Gallbladder Cancer - Inoperable Due to Blood Vessel Involvement

Kings Cross
Kings Cross Member Posts: 3
in Rare and Other Cancers #1

Happy New Year from England!

My wife (45) has recently been diagnosed with GBC, after going jaundiced. The U.K. Approach to treatment, is to attempt surgery, before employing chemotherapy. This seems to contradict American practice?

Her Attempted liver resection could not be carried out, as it was found that the cancer had spread to become "involved" with the portal vein and arteries near the bile duct. In the judgement of the surgeons, this made it too risky to attempt to remove it. Has anyone come across surgery in America that can tackle such situations please?

She has now been referred to an oncologist, with cisplatin and gemcitabine being prescribed to "improve symptoms"

Should these not reduce her cancer, does anyone have experience of other treatment regimes that have had the desired effect please?

Everything relating to GBC on these shores seems to be doom and gloom. I appreciate that we are in a dire situation, but the American approach seems to be more aggressive and positive. I'm hoping to gather as much information as I can. An otherwise fit 45 year old mother of a 9 year old child, deserves much more than to be given up on by our health service. 

Many thanks for whatever pointers you are able to give. 

Comments

  • Rich24uk
    Rich24uk Member Posts: 17
    #2
    Hi

    Hope you can get some further support here. Also, just to mention in the UK there is a 2nd line chemo treatment should the gemcis fail. This is FOLFOX. Generally it is not as effecive as 1st line but it is an option where patients are seen as fit enough to withstand the side effects.

  • Jbeck
    Jbeck Member Posts: 1
    #3
    Sorry to jump on your post.

    Sorry to jump on your post. My mum is in exact same situation. We had first appointmentvat Christies today. They want to hold off chemo until the cancer has grown and causing more pain and/or symptoms. at a loss and searching if thetr is anything else out there. Will let you know if I hear of anything 

     

    best wishes to you all

  • Kings Cross
    Kings Cross Member Posts: 3
    #4
    Rich24uk said:

    Hi

    Hope you can get some further support here. Also, just to mention in the UK there is a 2nd line chemo treatment should the gemcis fail. This is FOLFOX. Generally it is not as effecive as 1st line but it is an option where patients are seen as fit enough to withstand the side effects.

    Many thanks. That is what I

    Many thanks. That is what I was seeking to find out. The trouble with the medical profession, is that they won't tell you what else they will try next, if plan A fails. Understandable with the patient, who has to believe, but it would save a lot of fruitless Googling for relatives!

  • Kings Cross
    Kings Cross Member Posts: 3
    #5
    Jbeck said:

    Sorry to jump on your post.

    Sorry to jump on your post. My mum is in exact same situation. We had first appointmentvat Christies today. They want to hold off chemo until the cancer has grown and causing more pain and/or symptoms. at a loss and searching if thetr is anything else out there. Will let you know if I hear of anything 

     

    best wishes to you all

    That doesn't make sense.

    That doesn't make sense. Please go back and clarify. Has this come to you second hand?

  • CLTdoglover
    CLTdoglover Member Posts: 16
    #6
    Gallbladder Cancer Genetic Testing for HER2

    Have her do genetic testing to see if she has HER2 expression (as part of a full genetic analysis), which is common in breast cancer and recently discovered in GBC.  If she has it, they have 3 decent chemos to extend  or save her life.

    My 47 year old friend was diagnosed with Stage IV in Dec 2014 and  told she was inoperable with  4-6 months to live.  She went through Perthera to perform genetic testing (who then sends the tissue to Caris for protein pathways and Foundation for genomic profiling) which discovered the HER2 amplification in her tumors.  She went on a series of regular chemos plus the HER2 drugs which shrunk or killed all of her tumors and on 12/2/2015 Sloan Kettering surgically removed her cancer and she is now NED.  This is a breakthrough event for this terrible disease and I cannot emphasize the importance of doing genetic testing on this cancer!  Do not delay as this cancer is aggressive.  

    I cannot speak to whether Perthera is the best or not for genetic testing but that is who her oncologist recommended and it worked for her.  

  • Cllnmoore
    Cllnmoore Member Posts: 5
    #7
    GBC Stage 3b with liver involvement

    Dear Kings Cross

     

    I am 48 year old mother of 3 children ages 9,9 and 11.  I live in In the U.S.. I was diagnosed 1 year ago with stage 3b GBC found accidentally via removal of my gallbladder due to a stone.  My original ct scan Was clear.  However, standard protocol in US seems to be second surgery to remove a wedge of the liver and lypmh nodes.  My bile duct margins were clear.  There was microscopic cancer found in my liver and one lymph node Found upon biopsy after removal.  

     

    I underwent 6 months total of chemo with cisplatin and Gemzar and 6 weeks of radiation along with oral capecitabine.  I have had two clear PET scans (One during and one post treatment).  I am currently cancer free in remission.  I feel amazing.  God has blessed me.

     

    i am writing you to tell you to keep fighting for your wife.  There is plenty of hope with this disease.  Find that doctor who will fight with you.  My doctors told me because of my young age and otherwise good health status I could be cured.  Your wife can be too.

     

    if you choose to seek treatment in the U.S. Here is where I got consults They concurred with the treatment plan of my local oncologist and u was treated locally.  Abramson Cancer Center at University of Pennsylvania GI cancer department.  They are amazing.  My second liver surgery was done by a biliary surgeon at Thomas Jefferson University Hospital in Philadelphia.  This surgeon really knew his stuff and I believe saved my life.  Please feel free to contact me directly if you want the names of these doctors.  Cllnmoore@yahoo.com

     

    God bless you, your wife and child.

  • Kefranks
    Kefranks Member Posts: 1
    #8
    CLTdoglover said:

    Gallbladder Cancer Genetic Testing for HER2

    Have her do genetic testing to see if she has HER2 expression (as part of a full genetic analysis), which is common in breast cancer and recently discovered in GBC.  If she has it, they have 3 decent chemos to extend  or save her life.

    My 47 year old friend was diagnosed with Stage IV in Dec 2014 and  told she was inoperable with  4-6 months to live.  She went through Perthera to perform genetic testing (who then sends the tissue to Caris for protein pathways and Foundation for genomic profiling) which discovered the HER2 amplification in her tumors.  She went on a series of regular chemos plus the HER2 drugs which shrunk or killed all of her tumors and on 12/2/2015 Sloan Kettering surgically removed her cancer and she is now NED.  This is a breakthrough event for this terrible disease and I cannot emphasize the importance of doing genetic testing on this cancer!  Do not delay as this cancer is aggressive.  

    I cannot speak to whether Perthera is the best or not for genetic testing but that is who her oncologist recommended and it worked for her.  

    Inoperable gallbladder cancer

    i read your post regarding genetic testing with interest. My husband underwent chemo with cisplatin and gemcitabine which didn't shrink his tumor. It has not metasticized, but he has a bit in his common bile duct. He is about to finish 28 radiation treatments afterwhich he'll get a scan to see if the GB tumor has shrunken away from blood vessels to make surgeons comfortable with resection surgery. Radiologist said it is unlikely tumor will shrink to allow surgery. Is HER2 only found in women? Or should we ask for genetic testing of my husband's tumor?

  • jca2cali
    jca2cali Member Posts: 4
    edited May 2016 #9
    Genetic Testing

    Can genetic testing be done simultaneously with chemo?  My mom just had her first round of chemo but if there's something else she can be doing to improve her chances I would love to explore. Thanks!

    Denise

  • CLTdoglover
    CLTdoglover Member Posts: 16
    edited August 2016 #10
    Kefranks said:

    Inoperable gallbladder cancer

    i read your post regarding genetic testing with interest. My husband underwent chemo with cisplatin and gemcitabine which didn't shrink his tumor. It has not metasticized, but he has a bit in his common bile duct. He is about to finish 28 radiation treatments afterwhich he'll get a scan to see if the GB tumor has shrunken away from blood vessels to make surgeons comfortable with resection surgery. Radiologist said it is unlikely tumor will shrink to allow surgery. Is HER2 only found in women? Or should we ask for genetic testing of my husband's tumor?

    HER2 is not just in women.

    HER2 is not just in women.  He should do the testing. 

     

  • CLTdoglover
    CLTdoglover Member Posts: 16
    #11
    jca2cali said:

    Genetic Testing

    Can genetic testing be done simultaneously with chemo?  My mom just had her first round of chemo but if there's something else she can be doing to improve her chances I would love to explore. Thanks!

    Denise

    Yes, it can be done while on

    Yes, it can be done while on chemo.  BUt they need enough tissues (6 core biopsies, I believe) which requires a laparascopy.  

  • Angiemeco
    Angiemeco Member Posts: 1
    #12

    Hello everyone!

    How did it go for your wife?Wishing you all the best.

    I was recently diagnosed with gbc.lymph node involvement and spread to peritoneum.I am 41 year old female.I had surgery again after the galll bladder was removed and that's when they discovered the further spread.

    My oncologist recommends chemotherapy as soon as I heal in a month's time.

    It is scary as I know of no one who has had this cancer.I must say I had breast cancer earlier this year lumpedectomy plus radiation and 10 years tamoxifen.

     

    I would really love to hear how everyone is doing.

  • stella359
    stella359 Member Posts: 4
    #13
    CLTdoglover said:

    Yes, it can be done while on

    Yes, it can be done while on chemo.  BUt they need enough tissues (6 core biopsies, I believe) which requires a laparascopy.  

    my dad is severely thin and

    my dad is severely thin and weak, not a candidate for surgery due to portal vein clotted. will radiation work? will chemo make him worse if he's fraile? how can I get gene mutation testing? all our docs are horrible.

  • candicea
    candicea Member Posts: 5
    #14
    stage 4 gallbladder cancer

    hi my name is candice, my mom brandy 43 a mother of 7 we are all in are 20s and she has a 1 and 3 year old she was recently diagnosed with stage 4 gallbladder cancer this past 2016 Christmas. Probably the worst Christmas of are lives, but still happy where able to have are mother here. She was put on chemo witch seemed to be working but her lasted MRI results indicated that she had 11 new tumors on her liver and surgery wasn't a option. This is very hard on us but mostly for are little brother and sister they don't understand why my mom is in and out of the hospital this is devastating to all of us. The doctors are not giving us much hope. She is at kaisaer right now me and my siblings where able to get her better insurance so she can seek the best medical help we just don't know where to start if anyone can be help that would be wonderful thank you!

  • MichelleNathalia
    MichelleNathalia Member Posts: 1
    edited July 2017 #15
    candicea said:

    stage 4 gallbladder cancer

    hi my name is candice, my mom brandy 43 a mother of 7 we are all in are 20s and she has a 1 and 3 year old she was recently diagnosed with stage 4 gallbladder cancer this past 2016 Christmas. Probably the worst Christmas of are lives, but still happy where able to have are mother here. She was put on chemo witch seemed to be working but her lasted MRI results indicated that she had 11 new tumors on her liver and surgery wasn't a option. This is very hard on us but mostly for are little brother and sister they don't understand why my mom is in and out of the hospital this is devastating to all of us. The doctors are not giving us much hope. She is at kaisaer right now me and my siblings where able to get her better insurance so she can seek the best medical help we just don't know where to start if anyone can be help that would be wonderful thank you!

    Hi my mother was recently

    Hi my mother was recently diagnosed with appendix cancer, she is 66, we have her at cancer treatment center of america in zion IL, we have found them to be amazing!

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