Subject: Dad has Ampullary cancer
Date: 01/08/2008
I am so scared. My Dad who just turned 77 has lost weight (about 20 pounds since summer) No other symptoms. An incidental CT scan for a kidney stone revealed lung nodules. Further testing has showed a tumor on the ampulla. The biopsy came back neither malignant nor benign, "suspicious" is what they call it. They are doing another one tomorrow when he has a PTC done (He has now turned yellow, but still no pain) The oncologist we saw today believes that the lung nodules are mets from the ampulla tumor. He also said the liver is probably involved because the cancer typically goes ampulla, liver, lungs. This makes him inelligible for surgery. I really need an experienced opinion. Should we try chemo? Can anyone tell me their story? Should we try a clinical trial? We have not been given the prognosis yet. I am afraid to hear it, yet I want to know. If anyone is willing to advise me I sure would appreciate it.
Subject: RE: Dad has Ampullary cancer
Date: 01/16/2008
Hi there, my name is Michelle and my Dad also has Ampullary Cancer. First - see what the diagnosis is and then GET A SECOND OPINION!!!!! Even a third...Go to oncologists who have seen this kind of cancer before! Get the most experienced one in your area - don't be pressured to just stick with that doctor and rush into surgery/treatment... Yes, be diligent, but don't be uninformed. We have yet to find ANY clinical trials for Ampullary (as the primary) Cancer. It is rare and usually is so advanced when discovered that it's considered Pancreatic. My father had a "Whipple" procedure 6 years ago. It's metasticized now and he's into heavy chemotherapy fighting a good fight. My prayers go out to you and your family. The best advise I can give (mother's an RN) get the BEST in your area. Don't trust just because they're nice or they said they're the best in the area... You can help by researching extensively for him - that's what I do for my Dad. Also, look to God for strength and say everything you want to say to your Dad. Live with no regrets. God Bless, Michelle
Subject: RE: Dad has Ampullary cancer
Date: 01/17/2008
Thanks Michelle, I will take your advice and seek another opinion. Will they have to re-do all the tests? (CT scans, blood work and so on?)
Subject: RE: Dad has Ampullary cancer
Date: 01/18/2008
They most likely won't repeat tests but will want copies of everything. Usually sent ahead of time too. You can help him by keeping everything organized and even keep sort of a journal of who he saw when, what tests, etc.. We had my Dad's biopsy material sent to three different reputable cancer testing centers in the country to try and figure out exactly what cancer this started out as... I can tell you that it is amazing how in charge of your own care you must be. Be aggressive - ask many questions. Have the doctors be specific "yeah I've seen Ampullary Cancer" Oh yeah? How many cases have you worked on specifically? Hope this helps - lots of love, Michelle
Subject: RE: Dad has Ampullary cancer
Date: 01/19/2008
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
Subject: RE: Dad has Ampullary cancer
Date: 02/16/2008
On 1/8/2008 edsdaughter wrote:
I am so scared. My Dad who just turned 77 has lost weight (about 20 pounds since summer) No other symptoms. An incidental CT scan for a kidney stone revealed lung nodules. Further testing has showed a tumor on the ampulla. The biopsy came back neither malignant nor benign, "suspicious" is what they call it. They are doing another one tomorrow when he has a PTC done (He has now turned yellow, but still no pain) The oncologist we saw today believes that the lung nodules are mets from the ampulla tumor. He also said the liver is probably involved because the cancer typically goes ampulla, liver, lungs. This makes him inelligible for surgery. I really need an experienced opinion. Should we try chemo? Can anyone tell me their story? Should we try a clinical trial? We have not been given the prognosis yet. I am afraid to hear it, yet I want to know. If anyone is willing to advise me I sure would appreciate it.
My mom fought ampullary cancer after having the whipple in November of 2005. She had small cell cancer in the ampulla, so they treated the small cell cancer, instead of treating ampullary cancer.Small cell cancer is very agressive, but responds well to treatment. She did just pass away, but she lived almost 2 years because of chemo. Do the chemo, it worked for a while, putting my mom in a full remission for awhile. She lived to go to my daughters' wedding, and so we could enjoy her for a while longer. The chemo that worked for her was called irinotecan. It is not that bad of a chemo as far as side effects go. I am just telling you because I have just gone through all of this, my mom was only 72, just passed away, I miss her, and thought I could help someone else. Yes, do the chemo!
Subject: RE: Dad has Ampullary cancer
Date: 02/16/2008
On 2/16/2008 Denise3278 wrote: On 1/8/2008 edsdaughter wrote:
I am so scared. My Dad who just turned 77 has lost weight (about 20 pounds since summer) No other symptoms. An incidental CT scan for a kidney stone revealed lung nodules. Further testing has showed a tumor on the ampulla. The biopsy came back neither malignant nor benign, "suspicious" is what they call it. They are doing another one tomorrow when he has a PTC done (He has now turned yellow, but still no pain) The oncologist we saw today believes that the lung nodules are mets from the ampulla tumor. He also said the liver is probably involved because the cancer typically goes ampulla, liver, lungs. This makes him inelligible for surgery. I really need an experienced opinion. Should we try chemo? Can anyone tell me their story? Should we try a clinical trial? We have not been given the prognosis yet. I am afraid to hear it, yet I want to know. If anyone is willing to advise me I sure would appreciate it.
My mom fought ampullary cancer after having the whipple in November of 2005. She had small cell cancer in the ampulla, so they treated the small cell cancer, instead of treating ampullary cancer.Small cell cancer is very agressive, but responds well to treatment. She did just pass away, but she lived almost 2 years because of chemo. Do the chemo, it worked for a while, putting my mom in a full remission for awhile. She lived to go to my daughters' wedding, and so we could enjoy her for a while longer. The chemo that worked for her was called irinotecan. It is not that bad of a chemo as far as side effects go. I am just telling you because I have just gone through all of this, my mom was only 72, just passed away, I miss her, and thought I could help someone else. Yes, do the chemo!
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