Looking for info on my rare cancer

[drschwartz]

Hi there everyone. I've been diagnosed with ampullary cancer, ie, dealing with the Ampulla of Vater which is where the bile duct enters the pancreas/small intestine (I'm not actually sure what the anatomy looks like in detail).

Unfortunately, I see no fora for either this or bile duct cancer. Is there another community that would be more suitable to my needs? I appreciate your help!

[R1100S1]

Facebook group UK Whipple Warriors has a few of us with experience of ampullary cancer.

We are quite rare so most tag along with pancreatic cancer groups and websites

Had my Whipple in November 2019 and now on Gemcitabine chemotherapy

Good luck and keep positive

X

[Hillary210]

I had that. I live in the US... had a Whipple in 2018. Cancer free after Xeloda for 6 months. All good so far.

[drschwartz in reply to Hillary210]

Hi Hillary210. Can you tell me about your condition? I'm curious about how Whipple procedures vary with patient condition. Are some whipples more extreme than others, ie, they take more organ tissue? My cancer appears to be quite contained. No lymph involvement. How minimal a procedure might I have? Can you tell me about your recovery?

Thanks so much in advance. I'm going crazy with what I don't know. I have my first surgical and oncology consults on Tuesday.

[Hillary210 in reply to drschwartz]

My condition is good. Cancer free. Being checked every three months (CT and labs). I did have a lymph involvement they found during surg... next to the ampulla. That’s why I was placed on adjunct chemo. I work full time and did not skip a beat. I work for a major hospital system here (US) as a Director in the corporate world. I’m very busy, so this was a bit of a slow down. But I’ve been running ever since. I had the whole Whipple instead of the partial.

[ECweb in reply to drschwartz]

Be very selective with your surgeon. I was fortunate to have a surgeon that does hundreds of Whipple procedures a year. I had pyloris preserving whipple, which didn’t involve removing part of my stomach. I was home in 4 days after surgery. Try to gain some weight before surgery with a high protein diet. Gaining weight post op has been a challenge for me.

My best advice post op is to get up and walk the hospital halls as soon as you can. It really helps speed recovery.

I had clear margins with no lymph involvement so I didn’t do chemo.

Ampullary cancer is rare, therefore research is minimal. Keep your thoughts positive.