Ampullary cancer: What are the chances of surviving?

Hi @micamica69, ampullary cancer, or ampullary carcinoma, is a form of cancer that forms in a body part called the ampulla of Vater. It is quite rare, especially in someone as young as 29.

Often surgery is recommend for this type of cancer. The surgery called Whipple procedure (pancreaticoduodenectomy) can greatly increase the chances of surviving this cancer.

Have you been diagnosed with this cancer or are you asking on behalf of a friend or family member? Has surgery been suggested?

Hello. I had ampullary carcinoma in 2016 and a Whipple procedure was performed. I did not undergo chemotherapy nor radiation as my surgeon and his colleagues consulted and told me that the cancer was not invasive. The cancer had not spread to any of the lymph nodes that were removed and studied.

@micamica69, just checking in to see how you are doing. I also hope that you have seen the helpful post from @mdmnc who also had ampullary carcinoma back in 2016 and is here to tell you about it.

Micamica, how are you doing? What treatments did you or are you having?

Hi I am 45-year-old female, recently diagnosed with Ampullary cancer. I live in NYC any recommendations for where to perform the whipple procedure in NY or any other state.
Thanks

@kabam7775, where did you decide to get surgery? How are you doing?

I have recently been diagnosed with ampullary adenocarcinoma. Had Whipple procedure about 6 weeks ago. It was caught early with negative margins and nodes. Now I’m trying to decide do I have chemo or not? Your situation sounds similar. I wonder how you are doing and what influenced your decision not to have chemo?
ML

ML, I am doing well. Like you I had clear margins and all lymph nodes were negative. My surgeon and his colleagues conferred about my case and recommended no chemo and/or radiation. I went along with the surgeons’ recommendation. At one year post surgery a new CT scan was done and my surgeon told me that everything still looked very good, that I was cancer free and he did not need to see me anymore.

I was back playing tennis after 8 months. I never had any trouble going back to eating everything that I had eaten prior to surgery.

I hope your recovery continues to go well.
Please feel free to ask for any additional info you may want.

Glad to hear you are doing well. You mentioned you are able to eat everything, that is great. I am starting to eat pretty good but only because I take pancreatic enzymes. I’m starting to feel more normal but not 100% yet, hopefully I’ll improve more in the next few weeks.
Do you know others in our situation?
ML

ML, I’m glad to hear that you are starting to eat better but sorry that you have to take enzymes. I don’t know anyone who has been through this same surgery so I just tried to find things on the internet about it.

I can tell you that I continue to have phantom pains in the area of my diaphragm periodically. They were very painful when I initially would have them and luckily they only lasted a couple of minutes. So painful that I would cry. Now I have them infrequently and I can feel when they are coming on. I use the Lamaze breathing technique and they pass in less than a minute. I can go weeks without them and then sometimes I will have three in a day. I’ve read about other people having these and some last much longer but there doesn’t seem to be an answer as to what causes them.

Was your surgery done laparoscopically? My surgery was done that way. It did take me about 8 months before I felt comfortable and strong enough to try getting back on a tennis court.
I hope you continue to improve and get to where you feel like yourself soon. It does take awhile but you will get there.

One other thing. I did have two infusion sessions to get to where I wasn’t so fatigued. My ferritin was low and the infusions helped a lot.

Take good care of yourself and you may reach out to me any time for whatever.

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.