Ampulla of Vater

Hi Rachel and welcome to the online community

I'm sorry to read that a member of your family has cancer of the ampulla of vater. It must have come as a tremendous shock to you all.

I don't have any personal experience with this type of cancer to draw on but I noticed that your post hadn't had any replies. I tried to find others with this diagnosis on the community for you but there don't seem to be any recent posts mentioning it.

Although it's not the same as hearing about people's personal experiences could I suggest that you post any questions you have in ask a nurse and one of the specialist cancer nurses will aim to respond within 2 working days.

When you have a minute, it would be really useful if could pop something about your family member's journey so far into your profile as it helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

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HI Rachelapb,

It's along time since you posted, so I would be interested in your experience, hopefully good. Here is  my story so far:

My wife, 81, was diagnosed with ampullary cancer in early October 2020. Her initial symptoms of discomfort indicated diverticulitis and a week's course of antibiotics seemed to fix it, but shortly after, her urine became very dark in colour and her stool a clay colour. At about the same time, her skin took on a yellowish tint and she was losing weight rapidly. Jaundice!

Her doctor immediately referred her to the local GI clinic where they performed an endoscopic ultrasound (EUS)  followed by an endoscopic retrograde cholangeopacreatography (ERCP)  and found two partially blocked bile ducts, one being the Ampulla of Vater. Two stents were inserted and bodily functions and skin colour quickly reverted to normal. No malignancy was found in the biopsy, but the oncological surgeon recommended a Whipple procedure because the masses would probably become malignant if left. We decided to get a second opinion, so went to the Moffitt Cancer Center in Tampa (we live about 60 miles from there). There they also did a ECRP but did find malignancy in the Ampulla. and also recommended Whipple noting that my wife is very fit and cycles 50-75 miles per week on our tandem so should tolerate it . The pathology indicated pT3b N1. We decided to have the surgery done close to home by a surgeon who does about 90 such operations per year. Because of the complexity of the procedure, it's imperative to check the surgeon's experience with it prior to going ahead. This type of cancer is quite rare, being only about 0.2% of gastrointestinal cancers.

My wife was in hospital 12 days, although they told her it would be 5-7. (She was slow to get back onto solid food). She recovered very quickly from the surgery, with minimal discomfort but 10 weeks on, her appetite is only just returning, as was predicted by the doctors. She has, however lost over 30 lb from her original 125 lb. Over the past few days, she has been gaining weight little by little with the help of high calorie and high protein food and drink, when she feels she can stomach them. She is in good spirits and we'll probable do a short tandem ride tomorrow to see how she feels.

On Tuesday, she sees a medical oncologist (I have to be on the end of a phone line because of COVID) to find out what's next for her and the following week we will go back to Moffitt for a second opinion with an oncologist who has  experience with immunology and genetics related to the GI tract and Ampullary cancer in particular.

To be continued......