Growth in Bile duct possible whipple surgery

kim198
kim198 Member Posts: 4
edited March 2014 in Rare and Other Cancers #1
I have been just been through a battery of tests and was just told that I have a growth in my bile duct. I had an ercp and had a stint put in. I have been told by my doctor that he doesn't know if it is cancer or not but I think I still have to have the whipple procedure. This sounds really scary. Just wondering if anyone is in the same situation or has had the same situation. any advice would be great. thanks

Comments

  • Amybeth052975
    Amybeth052975 Member Posts: 3
    #2
    Hi Kim,

    I posted underneath yours about my Mother In Law. She is in Boston right now and wasn't able to get the Whipple done, for now. They went in and they saw that it was in fact wrapped around an artery if not two and sewed her back up.

    I understand your being scared, you don't know what you have yet and you just want it out! She actually had to have a biopsy of the tumor for them to know it was exactly that "C" word. Then you go from there.

    You can read my post below also to know where i am coming from.

    The only think that i would change, was when we KNEW it was cancer, i would have liked her to have gotten an oncologist right away. She is in the hospital now and the surgeon just talked to her, but no oncologists are availble for her to start treatment yet.

    Let us know how you are. It will be ok cause there are alot of people out there with this and you can always come here and vent!!!!

    My granmother used to have a shot of Bailey's every night......she swore it made the cancer shrink!!!!

    Love,

    Amy
  • kim198
    kim198 Member Posts: 4
    #3
    Amybeth052975 said:

    Hi Kim,

    I posted underneath yours about my Mother In Law. She is in Boston right now and wasn't able to get the Whipple done, for now. They went in and they saw that it was in fact wrapped around an artery if not two and sewed her back up.

    I understand your being scared, you don't know what you have yet and you just want it out! She actually had to have a biopsy of the tumor for them to know it was exactly that "C" word. Then you go from there.

    You can read my post below also to know where i am coming from.

    The only think that i would change, was when we KNEW it was cancer, i would have liked her to have gotten an oncologist right away. She is in the hospital now and the surgeon just talked to her, but no oncologists are availble for her to start treatment yet.

    Let us know how you are. It will be ok cause there are alot of people out there with this and you can always come here and vent!!!!

    My granmother used to have a shot of Bailey's every night......she swore it made the cancer shrink!!!!

    Love,

    Amy

    Thanks Amy
    Sad to her about your mother in law. I am new at all this but I think the doctors need to refer to an oncologist. That is who I was to referred to. The only thing I don't like is not knowing until I have this procedure done. He is going to decide if the big whipple will be done once he goes in(surgery). I guess they are scared to do anything else because possible disturbing of the tumor in case it is cancer. Seems harse if it isn't cancer but I guess that is the procedure either way. Pancreatic Cancer is very nasty.
    Anywasy I am venting and I am glad to be able to do this.
    kim
  • dasaborner
    dasaborner Member Posts: 12
    #4
    Kim, I am two and a half years out from my Whipple which discovered the tumor was in the Common Duct, at the Ampular of Vader, and is called Ampulary Carcinoma. I would love to tell you about my excellent experience at Memorial Sloan in NYC and of Dr. Jeremy Kortmansky my oncologist (who has just left Sloan for New Haven) and of my surgeon, Dr. William Jarnagan. You can Google the doctors to see their history, specialties. You probably have had you surgery by now. Hope you are well. I'd be most interested in sharing post operative stomach problems that are so much better now. Chemo and radiation for 6 weeks laid me low. Doing well now. Have gained back about 20 lbs. I am a 63 year old female retire (guess from what) teacher, back at work part time. Good luck to you.
  • kim198
    kim198 Member Posts: 4
    #5
    dasaborner said:

    Kim, I am two and a half years out from my Whipple which discovered the tumor was in the Common Duct, at the Ampular of Vader, and is called Ampulary Carcinoma. I would love to tell you about my excellent experience at Memorial Sloan in NYC and of Dr. Jeremy Kortmansky my oncologist (who has just left Sloan for New Haven) and of my surgeon, Dr. William Jarnagan. You can Google the doctors to see their history, specialties. You probably have had you surgery by now. Hope you are well. I'd be most interested in sharing post operative stomach problems that are so much better now. Chemo and radiation for 6 weeks laid me low. Doing well now. Have gained back about 20 lbs. I am a 63 year old female retire (guess from what) teacher, back at work part time. Good luck to you.

    Thanks for the information. I have had the surgery and things are progressing slowly. I ended up with an infection on my incision so that has set things back. After 3 different types of antiboitics it wasn't very good on my stomach. I have found out that the tumor was cancer and they are pretty it is ampullary vator or dudenuom. Probably in about 6 weeks I will start treatment for chemotherapy. The doctor took out 6 lymph nodes and one was aftected. That is not so good. It sounds like the chemo I will have my hair will probably not fall out. All is well and my eating is getting better. I have to be so careful or I will pay for it. Thanks for the reply and would love to keep in touch. I had my surgery on September 30th
  • kitchener
    kitchener Member Posts: 1
    #6
    kim198 said:

    Thanks for the information. I have had the surgery and things are progressing slowly. I ended up with an infection on my incision so that has set things back. After 3 different types of antiboitics it wasn't very good on my stomach. I have found out that the tumor was cancer and they are pretty it is ampullary vator or dudenuom. Probably in about 6 weeks I will start treatment for chemotherapy. The doctor took out 6 lymph nodes and one was aftected. That is not so good. It sounds like the chemo I will have my hair will probably not fall out. All is well and my eating is getting better. I have to be so careful or I will pay for it. Thanks for the reply and would love to keep in touch. I had my surgery on September 30th

    is your appetite and digestion back to normal yet? My dad had the whipple 4 weeks ago.
  • kim198
    kim198 Member Posts: 4
    #7
    kitchener said:

    is your appetite and digestion back to normal yet? My dad had the whipple 4 weeks ago.

    I had my surgery just about 6 weeks ago. I would have to say that I can almost eat anything but my appetite is not the same. I have problems with, gas being trapped and things are just not back to normal. I take one day at a time.
  • mrslar
    mrslar Member Posts: 9
    #8
    kim198 said:

    I had my surgery just about 6 weeks ago. I would have to say that I can almost eat anything but my appetite is not the same. I have problems with, gas being trapped and things are just not back to normal. I take one day at a time.

    Ampullary Cancer
    I was wondering if anyone who posted previously can tell me how they are doing now. My brother has a Whipple's procedure on 03/12/10 at Johns Hopkins for ampullary cancer. He will start radiation and then chemo in about 5 weeks. He is only 43 years old, and we are trying to get as much information from people who have gone through this as we can. Any input would be appreciated! Thanks.
  • writelady
    writelady Member Posts: 1
    #9
    mrslar said:

    Ampullary Cancer
    I was wondering if anyone who posted previously can tell me how they are doing now. My brother has a Whipple's procedure on 03/12/10 at Johns Hopkins for ampullary cancer. He will start radiation and then chemo in about 5 weeks. He is only 43 years old, and we are trying to get as much information from people who have gone through this as we can. Any input would be appreciated! Thanks.

    whipple procedure
    I had a whipple in June 2009. I was lucky in that they wwere able to get it all and it had not spread. I was in the hospital 8 days and was really sick. It is a big surgery. It took several weeks before I was able to eat much. Avoid sugars and small frequent meals. I waited 3 months then had 9 gemzar treatments, had a month break, then 28 radiation treatments, waited another month and am now having gemzar again. I have only had 2 of 9 treatments because my counts are so bad from the radiation. They are going to reduce the dosage by 20% and give me 6 treatments instead of 9. My CAT scanns have all been clean so far. So far I have been very fortunate. I hope this was helpful I am being treated at the Hershey cancer institute in Hershey PA. They have been wonderful.
  • mrslar
    mrslar Member Posts: 9
    #10
    writelady said:

    whipple procedure
    I had a whipple in June 2009. I was lucky in that they wwere able to get it all and it had not spread. I was in the hospital 8 days and was really sick. It is a big surgery. It took several weeks before I was able to eat much. Avoid sugars and small frequent meals. I waited 3 months then had 9 gemzar treatments, had a month break, then 28 radiation treatments, waited another month and am now having gemzar again. I have only had 2 of 9 treatments because my counts are so bad from the radiation. They are going to reduce the dosage by 20% and give me 6 treatments instead of 9. My CAT scanns have all been clean so far. So far I have been very fortunate. I hope this was helpful I am being treated at the Hershey cancer institute in Hershey PA. They have been wonderful.

    whipple procedure
    Good luck with your treatment, writelady! Gemzar must be the chemo of choice for this type of cancer? From what I have been reading, it seems that is what most people have been on. Have you had many side affects from the radiation and chemo? We also live in PA - about 1-1/2 hours northeast of Hershey.
  • dara
    dara Member Posts: 2
    #11
    dasaborner said:

    Kim, I am two and a half years out from my Whipple which discovered the tumor was in the Common Duct, at the Ampular of Vader, and is called Ampulary Carcinoma. I would love to tell you about my excellent experience at Memorial Sloan in NYC and of Dr. Jeremy Kortmansky my oncologist (who has just left Sloan for New Haven) and of my surgeon, Dr. William Jarnagan. You can Google the doctors to see their history, specialties. You probably have had you surgery by now. Hope you are well. I'd be most interested in sharing post operative stomach problems that are so much better now. Chemo and radiation for 6 weeks laid me low. Doing well now. Have gained back about 20 lbs. I am a 63 year old female retire (guess from what) teacher, back at work part time. Good luck to you.

    new to board, looking for this shared experience and results
    Hi, I also had bile duct cancer which originated in the pancreas, and had a whipple procedure at Memorial Sloane; my surgeon was also Dr. Jarnagan. I was very pleased with him, thought he was great and was fortunate to not require chemo or radiation afterwards. But two years later, I continue to experience episodic stomach pain and have generally done well with it, just being glad the cancer was caught in time and treated. Today, I've lost patience with this unpredictable pain and have been trying to find out if anyone else has had similar experience...

    I'm so glad you're doing well, have gained back the weight. Just trying to find out if you still experience pain and how you handle it...Thanks so much.
  • DBJ1234
    DBJ1234 Member Posts: 5
    #12
    Whippple Surgery
    I had the same type of symptoms a ercp and a stint. I had the Whipple procedure because the growth was eventually determined to be cancer. In addition to the Whipple I had radiation and chemo. My doctor estimated I was at stage one.

    The operation and other therpy was done in 2001 and I have survived for 9.5 years.

    I hope this is helpful.

    Dennis
  • DBJ1234
    DBJ1234 Member Posts: 5
    #13
    dara said:

    new to board, looking for this shared experience and results
    Hi, I also had bile duct cancer which originated in the pancreas, and had a whipple procedure at Memorial Sloane; my surgeon was also Dr. Jarnagan. I was very pleased with him, thought he was great and was fortunate to not require chemo or radiation afterwards. But two years later, I continue to experience episodic stomach pain and have generally done well with it, just being glad the cancer was caught in time and treated. Today, I've lost patience with this unpredictable pain and have been trying to find out if anyone else has had similar experience...

    I'm so glad you're doing well, have gained back the weight. Just trying to find out if you still experience pain and how you handle it...Thanks so much.

    Stomach Pain

    I had the Whipple 9.5 years ago along with chemo and radiation. I have struggled with stomach pain since the day I had the surgery. Sometimes it is unberable. The only releif from the pain has been from taking Chreon tablets after eating.

    Hope this is helpful.
  • DBJ1234
    DBJ1234 Member Posts: 5
    #14
    dara said:

    new to board, looking for this shared experience and results
    Hi, I also had bile duct cancer which originated in the pancreas, and had a whipple procedure at Memorial Sloane; my surgeon was also Dr. Jarnagan. I was very pleased with him, thought he was great and was fortunate to not require chemo or radiation afterwards. But two years later, I continue to experience episodic stomach pain and have generally done well with it, just being glad the cancer was caught in time and treated. Today, I've lost patience with this unpredictable pain and have been trying to find out if anyone else has had similar experience...

    I'm so glad you're doing well, have gained back the weight. Just trying to find out if you still experience pain and how you handle it...Thanks so much.

    Stomach Pain

    I had the Whipple 9.5 years ago along with chemo and radiation. I have struggled with stomach pain since the day I had the surgery. Sometimes it is unberable. The only releif from the pain has been from taking Chreon tablets after eating.

    Hope this is helpful.
  • DBJ1234
    DBJ1234 Member Posts: 5
    #15
    dara said:

    new to board, looking for this shared experience and results
    Hi, I also had bile duct cancer which originated in the pancreas, and had a whipple procedure at Memorial Sloane; my surgeon was also Dr. Jarnagan. I was very pleased with him, thought he was great and was fortunate to not require chemo or radiation afterwards. But two years later, I continue to experience episodic stomach pain and have generally done well with it, just being glad the cancer was caught in time and treated. Today, I've lost patience with this unpredictable pain and have been trying to find out if anyone else has had similar experience...

    I'm so glad you're doing well, have gained back the weight. Just trying to find out if you still experience pain and how you handle it...Thanks so much.

    Stomach Pain

    I had the Whipple 9.5 years ago along with chemo and radiation. I have struggled with stomach pain since the day I had the surgery. Sometimes it is unberable. The only releif from the pain has been from taking Chreon tablets after eating.

    Hope this is helpful.
  • RayLogu
    RayLogu Member Posts: 19
    #16
    mrslar said:

    Ampullary Cancer
    I was wondering if anyone who posted previously can tell me how they are doing now. My brother has a Whipple's procedure on 03/12/10 at Johns Hopkins for ampullary cancer. He will start radiation and then chemo in about 5 weeks. He is only 43 years old, and we are trying to get as much information from people who have gone through this as we can. Any input would be appreciated! Thanks.

    whipple / ampullary cancer
    I am 77 and had ampulla of vater cancer with whipple srugery 5/25/10. finished up 3 weeks with radiation and oral chemo(xeloda) concurrent. I am finally beginning to taste things as normal. I had stomach erosion from the Xeloda and had to discontinue the Xeloda for 2 weeks due to blood in the stool and treatment to clear up the mild stomach bleeding.
    I did not have to interrup the radiaiton. the worst for me was the stomach cramps, unexpected diarreah and nausea from the radiaiton, some days I was fin and other days it a slight discomfort, nothing enough to keep home more than 4 hours or so. Keep good records of your episodes of side effects for the doc it is very important so they know how y0u tolerate treatment and cn make adjustments if necessary.
    if you have any other questions you may contact me directly at topnotchplus@yahoo.com
    regards and my best to you, Ray ... North Carolina
  • RayLogu
    RayLogu Member Posts: 19
    #17
    dara said:

    new to board, looking for this shared experience and results
    Hi, I also had bile duct cancer which originated in the pancreas, and had a whipple procedure at Memorial Sloane; my surgeon was also Dr. Jarnagan. I was very pleased with him, thought he was great and was fortunate to not require chemo or radiation afterwards. But two years later, I continue to experience episodic stomach pain and have generally done well with it, just being glad the cancer was caught in time and treated. Today, I've lost patience with this unpredictable pain and have been trying to find out if anyone else has had similar experience...

    I'm so glad you're doing well, have gained back the weight. Just trying to find out if you still experience pain and how you handle it...Thanks so much.

    bile duct cancer and chemo
    I am interested to know why you did not require chemo and radiation.
    My ampullary cancer was caught very early, margins of tumor and one lymp node clear at time of surgery, and cancer cells were detected in tumor and one lympy node with final pathology report. Although surgeon told us day of surgery all organs looked good and if the pathology report finding was cancer free the surgery was the only treatment needed, if cancer was detected may recommend mild chemo as precaution. I took 6 weeks radiation concurrent with Xeloda and have a clean scan 3 weeks post-treatment, yet the onocologyst now is suggesting Gemzar. Xeloda and radiation I was told was precautionary to clean up any microscopic cells of cancer that may remained from sugery.
    I was fortunate to be able to start radiation and xeloda 8 weeks post-op and just starting to feel better 3 weeks after completion of treatments. I dread the thought of sickness from another round of a different treatment. I am 77 years old and did have some toxicity build up from xeloda and had to stop the xeloda for 2 weeks.
    any info you share as I ponder the thoughts of more chemo will be appreciated.
    regards, Ray
  • jespinola
    jespinola Member Posts: 3
    #18
    RayLogu said:

    bile duct cancer and chemo
    I am interested to know why you did not require chemo and radiation.
    My ampullary cancer was caught very early, margins of tumor and one lymp node clear at time of surgery, and cancer cells were detected in tumor and one lympy node with final pathology report. Although surgeon told us day of surgery all organs looked good and if the pathology report finding was cancer free the surgery was the only treatment needed, if cancer was detected may recommend mild chemo as precaution. I took 6 weeks radiation concurrent with Xeloda and have a clean scan 3 weeks post-treatment, yet the onocologyst now is suggesting Gemzar. Xeloda and radiation I was told was precautionary to clean up any microscopic cells of cancer that may remained from sugery.
    I was fortunate to be able to start radiation and xeloda 8 weeks post-op and just starting to feel better 3 weeks after completion of treatments. I dread the thought of sickness from another round of a different treatment. I am 77 years old and did have some toxicity build up from xeloda and had to stop the xeloda for 2 weeks.
    any info you share as I ponder the thoughts of more chemo will be appreciated.
    regards, Ray

    Bile Duct Cancer
    Hi Ray:

    How are you doing now? My father was diagnosed with Bile Duct Cancer in Sept. Had the Whipple Sept 21.

    Today was a big day. The feeding tube was taken out, he got markers for his radiation therapy and the oncologist told us the radiation/chemo (Gemzar) would begin Nov 8th.

    Interested to see how you are doing, how are your scans? Any info you think would be helpful to my dad?
  • jespinola
    jespinola Member Posts: 3
    #19
    mrslar said:

    Ampullary Cancer
    I was wondering if anyone who posted previously can tell me how they are doing now. My brother has a Whipple's procedure on 03/12/10 at Johns Hopkins for ampullary cancer. He will start radiation and then chemo in about 5 weeks. He is only 43 years old, and we are trying to get as much information from people who have gone through this as we can. Any input would be appreciated! Thanks.

    Bile Duct Cancer
    How is your brother doing now?

    My dad had the Whipple a month ago and just got his feeding tube removed...start chemo and radiation Nov 8

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