My 44 Yr. Old Brother

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

 

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.  Thanks

My 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: 

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God works miracles!

 Michelle J  - Marina Del Rey, CA

 

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.  Thanks

My 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, CA

Dear 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  

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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 

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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 

 

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 

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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

 

 

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 

 

 

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 

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