I was diagnosed in November of last year. I lost my appetite and lost 15 pounds through the holiday season. Then in March I told my oncologist is this normal and she said NO. A CT scan showed that my tumor not only stopped growing it started shrinking.
I have not been on any therapy, chemo, targeted, immunotherapy absolutely nothing. I do have advanced MS. I was diagnosed in 1984 and my last exacerbation was in 2003. I am rated 100% service connected by the VA.
My wife has an interesting take on the situation. She feels that my hyper MS immune system came roaring back and is attacking the cancer. I think you can put a name on what is happening and that is called Spontaneous Regression of my cancer. I feel like I’ve won the lottery of life. I feel great and another CT scan is in a month.
Rich
I was diagnosed in November after a sample of the tumor was taken during an endoscopy. I lost 15 pounds and was not hungry at all. Then I got my appetite back in late February and started feeling much better. I have advanced MS which has taken its toll on my body. I’m reminded of the saying, “The enemy of my enemy is my friend.” A CT scan early this year showed that the tumor had shrunk a little. My next scan is in two months. If it has shrunk further, then I will get excited.
All medical and surgical options were off the table because of the severity of my MS. My wife thought it was my overactive MS immune system fighting the cancer. I thought se was crazy but my oncologist said she may be correct.
I was diagnosed with Ampullary cancer in November of last year. They placed a stent to free up my bile duct because I started to turn yellow. I lost my appetite shortly after my diagnosis losing 15 through the holidays. Then at the end of the February my appetite came back and I started feeling really good. I asked my oncologist if this was normal and she said, No, it isn’t normal. They did a CT scan and it showed my tumor had shrunk a little.
I need to back up a little and tell you a bit about myself. I’m currently 75 and have been diagnosed with MS in 1984. In 2003 I have a massive exacerbation leaving my paralyzed from my waist down. My left arm does only gross motor control. I catheterize and have a colostomy. I’m rated 100% disabled by the VA SMC R2.
I have heard the term spontaneous regression batted around. I do know that this type of cancer is rare and regression is even rarer. My wife feels that my overactive immune system turned its attention to the cancer. My oncologist is only saying something is going on and is waiting until my next CT scan results. Then I will get excited and post my results. As of today I’m feeling like my normal MS self!
Rich
I don't know because I chose to do all three. I was diagnosed with ampulla of Vater adenocarcinoma in January of 2023, shortly before my 59th birthday. I did my own research and consulted with a specialist at City of Hope and based on what I was hearing I came to the conclusion that my best chance of long-term survival was to have the Whipple procedure performed as soon as possible. I managed to get the surgery done by the end of February 2023. I pushed for the earliest possible date. I had clean margins but significant lymph node involvement. After consulting with my doctors I decided to follow up immediately with chemo (12 rounds of folfirinox) and afterwards radiation. Chemo was awful, radiation not so bad, relatively. It took a year to complete my follow up therapies. It took a while after that before I started feeing myself again. My digestion will never be the same but it's not that bad, really. I started taking Creon to help with digestion. I was always health conscious and in pretty good shape before this happened so it came as quite the surprise. But I had a couple of situations in life that had me extremely stressed for a long time, which I think led up to the cancer. I made a number of changes to reduce my stress levels and now, both physically, and mentally, I feel fantastic. Follow up scans as recently as last weekend have so far been clear. I don't know if, when, or where the cancer will show up again but I am very happy I went through with the surgery, chemo, and radiation. Don't get me wrong. It totally sucked and I had some really hard times getting through it all. But for me, my wife, and my children it was totally worth it.
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?
I don't know because I chose to do all three. I was diagnosed with ampulla of Vater adenocarcinoma in January of 2023, shortly before my 59th birthday. I did my own research and consulted with a specialist at City of Hope and based on what I was hearing I came to the conclusion that my best chance of long-term survival was to have the Whipple procedure performed as soon as possible. I managed to get the surgery done by the end of February 2023. I pushed for the earliest possible date. I had clean margins but significant lymph node involvement. After consulting with my doctors I decided to follow up immediately with chemo (12 rounds of folfirinox) and afterwards radiation. Chemo was awful, radiation not so bad, relatively. It took a year to complete my follow up therapies. It took a while after that before I started feeing myself again. My digestion will never be the same but it's not that bad, really. I started taking Creon to help with digestion. I was always health conscious and in pretty good shape before this happened so it came as quite the surprise. But I had a couple of situations in life that had me extremely stressed for a long time, which I think led up to the cancer. I made a number of changes to reduce my stress levels and now, both physically, and mentally, I feel fantastic. Follow up scans as recently as last weekend have so far been clear. I don't know if, when, or where the cancer will show up again but I am very happy I went through with the surgery, chemo, and radiation. Don't get me wrong. It totally sucked and I had some really hard times getting through it all. But for me, my wife, and my children it was totally worth it.
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.
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I was diagnosed in November of last year. I lost my appetite and lost 15 pounds through the holiday season. Then in March I told my oncologist is this normal and she said NO. A CT scan showed that my tumor not only stopped growing it started shrinking.
I have not been on any therapy, chemo, targeted, immunotherapy absolutely nothing. I do have advanced MS. I was diagnosed in 1984 and my last exacerbation was in 2003. I am rated 100% service connected by the VA.
My wife has an interesting take on the situation. She feels that my hyper MS immune system came roaring back and is attacking the cancer. I think you can put a name on what is happening and that is called Spontaneous Regression of my cancer. I feel like I’ve won the lottery of life. I feel great and another CT scan is in a month.
Rich
I was diagnosed in November after a sample of the tumor was taken during an endoscopy. I lost 15 pounds and was not hungry at all. Then I got my appetite back in late February and started feeling much better. I have advanced MS which has taken its toll on my body. I’m reminded of the saying, “The enemy of my enemy is my friend.” A CT scan early this year showed that the tumor had shrunk a little. My next scan is in two months. If it has shrunk further, then I will get excited.
All medical and surgical options were off the table because of the severity of my MS. My wife thought it was my overactive MS immune system fighting the cancer. I thought se was crazy but my oncologist said she may be correct.
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1 ReactionI was diagnosed with Ampullary cancer in November of last year. They placed a stent to free up my bile duct because I started to turn yellow. I lost my appetite shortly after my diagnosis losing 15 through the holidays. Then at the end of the February my appetite came back and I started feeling really good. I asked my oncologist if this was normal and she said, No, it isn’t normal. They did a CT scan and it showed my tumor had shrunk a little.
I need to back up a little and tell you a bit about myself. I’m currently 75 and have been diagnosed with MS in 1984. In 2003 I have a massive exacerbation leaving my paralyzed from my waist down. My left arm does only gross motor control. I catheterize and have a colostomy. I’m rated 100% disabled by the VA SMC R2.
I have heard the term spontaneous regression batted around. I do know that this type of cancer is rare and regression is even rarer. My wife feels that my overactive immune system turned its attention to the cancer. My oncologist is only saying something is going on and is waiting until my next CT scan results. Then I will get excited and post my results. As of today I’m feeling like my normal MS self!
Rich
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2 Reactions@johnsmith1580, your story is a welcome message of hope. Welcome to the group.
I don't know because I chose to do all three. I was diagnosed with ampulla of Vater adenocarcinoma in January of 2023, shortly before my 59th birthday. I did my own research and consulted with a specialist at City of Hope and based on what I was hearing I came to the conclusion that my best chance of long-term survival was to have the Whipple procedure performed as soon as possible. I managed to get the surgery done by the end of February 2023. I pushed for the earliest possible date. I had clean margins but significant lymph node involvement. After consulting with my doctors I decided to follow up immediately with chemo (12 rounds of folfirinox) and afterwards radiation. Chemo was awful, radiation not so bad, relatively. It took a year to complete my follow up therapies. It took a while after that before I started feeing myself again. My digestion will never be the same but it's not that bad, really. I started taking Creon to help with digestion. I was always health conscious and in pretty good shape before this happened so it came as quite the surprise. But I had a couple of situations in life that had me extremely stressed for a long time, which I think led up to the cancer. I made a number of changes to reduce my stress levels and now, both physically, and mentally, I feel fantastic. Follow up scans as recently as last weekend have so far been clear. I don't know if, when, or where the cancer will show up again but I am very happy I went through with the surgery, chemo, and radiation. Don't get me wrong. It totally sucked and I had some really hard times getting through it all. But for me, my wife, and my children it was totally worth it.
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Like -
Helpful -
Hug
4 Reactions@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
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1 Reaction@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?