Hi guys. I was just reading about your experiences with ampullary cancer. I am a 51 year old female who was diagnosed in 2020 with ampullary cancer. Mine was also caught very early however, I decided to undergo chemo after my whipple. The actual whipple procedure has changed me for the worst unfortunately. Since the whipple I have severe nausea and diarrhea daily. I'm being aggressively medicated for those symptoms and work with a dieticians. My cancer seems to be gone thank goodness but I just have never recovered from my whipple. Anyone else?
Hi guys. I was just reading about your experiences with ampullary cancer. I am a 51 year old female who was diagnosed in 2020 with ampullary cancer. Mine was also caught very early however, I decided to undergo chemo after my whipple. The actual whipple procedure has changed me for the worst unfortunately. Since the whipple I have severe nausea and diarrhea daily. I'm being aggressively medicated for those symptoms and work with a dieticians. My cancer seems to be gone thank goodness but I just have never recovered from my whipple. Anyone else?
Hi April. Sorry to hear you have side effects from the surgery. I am 67 yo, currently 7 weeks post Whipple. Still recovering but doing not too bad although it is a slow process. I’m in the process of trying to decide if I take chemo or not. I was caught early with negative margin and nodes.
What are your thoughts on the chemo, how long post op did you start treatment? What chemo drugs did you have? Did you have side effects?
Thanks for your help.
Mary Lynn
Hi April. Sorry to hear you have side effects from the surgery. I am 67 yo, currently 7 weeks post Whipple. Still recovering but doing not too bad although it is a slow process. I’m in the process of trying to decide if I take chemo or not. I was caught early with negative margin and nodes.
What are your thoughts on the chemo, how long post op did you start treatment? What chemo drugs did you have? Did you have side effects?
Thanks for your help.
Mary Lynn
It was supposed to be 4 weeks after chemo but I was re admitted to hospital 3 times due to complications from whipple. So about 3 months after my whipple I started chemo. For my chemo treatment I was given folfox and nulasta. I chose to do the chemo because ampullary cancer is very rare and there is just not enough data about what causes it or too much known about the reoccurrence rate so I did it as a "just in case"
Thanks for the info. My surgery was an open method, it was pretty extensive but I’m recovering. Interesting about the pain you describe, I haven’t had that but good to know about it.
Too bad we don’t have more resources or other people like us but I guess we are the lucky ones, caught early, most aren’t.
Yes, we are so very lucky. I’m thankful for all of the physicians that got me to where I am now. Hoping that you don’t experience the phantom pains. They are so infrequent for me now that I almost never think about them.
Take good care of yourself and don’t feel that you have to rush recovery. Eating several small meals rather than the usual three also helped me.
Hi April. Sorry to hear you have side effects from the surgery. I am 67 yo, currently 7 weeks post Whipple. Still recovering but doing not too bad although it is a slow process. I’m in the process of trying to decide if I take chemo or not. I was caught early with negative margin and nodes.
What are your thoughts on the chemo, how long post op did you start treatment? What chemo drugs did you have? Did you have side effects?
Thanks for your help.
Mary Lynn
I also forgot to mention that the chemo was rough. It's a personal choice I made at the time to feel a better but honestly I would not not choose chemo again unless absolutely necessary. Just saying.
Hi guys. I was just reading about your experiences with ampullary cancer. I am a 51 year old female who was diagnosed in 2020 with ampullary cancer. Mine was also caught very early however, I decided to undergo chemo after my whipple. The actual whipple procedure has changed me for the worst unfortunately. Since the whipple I have severe nausea and diarrhea daily. I'm being aggressively medicated for those symptoms and work with a dieticians. My cancer seems to be gone thank goodness but I just have never recovered from my whipple. Anyone else?
Hello, April. I am so sorry to learn that continue to have issues since your Whipple. I do hope that you get better and that diet will help that.
Mary Lynn and April, since we are sharing info - I was 62 when I had my Whipple and was in the hospital a week. I was readmitted the following week due to an infection and had a drain inserted. That stay was another four days. The drain was removed about three weeks later.
Since my Whipple, I had a laminectomy in May 2023. A tumor was found to have grown into my spinal chord at T-11/T-12. I reside in Charlotte, NC but had this surgery at Duke University Hospital in Durham, NC.
In November 2022, I began to have the sensation that my right foot was asleep but I still had feeling in the foot. It gradually included my left foot and prior to surgery had crept up my right leg.
By the time of my surgery, I was using a cane as my balance was much affected and had lost much strength in my legs. I was really concerned that I would ultimately be in a wheelchair.
There were several MRIs done to determine if any other tumors had formed in any other part of my back or brain. The concern was that the ampullary carcinoma had metastasized to those areas.
Fortunately there were no other tumors and the one removed was benign. The “asleep” sensation was gone almost immediately after surgery. I just had my one year follow up and I would say that I am 95% back to normal. I still have some minor balance issues as well as loss of strength in my legs. I walk without a cane and can do most anything I could do before except play tennis. My affected balance is a concern for the potential to fall and that would not be good for the back. I’ve resigned myself that I may never play tennis again but that is a minor loss in the scheme of things.
I share all of this to let you know how long it has been since my Whipple and how well I’ve been since. Also so you know there was another major surgery but it was not related to the ampullary carcinoma.
Hello, April. I am so sorry to learn that continue to have issues since your Whipple. I do hope that you get better and that diet will help that.
Mary Lynn and April, since we are sharing info - I was 62 when I had my Whipple and was in the hospital a week. I was readmitted the following week due to an infection and had a drain inserted. That stay was another four days. The drain was removed about three weeks later.
Since my Whipple, I had a laminectomy in May 2023. A tumor was found to have grown into my spinal chord at T-11/T-12. I reside in Charlotte, NC but had this surgery at Duke University Hospital in Durham, NC.
In November 2022, I began to have the sensation that my right foot was asleep but I still had feeling in the foot. It gradually included my left foot and prior to surgery had crept up my right leg.
By the time of my surgery, I was using a cane as my balance was much affected and had lost much strength in my legs. I was really concerned that I would ultimately be in a wheelchair.
There were several MRIs done to determine if any other tumors had formed in any other part of my back or brain. The concern was that the ampullary carcinoma had metastasized to those areas.
Fortunately there were no other tumors and the one removed was benign. The “asleep” sensation was gone almost immediately after surgery. I just had my one year follow up and I would say that I am 95% back to normal. I still have some minor balance issues as well as loss of strength in my legs. I walk without a cane and can do most anything I could do before except play tennis. My affected balance is a concern for the potential to fall and that would not be good for the back. I’ve resigned myself that I may never play tennis again but that is a minor loss in the scheme of things.
I share all of this to let you know how long it has been since my Whipple and how well I’ve been since. Also so you know there was another major surgery but it was not related to the ampullary carcinoma.
Sorry to hear you had other troubles. But glad it was benign. I’m sure once we have the cancer diagnosis we’ll assume it’s returned with subsequent illnesses. It’s like joining a club of many other cancer victims.
Thanks for sharing.
Mary Lynn
My brother was diagnosed with Ampullary cancer, he is 56. He has made the decision to not have it treated. He did get as far as getting a stent placed, so for now his body is functioning again. Can anyone tell me what can or could happen if he does not have the whiple surgery, chemo or radiation?
Hello, April. I am so sorry to learn that continue to have issues since your Whipple. I do hope that you get better and that diet will help that.
Mary Lynn and April, since we are sharing info - I was 62 when I had my Whipple and was in the hospital a week. I was readmitted the following week due to an infection and had a drain inserted. That stay was another four days. The drain was removed about three weeks later.
Since my Whipple, I had a laminectomy in May 2023. A tumor was found to have grown into my spinal chord at T-11/T-12. I reside in Charlotte, NC but had this surgery at Duke University Hospital in Durham, NC.
In November 2022, I began to have the sensation that my right foot was asleep but I still had feeling in the foot. It gradually included my left foot and prior to surgery had crept up my right leg.
By the time of my surgery, I was using a cane as my balance was much affected and had lost much strength in my legs. I was really concerned that I would ultimately be in a wheelchair.
There were several MRIs done to determine if any other tumors had formed in any other part of my back or brain. The concern was that the ampullary carcinoma had metastasized to those areas.
Fortunately there were no other tumors and the one removed was benign. The “asleep” sensation was gone almost immediately after surgery. I just had my one year follow up and I would say that I am 95% back to normal. I still have some minor balance issues as well as loss of strength in my legs. I walk without a cane and can do most anything I could do before except play tennis. My affected balance is a concern for the potential to fall and that would not be good for the back. I’ve resigned myself that I may never play tennis again but that is a minor loss in the scheme of things.
I share all of this to let you know how long it has been since my Whipple and how well I’ve been since. Also so you know there was another major surgery but it was not related to the ampullary carcinoma.
Hi. Just wondering if you underwent chemo and for how long. One doc wants to keep my friend on forever and another doc says that's not necessary. She is so confused.
Thank you.
My brother was diagnosed with Ampullary cancer, he is 56. He has made the decision to not have it treated. He did get as far as getting a stent placed, so for now his body is functioning again. Can anyone tell me what can or could happen if he does not have the whiple surgery, chemo or radiation?
Simple Summary
Ampullary adenocarcinoma is a rare tumor in the gastrointestinal tract. Surgery is the preferred treatment, however if a patient has other medical conditions or advanced disease, surgery may not be possible. In this situation, the best treatment strategy is unknown. We sought to find out what happens to these patients in terms of treatments and survival. We used the National Cancer Database 2004–2017 to find 2176 patients who were diagnosed with ampullary adenocarcinoma but did not undergo surgery. The majority of these patients did not receive any chemotherapy or radiation. The rest received a combination of chemotherapy, palliative radiation, and/or definitive radiation. One-year overall survival ranged from 35% in patients who only received palliative radiation to 59.4% in patients who received chemotherapy and definitive radiation therapy. We did not find a significant difference in survival between patients who received chemotherapy and those who received chemotherapy and definitive radiation therapy.
Abstract
Surgical resection is the standard of care for ampullary adenocarcinoma (AC). Many patients are ineligible due to comorbidities/advanced disease. Evidence for the optimal non-operative management of localized AC is lacking. We hypothesize that patients treated with chemotherapy (CT) and definitive radiation (DRT) will have superior survival (OS) compared to those treated with CT alone. We performed a retrospective review of the National Cancer Database from 2004 to 2017 to identify patients with non-metastatic AC and no surgical intervention. Patients were categorized as having received no treatment, palliative radiotherapy (PRT) alone, CT alone, CT + PRT, DRT alone, or CT + DRT. We utilized Kaplan–Meier analysis to determine OS and the log-rank test to compare survival curves. Among 2176 patients, treatment groups were: No treatment (71.2%), PRT alone (1.9%), CT alone (13.1%), CT + PRT (1.6%), DRT alone (2.4%), and CT + DRT (9.7%). One-year OS varied by treatment group, ranging from 35.1% (PRT alone) to 59.4% (CT + DRT). The one-year OS in a matched cohort was not significantly different between CT alone and CT + DRT (HR 0.87, 95% CI 0.69–1.10, p = 0.87). Most patients with non-metastatic AC not treated with surgery do not receive any treatment. There is no difference in one-year OS between those undergoing CT alone and CT + DRT.
Connect
Connect
Like
Helpful
Hug
Hi guys. I was just reading about your experiences with ampullary cancer. I am a 51 year old female who was diagnosed in 2020 with ampullary cancer. Mine was also caught very early however, I decided to undergo chemo after my whipple. The actual whipple procedure has changed me for the worst unfortunately. Since the whipple I have severe nausea and diarrhea daily. I'm being aggressively medicated for those symptoms and work with a dieticians. My cancer seems to be gone thank goodness but I just have never recovered from my whipple. Anyone else?
-
Like -
Helpful -
Hug
1 ReactionHi April. Sorry to hear you have side effects from the surgery. I am 67 yo, currently 7 weeks post Whipple. Still recovering but doing not too bad although it is a slow process. I’m in the process of trying to decide if I take chemo or not. I was caught early with negative margin and nodes.
What are your thoughts on the chemo, how long post op did you start treatment? What chemo drugs did you have? Did you have side effects?
Thanks for your help.
Mary Lynn
-
Like -
Helpful -
Hug
1 ReactionIt was supposed to be 4 weeks after chemo but I was re admitted to hospital 3 times due to complications from whipple. So about 3 months after my whipple I started chemo. For my chemo treatment I was given folfox and nulasta. I chose to do the chemo because ampullary cancer is very rare and there is just not enough data about what causes it or too much known about the reoccurrence rate so I did it as a "just in case"
Yes, we are so very lucky. I’m thankful for all of the physicians that got me to where I am now. Hoping that you don’t experience the phantom pains. They are so infrequent for me now that I almost never think about them.
Take good care of yourself and don’t feel that you have to rush recovery. Eating several small meals rather than the usual three also helped me.
Keep in touch and let me know how you are doing.
I also forgot to mention that the chemo was rough. It's a personal choice I made at the time to feel a better but honestly I would not not choose chemo again unless absolutely necessary. Just saying.
Hello, April. I am so sorry to learn that continue to have issues since your Whipple. I do hope that you get better and that diet will help that.
Mary Lynn and April, since we are sharing info - I was 62 when I had my Whipple and was in the hospital a week. I was readmitted the following week due to an infection and had a drain inserted. That stay was another four days. The drain was removed about three weeks later.
Since my Whipple, I had a laminectomy in May 2023. A tumor was found to have grown into my spinal chord at T-11/T-12. I reside in Charlotte, NC but had this surgery at Duke University Hospital in Durham, NC.
In November 2022, I began to have the sensation that my right foot was asleep but I still had feeling in the foot. It gradually included my left foot and prior to surgery had crept up my right leg.
By the time of my surgery, I was using a cane as my balance was much affected and had lost much strength in my legs. I was really concerned that I would ultimately be in a wheelchair.
There were several MRIs done to determine if any other tumors had formed in any other part of my back or brain. The concern was that the ampullary carcinoma had metastasized to those areas.
Fortunately there were no other tumors and the one removed was benign. The “asleep” sensation was gone almost immediately after surgery. I just had my one year follow up and I would say that I am 95% back to normal. I still have some minor balance issues as well as loss of strength in my legs. I walk without a cane and can do most anything I could do before except play tennis. My affected balance is a concern for the potential to fall and that would not be good for the back. I’ve resigned myself that I may never play tennis again but that is a minor loss in the scheme of things.
I share all of this to let you know how long it has been since my Whipple and how well I’ve been since. Also so you know there was another major surgery but it was not related to the ampullary carcinoma.
-
Like -
Helpful -
Hug
2 ReactionsSorry to hear you had other troubles. But glad it was benign. I’m sure once we have the cancer diagnosis we’ll assume it’s returned with subsequent illnesses. It’s like joining a club of many other cancer victims.
Thanks for sharing.
Mary Lynn
My brother was diagnosed with Ampullary cancer, he is 56. He has made the decision to not have it treated. He did get as far as getting a stent placed, so for now his body is functioning again. Can anyone tell me what can or could happen if he does not have the whiple surgery, chemo or radiation?
-
Like -
Helpful -
Hug
1 ReactionHi. Just wondering if you underwent chemo and for how long. One doc wants to keep my friend on forever and another doc says that's not necessary. She is so confused.
Thank you.
Simple Summary
Ampullary adenocarcinoma is a rare tumor in the gastrointestinal tract. Surgery is the preferred treatment, however if a patient has other medical conditions or advanced disease, surgery may not be possible. In this situation, the best treatment strategy is unknown. We sought to find out what happens to these patients in terms of treatments and survival. We used the National Cancer Database 2004–2017 to find 2176 patients who were diagnosed with ampullary adenocarcinoma but did not undergo surgery. The majority of these patients did not receive any chemotherapy or radiation. The rest received a combination of chemotherapy, palliative radiation, and/or definitive radiation. One-year overall survival ranged from 35% in patients who only received palliative radiation to 59.4% in patients who received chemotherapy and definitive radiation therapy. We did not find a significant difference in survival between patients who received chemotherapy and those who received chemotherapy and definitive radiation therapy.
Abstract
Surgical resection is the standard of care for ampullary adenocarcinoma (AC). Many patients are ineligible due to comorbidities/advanced disease. Evidence for the optimal non-operative management of localized AC is lacking. We hypothesize that patients treated with chemotherapy (CT) and definitive radiation (DRT) will have superior survival (OS) compared to those treated with CT alone. We performed a retrospective review of the National Cancer Database from 2004 to 2017 to identify patients with non-metastatic AC and no surgical intervention. Patients were categorized as having received no treatment, palliative radiotherapy (PRT) alone, CT alone, CT + PRT, DRT alone, or CT + DRT. We utilized Kaplan–Meier analysis to determine OS and the log-rank test to compare survival curves. Among 2176 patients, treatment groups were: No treatment (71.2%), PRT alone (1.9%), CT alone (13.1%), CT + PRT (1.6%), DRT alone (2.4%), and CT + DRT (9.7%). One-year OS varied by treatment group, ranging from 35.1% (PRT alone) to 59.4% (CT + DRT). The one-year OS in a matched cohort was not significantly different between CT alone and CT + DRT (HR 0.87, 95% CI 0.69–1.10, p = 0.87). Most patients with non-metastatic AC not treated with surgery do not receive any treatment. There is no difference in one-year OS between those undergoing CT alone and CT + DRT.