My 44 yr. old brother

On 1/19/2008 gazalymo wrote:

I'm 22 years old, and i just had a whipple opeartion 4 month ago. I had ampullary cancer, it sound uncommon, yah my dr's were shocked due to my age, also due to my health, im a healthy men and  i never got sick in my life this is the frist thing  poped up in my life. I had 14 lymp nodes removed none of them were cancers and they were free of tumors. My dr told me that i had a stage 1 ampullary cancer., and i did not need to go for chemo or radiation. Is ampullary cancer the same as pancreatic cancer or not, whats the difference?I was just wondering after this kind of operation  can you be cured, is their any chance of recurrence?  what is the survivale rate after being diagonsed  for stage 1?Please any one who more information about this type of cancer could get me any helpfull infromation on it.                                                          thanks  

Hey there, hope I can help in any way.  First of all, congratulations for coming to this site and for researching!  You're 22 and yet this is some hefty wisdom on your part.  

My Mom is and R.N. and very thorough with  research and care of my Dad (with a whipple years ago and now with metastatic cancer).  I help her with research and what we've found is that Ampullary cancer is far less aggressive than Pancreatic Cancer.  It's very rare, in part, because it usually gets discovered after it's very advanced and it's assumed that it's pancreatic.  There are no trials for this kind of cancer YET and if anyone has learned of any, LET US ALL KNOW!  

Because of your youth, your otherwise great health, and it wasn't discovered in any lymph nodes, you have the best of conditions to maintain a healthy happy life.  However, YOU MUST GET ANOTHER OPINION.  It must be by a very experienced Medical Oncologist who has HAD OTHER CASES OF AMPULLARY CANCER.  Very hard to find this but not only do you need this other (or multiple) opinions in case it's thought that chemo is a safe idea, but for your (and your loved ones') peace of mind.  The opinion must come from someone who has nothing to do with the medical group or hospital that your current oncologist is affiliated with.  (They all play golf, do conferences, whatever and when they know each other, they don't like to step on toes and won't give you a real, direct opinion).

I also cannot stress this enough, 5 years after my father's Whipple, Dad fell and it was thought that he cracked a rib.  For months and months my Dad complained of the paid and told his oncologist over and over.  By the time he demanded a CAT scan, he was in the Emergency with pain and the  Cancer had metastacised thoughout his bones, and lymph nodes.  If you experience ANY abnormal pain, DEMAND to have it looked at (CAT scan, or the best test to date: PET scan).  In fact, demand a yearly CAT scan, EVERY SIX MONTHS.  What you have going against you is that you are young and healthy and they might discredit you... YOU HAVE TO BE IN CHARGE OF YOUR OWN HEALTH AND LIFE.  Do not just throw your life into the thoughts and hands of a doctor (who has MANY patients)...  

My Mom survived breast cancer and was getting an MRI every six months.  Otherwise she lived life normally.  You are just taking logical precautions by demanding CAT scans.  THis way you don't have to be worried about every little gas bubble.  

Finally, my advice is to see a nutritionist who will optimize your body through nutrition.  You don't have to think they are nuts (as I did) or will make you eat/do anything you don't want to.  You don't have to stop enjoying food or junk  foods but its one of the things you can control in your life (along with exercise) and feel like you are doing everything you can do to keep the cancer from coming back.  It will empower you.

I pray to God for you to love and appreciate every moment of your new life.  They caught it in time!  It's a miracle and I'm so happy for you!  NOW LIVE!

Michelle 

Michelle you gave me the courage to enjoy my new life, and to be strong beating this cancer from coming back, I’m so glad that they found this so early. A friend of mine always tells me to thanks God for noticing this early and getting diagnosed in its early stage. Now the only thing Michelle is I’m going to follow our advice and pray to God for each moment I spent and enjoy in my life.  

                                                                    Thanks Michelle 

Thank you!!! And you are in my prayers - lot's of love,

Michelle 

Hi Mine was confined to the ampulla too,  and i had 14 lymph node were taken out and none of them were cancer also free of tumor, what stage was yours and how old were you when you had this type of cancer. Mine was stage 1 as the report shows, i asked my doctor if i need chemo, my dr told me that i dont need none of that, what kind of treatment are getting now . 

                                                                 thank you  

My diagnosis came just as I had turned 50 last year. I had the whipple procedure in September 2007. It was considered a stage 2 because it had spread to one lymph node, and to some surrounding fatty tissue.  None of my organs were affected.

The medical oncologist stated since it has spread to one lymph node, even though the margins were clear he was classsifying it as a stage 3 and is treating it aggressively with chemo. I had 3 Cycles of Gemzar, followed by a w week rest. This monday I will start 7 weeks of continuous Chemo of 5FU in conjunction with radiation therapy. Then I have a 7 week rest and he will do more treatment with Gemzar. Everyone is very hopeful with me, but being in the profession I'm the one that is not too hopeful.

Hi, i was just wondering. do you know what is the rate survivale after this kind of surgey and type of cancer. i been kind of searching online and did not find anything since it is rare cancer.

                                                           Thanks

I am a 51 year old male diagnosed with Ampullary Carcinoma of the Ampulla of Vader (4cm tumor). Never had been to the hospital and was in great shape, just started getting some fevers that popped out of nowwhere. The blessing for me was that I turned jaundice and thought I had hepatitis. The attending ER doctor was my god send as he kept testing and was convinced it was something else because of my pancreas enzymes. Turns out the tumor had blocked everything and the fluids were backing up inside. A scope revealed the tumor and 2 days later I had a 3 1/2 hour Whipple procedure at CDH in Winfield, IL performed by a fantastic surgeon who I happened to know before hand. They remove plenty of lymph nodes that tested negative and after further review and a second opinion at Northwestern from the tumor board, I did not need further treatment. The recovery takes a while, but I was golfing 6 - 8 weeks after surgery (not hitting very far and only playing a few holes). You get used to the reduced eating and find the stomach only holds so much so avoid drinking alot of water prior to trying to eat. There are foods like milk and fried foods which definitely will have an effect on you, but in the end you get used to this and end up eating healthier.

 I was told about an 84% chance it will NOT recurr for me, but this type is so rare, you just don't think about it because everyone is different. Attitude is the best medicine and we all know that every day is more precious for us, so enjoy each time you wake up in the morning. I do not take any other medicine other than a vitamin supplement so I am lucky. You never forget the scar is there, but again the alternatives make it all bearable. I hope this gives some insight and positive hope that things can be better in time. I find myself looking at the clouds alot more and not letting the little things in life get so consuming. I still get ticked missing a 3 foot putt as no one should ever let that happen:)

 Good Luck and hope you have a bright future.