Gallbladder Cancer Diagnosis

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  • gbcinwa
    gbcinwa Member Posts: 3
    edited July 2018 #22
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    LeoLady said:

    Hi gbcinwa -

    Hi gbcinwa -

    Gosh I am so sorry to hear about your diagnosis and yes it does sound like we are on similar paths.  I can certainly understand your reasoning in going the route of the chemo and I am open to hearing what my doctors have to say about it as far as options, types, etc.  I say now I'd prefer the observation but that could change.  I am also intrigued by the bilcap study you mention and will look it up - I've never heard of it.  Again this is all a huge learning experience.  

    I am curious about how you are feeling after the surgery?  Mine was June 12th and I still have quite a bit of discomfort but am managing.  I worked from home last week and went into work today for a partial day.  I understand it is 3-6 weeks after surgery for resuming normal activities.  Also do you mind me asking where you are and where you had your surgery?  You can message me if you want and/or if you are not comfortable in sharing that I totally understand.  

    I agree with knowing you've done everything possible as I feel that way too.  

    All the best to you with your recovery.

       

    Hi There,

    Hi There,

    I did send you a message with some information. I agree that this is a huge learning curve. I am recovering well and am out and about walking like crazy. I'm still on exercise restrictions for things like yoga or weights. I'm off all pain meds, but having incision and related area discomfort. I find that clothes rubbing on the incision creates a sensitivity. I was told 4-8 week recovery time for returning to work. How is your energy?? Mine is really hit and miss.

     

  • KCFlash
    KCFlash Member Posts: 23
    #23
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    Leo Lady and gbcinwa -

    Leo Lady and gbcinwa - Congratulations to both of you!! That is exciting and encouraging news.   i am still in the process of the neo adjuvant chemo therapy before new scans and testing to determine surgery for the resection.   I will be interested to hear how you both recover after the surgery.    If I am lucky the re-evaluation will be the last week of August.    I have 2 rounds left of the cisplatin and gemzar and that chemo has been a bear.   2 weeks on and one week off.    I am so excited to hear of your good news and it gives me hope.    gbcinwa - my oncologist mentioned something about more chemo after surgery I am hoping it's the oral chemo you are discussing.     I have a friend that had breast cancer and she's on the oral chemo (not sure if it's the same thing) but she does very well and it does not make her sick at all.    Keep posting your progress and congratulations to all!

     

  • LeoLady
    LeoLady Member Posts: 29
    #24
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    gbcinwa said:

    Hi There,

    Hi There,

    I did send you a message with some information. I agree that this is a huge learning curve. I am recovering well and am out and about walking like crazy. I'm still on exercise restrictions for things like yoga or weights. I'm off all pain meds, but having incision and related area discomfort. I find that clothes rubbing on the incision creates a sensitivity. I was told 4-8 week recovery time for returning to work. How is your energy?? Mine is really hit and miss.

     

    Yes my energy waxes and wanes

    Yes my energy waxes and wanes - usually in the AM it's better and by the end of the day it fades.  Still much soreness and stiffness around the incision (not taking anything for pain though) - am told 3-6 weeks post-op until 'normal' activities can be resumed'.

  • LeoLady
    LeoLady Member Posts: 29
    #25
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    KCFlash said:

    Leo Lady and gbcinwa -

    Leo Lady and gbcinwa - Congratulations to both of you!! That is exciting and encouraging news.   i am still in the process of the neo adjuvant chemo therapy before new scans and testing to determine surgery for the resection.   I will be interested to hear how you both recover after the surgery.    If I am lucky the re-evaluation will be the last week of August.    I have 2 rounds left of the cisplatin and gemzar and that chemo has been a bear.   2 weeks on and one week off.    I am so excited to hear of your good news and it gives me hope.    gbcinwa - my oncologist mentioned something about more chemo after surgery I am hoping it's the oral chemo you are discussing.     I have a friend that had breast cancer and she's on the oral chemo (not sure if it's the same thing) but she does very well and it does not make her sick at all.    Keep posting your progress and congratulations to all!

     

    Thank you KC Flash!  I will

    Thank you KC Flash!  I will update everyone after post-op doc visits..

    P.S. Yay - we're ALL going to make it!Smile

  • gbcinwa
    gbcinwa Member Posts: 3
    edited July 2018 #26
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    Thank You KCFlash and LL

    KC, I wish you all the best and will continue to monitor this board for your progress. Wishing you the very best! I meet with the onco. dr this next Thurs. to start chemo. I will update then.

    All The Best,

     

    Kendall

  • KCFlash
    KCFlash Member Posts: 23
    #27
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    Leo Lady and gbcinwa - Just

    Leo Lady and gbcinwa - Just checking in to see how the two of you are doing since your surgeies? - I finally have an appointment on August 28th to review scans and discuss surgery or more chemo.    One more round left August 5th and 13th.    If you're doing chemo what kind of chemo are you doing after surgery and what is the plan? 

  • LeoLady
    LeoLady Member Posts: 29
    #28
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    KCFlash said:

    Leo Lady and gbcinwa - Just

    Leo Lady and gbcinwa - Just checking in to see how the two of you are doing since your surgeies? - I finally have an appointment on August 28th to review scans and discuss surgery or more chemo.    One more round left August 5th and 13th.    If you're doing chemo what kind of chemo are you doing after surgery and what is the plan? 

    Hi KCFlash -

    Hi KCFlash -

    Thanks so much for checking in.  I am doing well overall post-surgery.  

    I do get tired easily and can't do quite as much as I'd like to (still have lifting restrictions) but for the most part I am back to my regular daily routine.  My body lets me know when it's time to rest and I still have some pain at the incision site but I notice it is usually when I have been overdoing it.  I see the oncologist on 8/8 and although I am still pretty adamant about not doing any chemo, I vowed to keep an open mind and listen to what he has to say.  I just wish there was more data on gbc as far as success rate with treatments but I am starting to think that we ARE the data... 

    I am so, so glad to hear that you are almost done with your chemo treatments and I look forward to hearing about your appointment on the 28th and also hope your scans are clean - fingers crossed. It sounds like you are in very good hands at Mayo and if you do need the surgery and have any questions if I can answer them I'm glad to help.  I really wish you the best now and on the 28th.

    I will post an update on my situation after the 8th.

    Take care.  

  • annie4145
    annie4145 Member Posts: 218 Member
    #29
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    Glenn, Yes, it is troubling

    Glenn, Yes, it is troubling how some doctors don't want you questioning anything.  My first oncologist didn't like being questioned, and was arrogant, and patronizing.  I am an educated professional.  No, I am not a doctor, but I expect someone to be able to give me the facts about the proposed treatment, accurate information about the side effects, and the expected prognosis.  It is our lives that we are dealing with, and we should be able to expect top notch care and more than "this is our protocol."  So in the end, I am now going to UCSF. 

  • nweibel
    nweibel Member Posts: 2
    edited August 2018 #30
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    Need opinions

    i am a breast cancer survivor, but know nothing about gallbladder cancer so I am seeking advice.  I have cirrhosis from Hep C so I get routine ultrasounds to check for liver cancer.  My previous one was a year ago.  I just had one a few weeks ago and it shows a 13 mm gallbladder polyp.  A year ago the polyp was 8 mm. Everything that I have read shows that the gallbladder needs to be removed when larger than 10 mm/1 cm.  My gastro doctor does not want me to do that because he is afraid that the anesthesia will cause my liver to decompensate.  He wants me to wait and have another ultrasound in 6 months.  I am really uncomfortable with waiting that long since it grew 5 mm in a year.  We compromised and will do another scan in 3 mos.  I have no symptoms and my labs are stable.  Any advice from people who have been there/done that?  Thank you so much for anything that you can offer me. I am not asking for medical advice, just what your experiences were and how you discovered your malignancy.  Would you do anything different? Nancy

  • LeoLady
    LeoLady Member Posts: 29
    #31
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    nweibel said:

    Need opinions

    i am a breast cancer survivor, but know nothing about gallbladder cancer so I am seeking advice.  I have cirrhosis from Hep C so I get routine ultrasounds to check for liver cancer.  My previous one was a year ago.  I just had one a few weeks ago and it shows a 13 mm gallbladder polyp.  A year ago the polyp was 8 mm. Everything that I have read shows that the gallbladder needs to be removed when larger than 10 mm/1 cm.  My gastro doctor does not want me to do that because he is afraid that the anesthesia will cause my liver to decompensate.  He wants me to wait and have another ultrasound in 6 months.  I am really uncomfortable with waiting that long since it grew 5 mm in a year.  We compromised and will do another scan in 3 mos.  I have no symptoms and my labs are stable.  Any advice from people who have been there/done that?  Thank you so much for anything that you can offer me. I am not asking for medical advice, just what your experiences were and how you discovered your malignancy.  Would you do anything different? Nancy

    Hi nweibel -

    Hi nweibel -

    In my experience so far, trusting my intuition and being persistent is what eventually led to my diagnosis, and ironically it was not the gallbladder area that was bothering me (which still remains a mystery, incidentally).  I had no classic symptoms of any kind of gallbladder disease whatsoever. 

    Do you think your physician would consider ordering a CT scan or other form of imaging in addition to the ultrasound?  The reason I ask is because I had both an ultrasound and a CT scan done in that order (at the same facility) and although the ultrasound showed a 'lesion' as it was called, it was actually the CT scan that showed a more detailed image and description of the lesion, and suggested considering adenocarcinoma of the gallbladder.  This is what really what got things moving along for me, and thankfully so.  

    I hope that helps...good luck.

     

  • nweibel
    nweibel Member Posts: 2
    edited August 2018 #32
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    LeoLady said:

    Hi nweibel -

    Hi nweibel -

    In my experience so far, trusting my intuition and being persistent is what eventually led to my diagnosis, and ironically it was not the gallbladder area that was bothering me (which still remains a mystery, incidentally).  I had no classic symptoms of any kind of gallbladder disease whatsoever. 

    Do you think your physician would consider ordering a CT scan or other form of imaging in addition to the ultrasound?  The reason I ask is because I had both an ultrasound and a CT scan done in that order (at the same facility) and although the ultrasound showed a 'lesion' as it was called, it was actually the CT scan that showed a more detailed image and description of the lesion, and suggested considering adenocarcinoma of the gallbladder.  This is what really what got things moving along for me, and thankfully so.  

    I hope that helps...good luck.

     

    Thanks LeoLady.  I usually

    Thanks LeoLady.  I usually trust my intuitions and am not sure why my doctor doesn’t jut take out my gallbladder and be done with this.  I would rather deal with the liver issues than gallbladder cancer.  He is a gastro doctor so this is his field.  I think that I will talk to my primary care doctor.  I read the CT scans weren’t as good as ultrasounds, but that wasn’t the case for you.  Pet scans are the best but they are costly.  Thank you so much for your insight.  I wish you the best.

  • LeoLady
    LeoLady Member Posts: 29
    edited August 2018 #33
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    nweibel said:

    Thanks LeoLady.  I usually

    Thanks LeoLady.  I usually trust my intuitions and am not sure why my doctor doesn’t jut take out my gallbladder and be done with this.  I would rather deal with the liver issues than gallbladder cancer.  He is a gastro doctor so this is his field.  I think that I will talk to my primary care doctor.  I read the CT scans weren’t as good as ultrasounds, but that wasn’t the case for you.  Pet scans are the best but they are costly.  Thank you so much for your insight.  I wish you the best.

    Well again - good luck and

    Well again - good luck and hope it turns out to just be a polyp.    

  • KCFlash
    KCFlash Member Posts: 23
    #34
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    HI nweibel

    I agree with Leo Lady.   Go with your instinct.    I had a few minor probplems and I was told I could live with gallstones or have surgery.   I opted for surgery and mentioned that my mom passed away with Gallbladder cancer.   They had told me not to worry about it, but decided to go ahead anywhay.  My stones were found on the CT, but not any cancer.  The cancer was only fpund after the gallbladder removal during pathaology. I can only speak to my experience, while this has been a tough road for me so far.   I do not regret catching it early as there is still  a chance for a cure and I will have scans and evaluation within the next 2 weeks.   You can also get a second opinion those are always available.     

  • LeoLady
    LeoLady Member Posts: 29
    #35
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    And now confusion...

    After seeing the oncologist this past week I am now faced with the decision of whether to observe and just do continued monitoring/testing or to have chemo just in case there are any microscopic malignant cells that were left undetected.  The treatment that is being recommended is 8 cycles of cisplatin and gemzar with 2 weeks on and 1 week off, beginning the week after next.  

    I originally was very adamant on not receiving chemo specifically because there is no real data claiming it is beneficial in this scenario, and I feel that the potential side effects of the chemo for a 'maybe' are not worth it, however now I am a bit perplexed.  After talking to the oncologist, family and friends who feel that if the chemo offers even a maybe teeny tiny chance of no recurrence then maybe I should do it. 

    I just don't know if chemo is the answer for me right now.  And although I am much better, I am still somewhat recovering from the resection surgery.  It would be different if there were malignant tumors or if there were concrete data to support doing the treatment.    

    This post is pretty much thinking out loud because I do need to sit with this for a bit and also talk to more people.  I wish there were more long term survivors that could offer some advice and most of all I wish there were guarantees.Undecided  While I believe in honoring personal intuition and realize everybody's path is different and what's right for one may not be for another, sometimes one thing that somebody says could be a lightbulb moment.    

    Am considering a second opinion and writing down questions, also pros and cons of chemo vs. no chemo.

     

  • LeoLady
    LeoLady Member Posts: 29
    #36
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    KCFlash said:

    HI nweibel

    I agree with Leo Lady.   Go with your instinct.    I had a few minor probplems and I was told I could live with gallstones or have surgery.   I opted for surgery and mentioned that my mom passed away with Gallbladder cancer.   They had told me not to worry about it, but decided to go ahead anywhay.  My stones were found on the CT, but not any cancer.  The cancer was only fpund after the gallbladder removal during pathaology. I can only speak to my experience, while this has been a tough road for me so far.   I do not regret catching it early as there is still  a chance for a cure and I will have scans and evaluation within the next 2 weeks.   You can also get a second opinion those are always available.     

    KC Flash - wishing you the

    KC Flash - wishing you the best with your upcoming scans and tests and am so glad you are done with your chemo treatment.  I just posted an update and see that you were taking the same 'cocktail' that is being recommended for me.  How did you do with that overall if you don't mind me asking?    

  • KCFlash
    KCFlash Member Posts: 23
    #37
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    LeoLady said:

    KC Flash - wishing you the

    KC Flash - wishing you the best with your upcoming scans and tests and am so glad you are done with your chemo treatment.  I just posted an update and see that you were taking the same 'cocktail' that is being recommended for me.  How did you do with that overall if you don't mind me asking?    

    Hello Leo Lady

    Chemo for me has bwen anything but easy, but I do have to also say that I have had several side shows (C-Diff Infection, Stents) and I just got out of the hospital after a six day stay for a blood infection.   I have heard some have found it not to be too bad.   I didn't lose my hair :-)  That is a positive.    I think whether you do chemo or not is a personal decision.   On a personal note I would do the chemo, but that is just me.   

  • LeoLady
    LeoLady Member Posts: 29
    #38
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    KCFlash said:

    Hello Leo Lady

    Chemo for me has bwen anything but easy, but I do have to also say that I have had several side shows (C-Diff Infection, Stents) and I just got out of the hospital after a six day stay for a blood infection.   I have heard some have found it not to be too bad.   I didn't lose my hair :-)  That is a positive.    I think whether you do chemo or not is a personal decision.   On a personal note I would do the chemo, but that is just me.   

    Thanks KC.  It is a big and

    Thanks KC.  It is a big and personal decision.  All the best to you. :)

  • KCFlash
    KCFlash Member Posts: 23
    #39
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    Hey Leolady - How are you recovering after your surgery? Has it been a month?   What have been your biggest challenges

     

  • LeoLady
    LeoLady Member Posts: 29
    #40
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    KCFlash said:

    Hey Leolady - How are you recovering after your surgery? Has it been a month?   What have been your biggest challenges

     

    Thanks for asking - it was 2

    Thanks for asking - it was 2 months ago.  

    I still have some mild pain and discomfort in the general area of where the incision is and below where there was a drainage port, however I notice it more when I have been overdoing it physically.  I had weight lifting restrictions for the whole 2 months and I would say that was the biggest challenge and still is.  In the beginning I actually weighed items to make sure I wasn't lifting over 10lbs.  

    It was uncomfortable sleeping at first too as I could only lay in certain positions.  And clothing - nothing binding or tight around the waist or torso - even now I prefer loose clothing.  Other than all that which I would say is pretty standard, I had no major problems.    

    One thing I did the in the weeks prior to the surgery especially the week before was to eat well and get my body as physically strong as possible and I think that helped alot.  I was up and walking the day after.  

    You are getting this surgery now?   

  • LiliTM
    LiliTM Member Posts: 32
    #41
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    LeoLady said:

    Thanks for asking - it was 2

    Thanks for asking - it was 2 months ago.  

    I still have some mild pain and discomfort in the general area of where the incision is and below where there was a drainage port, however I notice it more when I have been overdoing it physically.  I had weight lifting restrictions for the whole 2 months and I would say that was the biggest challenge and still is.  In the beginning I actually weighed items to make sure I wasn't lifting over 10lbs.  

    It was uncomfortable sleeping at first too as I could only lay in certain positions.  And clothing - nothing binding or tight around the waist or torso - even now I prefer loose clothing.  Other than all that which I would say is pretty standard, I had no major problems.    

    One thing I did the in the weeks prior to the surgery especially the week before was to eat well and get my body as physically strong as possible and I think that helped alot.  I was up and walking the day after.  

    You are getting this surgery now?   

    dear LeoLady, so happy you

    dear LeoLady, so happy you are recovering well, and I hope everything continues to heal smoothly.
    I just saw this new post on the cholangiocarcinoma foundation discussion board and thought it might be relevant regarding adjuvant treatment:

    https://www.ncbi.nlm.nih.gov/pubmed/30094707

    <3 

     

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