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.
@minpin3165, it is hard when a patient gets differing opinions from experts. Sometimes chemotherapy may be used as a "maintenance" therapy (forever), usually for advanced cancers.
Do you know what stage your friend's cancer is? What did she decide?
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?
@dijones, I can understand your wanting to know what to expect as cancer progresses without treatment. This is best answered by your brother's cancer team who know the status of his tumor (stage), overall health status and possible co-conditions.
Do you know what stage of ampullary cancer your brother has? Does he have a palliative care team to keep him comfortable?
Thanks to the dedicated skillful medical team and early discovery of the ampullary cancer, I had successful Whipple Procedure 5 years ago. I will soon be 87, relatively in good condition, with no major health issues to speak of. Due to my advanced age I did not get chemotherapy, judging from the results probably did not need it. Few days after the Whipple, I was up on my feet, diligently walking a few times a day in the hospital corridors. I was surprised how well I did, because 18 years ago I had a quadruple coronary bypass operation and following that for couple of weeks if I may say, I was sick as a dog. My last blood test and CT scan in January and 6 months intervals before that were excellent, no trace of recurrence. If I may add I am physically active, try to eat wholesome food, less meat, more vegetables, and strictly one meal daily which is only a generous serving of 3-4 kinds of in season fruits only.
@survivorcan, I love your username. It certainly matches your message of healing and hope.
You mention that your cancer was discovered early. What led to the ampulaary cancer being found? Were you having symptoms?
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.
Thanks to the dedicated skillful medical team and early discovery of the ampullary cancer, I had successful Whipple Procedure 5 years ago. I will soon be 87, relatively in good condition, with no major health issues to speak of. Due to my advanced age I did not get chemotherapy, judging from the results probably did not need it. Few days after the Whipple, I was up on my feet, diligently walking a few times a day in the hospital corridors. I was surprised how well I did, because 18 years ago I had a quadruple coronary bypass operation and following that for couple of weeks if I may say, I was sick as a dog. My last blood test and CT scan in January and 6 months intervals before that were excellent, no trace of recurrence. If I may add I am physically active, try to eat wholesome food, less meat, more vegetables, and strictly one meal daily which is only a generous serving of 3-4 kinds of in season fruits only.
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.
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?
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
@minpin3165, it is hard when a patient gets differing opinions from experts. Sometimes chemotherapy may be used as a "maintenance" therapy (forever), usually for advanced cancers.
Do you know what stage your friend's cancer is? What did she decide?
@dijones, I can understand your wanting to know what to expect as cancer progresses without treatment. This is best answered by your brother's cancer team who know the status of his tumor (stage), overall health status and possible co-conditions.
Do you know what stage of ampullary cancer your brother has? Does he have a palliative care team to keep him comfortable?
Colleen,
I was diagnosed in Nov. of last year. I had a stent placed early this year to open my bile duct.
Rich
@survivorcan, I love your username. It certainly matches your message of healing and hope.
You mention that your cancer was discovered early. What led to the ampulaary cancer being found? Were you having symptoms?
Hi @richjh, I see that you posted an excerpt from this journal article:
- Treatment Patterns and Outcomes for Patients with Ampullary Carcinoma Who Do Not Undergo Surgery https://pmc.ncbi.nlm.nih.gov/articles/PMC10378072/
Have you been diagnosed with ampullary adenocarcinoma? What treatment(s) did you have?
Thanks to the dedicated skillful medical team and early discovery of the ampullary cancer, I had successful Whipple Procedure 5 years ago. I will soon be 87, relatively in good condition, with no major health issues to speak of. Due to my advanced age I did not get chemotherapy, judging from the results probably did not need it. Few days after the Whipple, I was up on my feet, diligently walking a few times a day in the hospital corridors. I was surprised how well I did, because 18 years ago I had a quadruple coronary bypass operation and following that for couple of weeks if I may say, I was sick as a dog. My last blood test and CT scan in January and 6 months intervals before that were excellent, no trace of recurrence. If I may add I am physically active, try to eat wholesome food, less meat, more vegetables, and strictly one meal daily which is only a generous serving of 3-4 kinds of in season fruits only.
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.
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?
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