven't been on the board for ages. The surgeon at Johns Hopkins was Dr Pawlik - a great surgeon!

    Unfortunately Steve's cancer has reoccurred so we are back to chemo as well as getting a biopsy for testing. 

    Steve's prognosis when first diagnosed was less than a year - he is still here and fighting  4 and a half years later thanks to the amazing care at JH

     

    Steve

    Thank you for the information.  I am so sorry to hear the cancer is back but it is impressive that he's still fighting after 4 1/2.  Michelle just heard from Dr. Jarnigan at Sloan Kettering that he is willing to do her surgery.  We never thought we'd see this day.  We were told a year ago this wouldn't be an option so we are elated with this news.  I will keep Dr. Pawlik's information in case she wants a second opinion. 

    All the best in fighting this horrible disease a second time.  If Steve has not done genetic testing, I would highy recommend it.  It he has HER2 amplification, they have 3 very good drugs without crazy side effects.  That is what saved Michelle's life. 

    She had hers done through Perthera.  It took 3-4 to get the results. 

     

  • Cllnmoore
    Cllnmoore Member Posts: 5
    #6
    Liver surgeon

    my liver surgery was done by Ernest Rosato at Thomas Jefferson University Hospital.  He is a biliary surgeon and he is amazing.  I believe he saved my life.  I am 48 and diagnosed with Stage 3b GBC one year ago after GB removal due to a gallstone.  I am currently in remission and feel fantastic.  I hope this helps and I wish you luck.

     

    God bless.

Discussion Boards