Anyone out there with cancer of the ampula?

punkymay
punkymay Member Posts: 11
edited March 2014 in Rare and Other Cancers #1
I had a cancer lumped in with pancreatic cancer by docs because it is so rare. It is cancer of the ampulla of vader (I think of it as Darth Vader and just want to blurt out "I had Darth Vader". The treatment was just the same as for adenocarcinoma of the pancreas. I had the Whipple Proceedure followed by 4 mos. of chemo using Gemzar. I really need to hear from or about
someone else out there who experienced "Darth Vader". There are about 1000 per year in the US and that's all. I feel so all alone. Please respond even if you know of another person. This is cancer of the common valve that is shared by the liver, ball bladder and pancreas.

Comments

  • Windypep
    Windypep Member Posts: 4
    #2
    Hello, my mom had the whipple procedure 7/03 due to malignant tumors one in the ampulla of vater and the other in the duodenum. Both were stage 1 tumors. No lymph node involvement. This cancer is very rare. My mom had the whipple done at Cleveland Clinic by Dr. Walsh in which he removed the head of the pancreas, duodenum and gallbladder. No chemo/radiation was recommend to her by the oncologist at Cleveland Clinic, due to they did not know what benefit she would receive from it. She also has an ileostomy due to Familial adenomatous polyposis at the age of 31. Her large colon had hundreds of pre-cancerous/cancerous polyps in it. It has been 1 year since surgery with no problems, expect she does get tired easy. My thoughts are with you and good luck.
    Windy
  • snooz
    snooz Member Posts: 1
    #3
    they believe my husband has a small malignant tumor (their guess pancreatic). He will have the whipple. Was recovery as terrible as one of our doctors are telling us? Do you know of the best place to have this done? We are in chicago and are meeting with surgical oncology at northwestern- considering johns hopkins as well. Are you doing well? i hope to hear of people who are beating this- im terrified-
  • gp1093mp
    gp1093mp Member Posts: 1
    #4
    Hello,
    Saw your note about ampular cancer. My dad, age 75 was just diagnosed w/ this @ lahey clinic in MA. They suggest the Whipple. What was your experience w/ that procedure and w/ the diagnosis? As I understand it, ampular cancer is detected ealier than pancreatic cancer, and thus has a better prognosis. The whipple seems like a radical surgery, but is there a reasonable alternative.

    Thank you for any assistance.
  • dasaborner
    dasaborner Member Posts: 12
    #5
    My wife had a "Darth Vader" removed in February, 2003. It was a malignant tumor in the ampullar of vader and was discovered due to the fact that it blocked the common duct, which as you know is the duct that leads from the pancreas after it has joined up with the bile duct, and goes to the small intestine at the Ampullar of Vader. Because the blockage caused the bile to back up into the liver, the bile had nowhere to go and went into her bloodstream, causing jaundice and itching. Major itching! It was the itching that saved her life. She went to the skin doctor to get relief, and was told about the jaundice and then went for testing. The full whipple procedure was done at Memorial Sloan Kettering by Dr. William Jarnagan, on February 17, 2003. Because 5 lymph nodes were involved, chemo therapy and radiation were prescribed. Two years later, she has been said to be clear of all cancer, and is on 6 month scans.

    My wife would be interested in communicating with you about your experience. She can tell you a bit about my cousin, a professor at a college in North Carolina, who experienced the same operation, 11! years ago, and is doing well.
  • Reini
    Reini Member Posts: 22 Member
    #6
    dasaborner said:

    My wife had a "Darth Vader" removed in February, 2003. It was a malignant tumor in the ampullar of vader and was discovered due to the fact that it blocked the common duct, which as you know is the duct that leads from the pancreas after it has joined up with the bile duct, and goes to the small intestine at the Ampullar of Vader. Because the blockage caused the bile to back up into the liver, the bile had nowhere to go and went into her bloodstream, causing jaundice and itching. Major itching! It was the itching that saved her life. She went to the skin doctor to get relief, and was told about the jaundice and then went for testing. The full whipple procedure was done at Memorial Sloan Kettering by Dr. William Jarnagan, on February 17, 2003. Because 5 lymph nodes were involved, chemo therapy and radiation were prescribed. Two years later, she has been said to be clear of all cancer, and is on 6 month scans.

    My wife would be interested in communicating with you about your experience. She can tell you a bit about my cousin, a professor at a college in North Carolina, who experienced the same operation, 11! years ago, and is doing well.

    Hello, my husband (34yrold)had a malignant adenocarcinoma of the duodenum diagnosed Nov 04 ( 4 weeks after our baby girl was born) 6 weeks to the day she was born, Mia and I walked reini down to the operating thesatre to have the whipple resection, we never knew that the op was going to be so big, he was in intensive care for 5 days. We live in Sydney Australia .Unfortunatley 4 lymph nodes were affected so he has been havong chemo for the past 6 months and tommorrow is his last!!!! We have found it extremely hard to find anyone that has had this cancer so I guess finding you guys are the closest to it!!! The oncologist has said that the tumour was 'microsatellite unstable' very weird classification but it means it is most porbably a genetic syndrome called hnpcc that predisposes a person to a wide range of cancers due to defective mismatch repair gene. Our little baby has a 50% chance of inheriting the gene. We have not been able to find anyone who has survived this cancer because it is so rare. Reini's tumour was located in the wall between the pancreas and the duodenum they found it when they did an endoscoy on what they thought was an ulcer. The gastroenterologist congratulated him on the second largest ulcer he had seen but took a biopsy thank god he did for the tests showed that it was cancer. the oncologist is quite positive, he has been having fortnightly chemo of 5fu leucovorin and cpt11. The surgeon is not that positive and has said that the lymph nodes infected drain to the liver which is obviously very close. It is great to hear of survivor stories of cancers in ther same area. sorry for talking my head off, we still feel that this is just a terrible dream
  • jimnsherry
    jimnsherry Member Posts: 23
    #7
    gp1093mp said:

    Hello,
    Saw your note about ampular cancer. My dad, age 75 was just diagnosed w/ this @ lahey clinic in MA. They suggest the Whipple. What was your experience w/ that procedure and w/ the diagnosis? As I understand it, ampular cancer is detected ealier than pancreatic cancer, and thus has a better prognosis. The whipple seems like a radical surgery, but is there a reasonable alternative.

    Thank you for any assistance.

    hi, my name is jim and i was diagnosed with ampulla of vater cancer in dec, see my web page you can talk with me anytime. golfwrench@msn.com or 765-339-4790
  • AllyPaul
    AllyPaul Member Posts: 4
    #8
    How are you doing?
    My husband was just dx w/ this cancer and is scheduled for a whipple next week. I'm so scared. how are you doing now?
  • AllyPaul
    AllyPaul Member Posts: 4
    #9
    How are you doing?
    My husband was just dx w/ this cancer and is scheduled for a whipple next week. I'm so scared. how are you doing now?
  • mthprv
    mthprv Member Posts: 1
    #10
    AllyPaul said:

    How are you doing?
    My husband was just dx w/ this cancer and is scheduled for a whipple next week. I'm so scared. how are you doing now?

    I had the whipple on
    I had the whipple on 7/20/2009. I'm at home recovering. I'm getting my 3 drain tubes out next tuesday. I feel great. How have things gone with your husband?
  • Daddyslittlegirl
    Daddyslittlegirl Member Posts: 11
    #11
    mthprv said:

    I had the whipple on
    I had the whipple on 7/20/2009. I'm at home recovering. I'm getting my 3 drain tubes out next tuesday. I feel great. How have things gone with your husband?

    Docs say the Whipple surgery will kill my dad??
    My dad is 86 yrs old and has a magn tumor located right where the bile duct and pancrease duct meet. We have seee 2 doctors and they both say that the risks involved are much too risky for my dad to survive the surgery. One doctor said that this is considered "the mother of all surgeries"?

    They have pretty much given my dad the option to do the surgery or start chemo. Of course they scared my poor dad out of his mind by the "mortality rates, etc" that he has chosen chemo. But I'm afraid that chemo will deteriorate him even further!

    Is this surery really that devastating to recover from? Any feedback from anyone who has had this would be so greatly appreciated! He does have a pace maker from a heart attack that he had back in 2007 and has had his right small intestine resectioned already also.

    Thanks!
  • MSANNE1020
    MSANNE1020 Member Posts: 4
    #12
    AMPULLA OF VATER CANCER

    YES I DID, AND SO FAR SO GOOD, I HAD THE BIG SURGERY, AND THEN OVER ONE YEAR OF CHEMOTHERAPY, WE STARTED WITH GEMZAR, THIS WAS NOT WORKING, IT (THE BIG C), SPREAD TO THE LIVER, SO I WAS THEN TREATED WITH 5FU CHEMOTHERAPY, FOR 11 MONTHS, THIS SEEMS TO HAVE DONE THE JOB, I AM CANCER FREE AS OF JAN. 2013 SO FAR AS THE PET SCAN CAN SEE, ALSO MY BLOOD WORK THAT IS DONE EVERY 6 WEEKS, AS MY POWER PORT MUST BE FLUSHED AT THAT SAME TIME, SO WHY NOT CATCH TWO BIRDS AT THE SAME TIME, IS SHOWING GOOD RESULTS, I DO NOT KNOW ALL THERE IS TO KNOW OR TO ASK ABOUT ALL THIS BLOOD WORK, BUT I AM TOLD IT AIDS IN PROVING I AM CANCER FREE, SO I GO AND GET IT ALL DONE. lol I COULD NOT FIND MUCH INFORMATION ABOUT THE TYPE OF CANCER I HAD, UNTIL NOW, AND IT SEEMS A LOT MORE PEOPLE ARE BEING STRUCK DOWN BY IT AND I CAN'T FIND THE WHY OF IT ALL, THE WHAT CAUSES IT OR ANYTHING, HOW ABOUT ANY OF YOU OTHERS OUT THERE FIGHTING IT???????? LET ME KNOW AND PRAYERS TO ALL OF YOU AND ME WHO ARE FIGHTING THIS VERY RARE FORM OF CANCER.....

    ANNE

  • MSANNE1020
    MSANNE1020 Member Posts: 4
    #13
    Daddyslittlegirl said:

    Docs say the Whipple surgery will kill my dad??
    My dad is 86 yrs old and has a magn tumor located right where the bile duct and pancrease duct meet. We have seee 2 doctors and they both say that the risks involved are much too risky for my dad to survive the surgery. One doctor said that this is considered "the mother of all surgeries"?

    They have pretty much given my dad the option to do the surgery or start chemo. Of course they scared my poor dad out of his mind by the "mortality rates, etc" that he has chosen chemo. But I'm afraid that chemo will deteriorate him even further!

    Is this surery really that devastating to recover from? Any feedback from anyone who has had this would be so greatly appreciated! He does have a pace maker from a heart attack that he had back in 2007 and has had his right small intestine resectioned already also.

    Thanks!

    WHIPPLE SURGERY
    IT IS THE MOTHER OF ALL SURGERIES, I HAD MINE IN JUNE 2010, ALMOST 12 HOURS ON THE TABLE, ALMOST DIDN'T SURVIVE THE AFTERMATH, HERNIAS (MY GUT RUPTURED IN MY BELLY), REPAIR, NOT ONCE BUT IN 2 1/2 YEARS IT TOOK 3 SURGERIES TO FINALLY FIX THAT PROBLEM, I DEVELOPED SEVERAL LIFE THREATENING ABCESS'S (5), ALL OF WHICH WERE FROM DEEP IN MY BELLY AREA, ALL REQUIRED SURGERY, MY CHEMOTHERAPY REGIME HAD TO BE PUT OFF UNTIL DEC. 2010 WHICH IF I HAD BEEN 1 MORE WEEK LATER, IT WOULD HAVE BEEN TO LATE, SO I WAS TOLD, BUT AS IT WAS I BEGAN WITH GEMZAR, BY JUNE 2011 WE KNEW IT WAS NOT DOING THE JOB, I BY NOW HAD CANCER TO MY LIVER, I FIRED MY ONCOLIGIST AND FOUND A NEW ONE (THANK GOD), SHE BEGAN ME RIGHT AWAY ON 5FU, IT WAS A RUGGED, TERRIBLE, HORRIBLE, AND TERRORIZING EXPERIENCE, I WAS SO SICK SO VERY SICK, BUT MY DOCTOR TOLD ME THIS WOULD SAVE ME, AND IT DID, AFTER THE NIGHTMARE I WAS GRATEFUL I DID NOT STOP, WHICH I HAD THOUGHT ABOUT DOING SEVERAL TIMES), BECAUSE I AM NOW "CANCER FREE", AS FAR AS ALL CAN TELL, ALL MY PET SCANS COME BACK CLEAN, ALL MY LATEST BLOOD WORK IS CLEAN, NO VISIBLE, TREATABLE CANCER CELLS CAN BE SEEN. I HAVE TO BE STRONG AND TRY NOT TO WORRY ABOUT THE UNSEEN/UNKOWN, RIGHT? IF YOUR FATHER HAS CEHMO I HOPE THEY WILL TRY HIM ON THE 5FU  ANNE
  • MSANNE1020
    MSANNE1020 Member Posts: 4
    #14
    dasaborner said:

    My wife had a "Darth Vader" removed in February, 2003. It was a malignant tumor in the ampullar of vader and was discovered due to the fact that it blocked the common duct, which as you know is the duct that leads from the pancreas after it has joined up with the bile duct, and goes to the small intestine at the Ampullar of Vader. Because the blockage caused the bile to back up into the liver, the bile had nowhere to go and went into her bloodstream, causing jaundice and itching. Major itching! It was the itching that saved her life. She went to the skin doctor to get relief, and was told about the jaundice and then went for testing. The full whipple procedure was done at Memorial Sloan Kettering by Dr. William Jarnagan, on February 17, 2003. Because 5 lymph nodes were involved, chemo therapy and radiation were prescribed. Two years later, she has been said to be clear of all cancer, and is on 6 month scans.

    My wife would be interested in communicating with you about your experience. She can tell you a bit about my cousin, a professor at a college in North Carolina, who experienced the same operation, 11! years ago, and is doing well.

    OUR CASES ARE SO MUCH ALIKE

    EXCEPT I HAD BEEN "ILL", FOR ALMOST 4 YEARS, MY MAIN FIRST SYMPTON WAS "REFLUX", NO MATTER, THE DIET, NO MATTER THE TREATMENT, I HAD THE MOST AWFUL REFLUX, THEN AS I BECAME MORE ILL, I ALL OF A SUDDEN DROPPED 45 POUNDS, OOPS THAT GOT MY DOCTORS ATTENTION, SO HERE COME ALL THE SCANS AND LOTS OF TEST, "NOT THE RIGHT KIND THOUGH)" BECAUSE NOTHING SHOWED UP", I MEAN "NOTHING", SO UNTI, MAY OF 2010 I WAS GETTIN MORE ILL AND MORE ILL, AND THEN OMG I TURNED "YELLOW", I WAS WHISKED AWAY TO THE HOSPITAL (DID NOT PASS THRU ER DID NOT PASS GO JUST STRAIGHT TO A ROOM), AND THEN THE GAMES BEGAN.........TEST.....TEST......TEST.....SCAN.....SCAN....AND MORE SCANS(AND JUST TO LET EVERYONE OUT THERE KNOW MY CANCER NEVER SHOWED ON ANY SCANS OR TEST),  I WAS TOLD I WAS IN THE MIDDLE OF A "GALL BLADDER ATTACK", IT WOULD HAVE TO COME OUT, THANK GOD FOR DR. JOHNSON, WHO SAID UHM LETSJ UST DO ONE MORE TEST BEFORE WE GO CUTTING HER OPEN, WHICH WAS DONE, THE CAMERA DOWN THRU MY THROAT AND GUESS WHAT I HAD, I HAD CANCER "AMPULLA OF VATER" CANCER, I NEVER HEARD OF SUCH AN ORGAN NOR DID I KNOW WHERE IT WAS, NOR DID I KNOW WHAT IT DID FOR OUR BODY, NOR DID I KNOW HOW TO FIX IT, I JUST KNEW IT DIDN'T SOUND GOOD AT ALL....AND IT WASN'T, NOR HAS THE AFTERMATH BEEN GOOD, FUN OR EXCITING, THIS HAS BEEN THE BATTLE OF MY LIFE AND I AM NOT DONE YET. ALL THOUGH I SHOW TO BE "CANCER FREE", I AM TOLD THIS JUST MEANS THEY CAN'T SEE CANCER, SO HOW CAN THEY TREAT CANCER, UHM REMBER I TOLD YOU EARLIER MY ORGINAL CANCER NEVER SHOWED IT'S UGLY HEAD ON ANY TEST I HAD........SURE MAKES ME WONDER HOW THE (THE DOCTOR'S) ALL EXPECT TO BE LIVING A WORRY FREE LIFE  lol  I AM HERE TO TELL YOU THAT CAN'T BE DONE, I DO NOT TRUST THEM, I DO TRUST THE TEST, NOR DO I TRUST THE WORDS "YOU ARE CANCER FREE" I THINK WHEN YOU GOT IT YOU HAVE IT ...........FOREVER!!!!!!! YOU JUST HAVE TO FIGHT UNTIL THERE IS NO MORE FIGHT LEFT IN YOU, I AM HERE FOR THE LONG HAUL, AND I WILL FIGHT FOR AS LONG AS I CAN.   WHY ARE THESE POST FROM SO MANY YEARS AGO, ARE ANY OF YOU STILL OUT HERE??????? I HOPE SO I JUST FOUND THIS SIGHT AND WOULD LOVE THE CHAT WITH SOMEOME GOING THRU THE SAME THING.    ANNE

  • shelbelle0123
    shelbelle0123 Member Posts: 4
    #15
    dasaborner said:

    My wife had a "Darth Vader" removed in February, 2003. It was a malignant tumor in the ampullar of vader and was discovered due to the fact that it blocked the common duct, which as you know is the duct that leads from the pancreas after it has joined up with the bile duct, and goes to the small intestine at the Ampullar of Vader. Because the blockage caused the bile to back up into the liver, the bile had nowhere to go and went into her bloodstream, causing jaundice and itching. Major itching! It was the itching that saved her life. She went to the skin doctor to get relief, and was told about the jaundice and then went for testing. The full whipple procedure was done at Memorial Sloan Kettering by Dr. William Jarnagan, on February 17, 2003. Because 5 lymph nodes were involved, chemo therapy and radiation were prescribed. Two years later, she has been said to be clear of all cancer, and is on 6 month scans.

    My wife would be interested in communicating with you about your experience. She can tell you a bit about my cousin, a professor at a college in North Carolina, who experienced the same operation, 11! years ago, and is doing well.

    Hello!  I have just gone thru

    Hello!  I have just gone thru EXACTLYYYY the same thing your wife went through 14 weeks ago.  I feel like the only living being on the pllanet with this.  I do hope you are still on here so I can chat with you.

  • shelbelle0123
    shelbelle0123 Member Posts: 4
    #16
    MSANNE1020 said:

    AMPULLA OF VATER CANCER

    YES I DID, AND SO FAR SO GOOD, I HAD THE BIG SURGERY, AND THEN OVER ONE YEAR OF CHEMOTHERAPY, WE STARTED WITH GEMZAR, THIS WAS NOT WORKING, IT (THE BIG C), SPREAD TO THE LIVER, SO I WAS THEN TREATED WITH 5FU CHEMOTHERAPY, FOR 11 MONTHS, THIS SEEMS TO HAVE DONE THE JOB, I AM CANCER FREE AS OF JAN. 2013 SO FAR AS THE PET SCAN CAN SEE, ALSO MY BLOOD WORK THAT IS DONE EVERY 6 WEEKS, AS MY POWER PORT MUST BE FLUSHED AT THAT SAME TIME, SO WHY NOT CATCH TWO BIRDS AT THE SAME TIME, IS SHOWING GOOD RESULTS, I DO NOT KNOW ALL THERE IS TO KNOW OR TO ASK ABOUT ALL THIS BLOOD WORK, BUT I AM TOLD IT AIDS IN PROVING I AM CANCER FREE, SO I GO AND GET IT ALL DONE. lol I COULD NOT FIND MUCH INFORMATION ABOUT THE TYPE OF CANCER I HAD, UNTIL NOW, AND IT SEEMS A LOT MORE PEOPLE ARE BEING STRUCK DOWN BY IT AND I CAN'T FIND THE WHY OF IT ALL, THE WHAT CAUSES IT OR ANYTHING, HOW ABOUT ANY OF YOU OTHERS OUT THERE FIGHTING IT???????? LET ME KNOW AND PRAYERS TO ALL OF YOU AND ME WHO ARE FIGHTING THIS VERY RARE FORM OF CANCER.....

    ANNE

    Her I am!!!! 
    I feel like the

    Her I am!!!! 

    I feel like the freak show of cancer and the only one on the entire planet with it.  I would love to Chat anytime.  Had the whipple on Nov 27th '12  Followed by a 6 wk horrible double combination of chem rad at the same time.  Mine was stage 1A no lymph/panc invasion (that we know of) and I am told I am cancer free.  Thr Xeloda chemo was "suppose" to have no hair loss...liars.... I am loosing tons daily even 5 weeks after I only took it for 8 days.   Dr's pulled me off due to what it was doing to me.  please keep me posted on your progress. God Bless u.

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