CancerCompass message board discussion started by pjpjpj on 1/3/2008 http://www.cancercompass.com/message-board/message/all,19345,0.htm Thu, 24 Jul 2008 00:00:00 GMT Thu, 24 Jul 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My brother age 44 non smoker non drinker was diagnosed with ampullary cancer 2 days before Christmas. He is due for surgery on Jan. 5th at Mass General Hospital. Was wondering what he can expect and what thw family can expect. We are praying it has not spread he has two very small children. Any help would be appreciated.  Thanks pjpjpj Thu, 03 Jan 2008 00:00:00 GMT  On 1/3/2008 pjpjpj wrote:My brother age 44 non smoker non drinker was diagnosed with ampullary cancer 2 days before Christmas. He is due for surgery on Jan. 5th at Mass General Hospital. Was wondering what he can expect and what thw family can expect. We are praying it has not spread he has two very small children. Any help would be appreciated.  ThanksMy father had the Whipple over 6 years ago.  He had incredible complications having had a surgeon that wasn't so experienced but he made us feel like we had to rush in and take care of this...  My mother's  biggest regret is not really researching and traveling, if necessary, to find the best or at least one who has done MANY.   His surgery was botched and he spent 5.5 months in the hospital near death.  Another surgeon went back in and saved him...After the surgery - demand to stay - as long as possible.  Don't let them kick you out right away.  Complications?  Go right back to the emergency so that he's admitted.  Don't mess around and try to be tough.   Consider chemotherapy even if they say it's not necessary, i.e. "they got it all".   My Dad's has metastisized into his bones, spine, and lymphnodes (didn't discover this until 5.5 years later).  He's fighting the big fight now... Pray and love all moments with him and all the family.  I am praying for him now - if you want my e-mail:  --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html-- .God works miracles! Michelle J  - Marina Del Rey, CA Garysdaughter Fri, 04 Jan 2008 00:00:00 GMT  On 1/4/2008 Garysdaughter wrote: On 1/3/2008 pjpjpj wrote:My brother age 44 non smoker non drinker was diagnosed with ampullary cancer 2 days before Christmas. He is due for surgery on Jan. 5th at Mass General Hospital. Was wondering what he can expect and what thw family can expect. We are praying it has not spread he has two very small children. Any help would be appreciated.  ThanksMy father had the Whipple over 6 years ago.  He had incredible complications having had a surgeon that wasn't so experienced but he made us feel like we had to rush in and take care of this...  My mother's  biggest regret is not really researching and traveling, if necessary, to find the best or at least one who has done MANY.   His surgery was botched and he spent 5.5 months in the hospital near death.  Another surgeon went back in and saved him...After the surgery - demand to stay - as long as possible.  Don't let them kick you out right away.  Complications?  Go right back to the emergency so that he's admitted.  Don't mess around and try to be tough.   Consider chemotherapy even if they say it's not necessary, i.e. "they got it all".   My Dad's has metastisized into his bones, spine, and lymphnodes (didn't discover this until 5.5 years later).  He's fighting the big fight now... Pray and love all moments with him and all the family.  I am praying for him now - if you want my e-mail:  comedymill@gmail.com.God works miracles! Michelle Johnson  - Marina Del Rey, CADear Michelle,  Thank-you so much for responding to my message.  I am praying for your Father. I lost my this past July 4th he was diagnosed with lung cancer on June 1st and was gone on the 4th of July. The doctors told us he had about a year we we shocked it happened so quickly .  And now my brother  needless to say we are in shock.    Let me give you a little background about my brother.  The thursday before Christmas he went to see a the dermatologist that his wife works for because of a rash and itch. She took one look at him and called his PC Dr. and tolsd him he had to see him immediately. His PC Dr. sent him right to Er were he was admitted he had 6 blood transfusions in 2 days because of internal bleeding.  We met with 2 surgeons from the local hospital that wanted to perform Wipple surgery they explained it would take 12 hours in surgery.They were considering doing the surgery at the local hospital until he was urged by his wifes sister who is a nurse and his PC that he needed to go into Boston to see the big boys.  They got an appointment with a surgeon who does at least 200 of these operations a yr. We hope he is in good hands he will be operated on tomorrow am at Mass General Hospital in Boston one of the best.  I talked my brother on the phone tonight and will see him before surgery tomorrow in Boston.  He asked me to promise him one thing if he did not make it through surgery.  That I would still see his little girls age 9 and 7. I have a 9 yr old boy myself I cannot even imagine what must be going through his mind.......     I hope I did not make this 2 long.   Once Again,thank-you for responding and give your Dad a big hug... I wish I could hug mine...don't leave anything unsaid..... Time is so short.Pj   --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--    pjpjpj Fri, 04 Jan 2008 00:00:00 GMT PJ, Hopefully you have read the only other recent ampullary cancer posting on this website from London, dated 19 Dec, and my responses to her.  If you have not and cannot, please let me know and I will restate all from those postings.  In short, my 53 yr old wife Sun, had over a week-long diagnosis where the docs repeatedly tried to prove she had gallstones.  Finally opened her up more for exploratory surgery than anything else and wound up doing the 5-hour Whipple procedure on 31 Oct.  Small community hospital with surgeons that still refused to admit they had removed a tumor until testing of it came back positive 2 days later.  Up until that point they said they said it was 'an infected mass' probably caused by gallstones which she must have already passed.  Had I known then what I know not, we would have moved to a cancer center for the operation. She still has complications, including swelling, pain and a puss drainage from a hole they cut in her belly 2 weeks AFTER the surgery after a large puss blister developed.  She's lost 15 lbs since surgery, down to 90 lbs, and having a big problem gaining it back. She has had 4 different follow-on treatment proposals from different oncologists, and finally started chemo 3 days ago following a procedure recommended by the Moffitt Cancer Center in Tampa.  She will take chemo alone for 3 months then switch to another type of chemo with radiation for 5 weeks, then back to her present chemo for the remainder of 6 months.  As I said, if you can't find my previous postings,  let me know and I'll restate to you.  Good luck to you and your brother.  Our prayers are with you. George & Sun C, Cocoa Beach, FL  --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--   Rising Sun Sat, 05 Jan 2008 00:00:00 GMT  Dear PJ!  We have (my parents and I) been praying for your brother and your families!  As soon as you can spare a moment, we'd love to know how he did...  I'm so sorry for the loss of your father.  My Dad is being so courageous - I love him so much!  Our family has suffered multiple tragedies as well.  What inspired me to respond to you was that you were writing about your brother.  My brother was hit head-on by a sleeping elderly woman while on a motorcycle 12 years ago.  While he did miraculously survive, he had his entire left arm and leg amputated and in short has had 35 surgeries and suffers from acute chronic pain and drug dependency.  Our family has rallied around him unimaginably...   I am just reaching out to you and sending love and prayers - be strong!  Stay in touch...Michelle  Garysdaughter Sun, 06 Jan 2008 00:00:00 GMT  On 1/5/2008 Rising Sun wrote:PJ, Hopefully you have read the only other recent ampullary cancer posting on this website from London, dated 19 Dec, and my responses to her.  If you have not and cannot, please let me know and I will restate all from those postings.  In short, my 53 yr old wife Sun, had over a week-long diagnosis where the docs repeatedly tried to prove she had gallstones.  Finally opened her up more for exploratory surgery than anything else and wound up doing the 5-hour Whipple procedure on 31 Oct.  Small community hospital with surgeons that still refused to admit they had removed a tumor until testing of it came back positive 2 days later.  Up until that point they said they said it was 'an infected mass' probably caused by gallstones which she must have already passed.  Had I known then what I know not, we would have moved to a cancer center for the operation. She still has complications, including swelling, pain and a puss drainage from a hole they cut in her belly 2 weeks AFTER the surgery after a large puss blister developed.  She's lost 15 lbs since surgery, down to 90 lbs, and having a big problem gaining it back. She has had 4 different follow-on treatment proposals from different oncologists, and finally started chemo 3 days ago following a procedure recommended by the Moffitt Cancer Center in Tampa.  She will take chemo alone for 3 months then switch to another type of chemo with radiation for 5 weeks, then back to her present chemo for the remainder of 6 months.  As I said, if you can't find my previous postings,  let me know and I'll restate to you.  Good luck to you and your brother.  Our prayers are with you. George & Sun C, Cocoa Beach, FL  --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--    Garysdaughter Sun, 06 Jan 2008 00:00:00 GMT Dear Sun and George, Hang in there!  You can make it through this!  As I mentioned, my Dad was in the hospital for almost 6 months when his Whipple surgery was botched - his entire incision was OPEN about four inches which the caustic bile pouring out of him - I recall at least four drains in addition - Oh god it was awful.  We expected him to die... But he made it!   We've had him around for almost six and a half years since.  I do worry that Sun's internal incision is still leaking - have them continuously run blood tests - I'm assuming she's on massive antibiotics?  Watch for fever spikes.  NEVER hesitate going to the emergency room.  It's the only way to get immediate attention and hospital admittance.  Intervenious antibiotics might save her if a high fever is present - I highly suggest a dietician (spell).  I was quite ill in the past whithering away from not being able to eat many foods.  She helped me gain weight and deal with restrictions.  Also to help immensely with my immune system.Another opinion:  No matter what any western medicine doctor says, if Sun has continued issues with digestion, ENZYMES, ENZYMES, ENZYMES.  My father finally tried some after suffering for I don't know how long - NIGHT and DAY difference.  God be with you both - you are in my prayers. Michelle   Garysdaughter Sun, 06 Jan 2008 00:00:00 GMT  On 1/6/2008 Garysdaughter wrote: Dear PJ!  We have (my parents and I) been praying for your brother and your families!  As soon as you can spare a moment, we'd love to know how he did...  I'm so sorry for the loss of your father.  My Dad is being so courageous - I love him so much!  Our family has suffered multiple tragedies as well.  What inspired me to respond to you was that you were writing about your brother.  My brother was hit head-on by a sleeping elderly woman while on a motorcycle 12 years ago.  While he did miraculously survive, he had his entire left arm and leg amputated and in short has had 35 surgeries and suffers from acute chronic pain and drug dependency.  Our family has rallied around him unimaginably...   I am just reaching out to you and sending love and prayers - be strong!  Stay in touch...Michelle Dear Michelle,Thank-you along with your Mom and Dad for your prayers.  Wow, I am overwhelmed that you have been kind enough to respond to me with all that you have going on.  I cannot even begin to imagine the pain and suffering your brother has gone through . Not to mention the psychological pain for him as well as you and your parents .  I will also remember him in my prayers as well as you and your parents.My brother came through the surgery ok the tumor was much larger than they anticiapted they had to remove more of the pancreas and small bowel than they hoped.  The cancer had spread to the lymph nodes.  They are trying to get him up and moving which he is doing so they .can start him on a very aggresive chemo regimen .The statistics are not good 40% he will live past 5 yrs. he has a great outlook .  He is not aware that it has spread the Dr. did not want him to know this until he has recovered from the surgery.   She felt he needed all his strength to re-coop from this major surgery.  He needed to keep a positive state of mind...... We are praying that he beats those statistics.  He is actually helping us out with his humour and outlook he doesn't want any crying over him just happiness!!! If we could only be so brave in the face of this awful disease they call Cancer!!Once Again thank-you so much for your concern..... it is more appreciated than you will ever know!PJ    pjpjpj Mon, 07 Jan 2008 00:00:00 GMT Hi there - so caught up in the drama here only got back to you now.  Prayers are with you all too...  I've been thrilled that you've responded to me as well.  It's a crazy ride...  The best of EVERYTHING to you and yours. In God's hands...Michelle and Family  Garysdaughter Wed, 16 Jan 2008 00:00:00 GMT 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   gazalymo Sat, 19 Jan 2008 00:00:00 GMT  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   Garysdaughter Tue, 22 Jan 2008 00:00:00 GMT 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  gazalymo Tue, 22 Jan 2008 00:00:00 GMT Thank you!!! And you are in my prayers - lot's of love,Michelle  Garysdaughter Tue, 22 Jan 2008 00:00:00 GMT Hi, Though it is a very rare cancer especially at your age, I would seek a second oppinion on treatment modalities. I would not feel comfortable if I were you not receiving any form of chemotherapy. Gemzar seems to be what they are using these days to treat pancreatic cancer and ampullary cancer. Mine was just confined to the ampulla and one lymph node out of 9, but I'm getting treated aggressively, per choice and physician recommendation. kaffeguy Wed, 23 Jan 2008 00:00:00 GMT 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   gazalymo Fri, 25 Jan 2008 00:00:00 GMT 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. kaffeguy Fri, 25 Jan 2008 00:00:00 GMT  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 gazalymo Sat, 26 Jan 2008 00:00:00 GMT  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. happytobehere Thu, 14 Feb 2008 00:00:00 GMT