Ampullary adenocarcinoma bile duct cancer

Hi Amazing Grace welcome to the forum and I am sorry to hear your news.

I am wondering if this is, as you say, a rare type of Cancer and to make sure that you get some response I wondered if you might like to post in the Ask a Nurse thread on this site as they may be able to give you more information.

I have inserted the link direct to this below and you and you need only click it to take you straight to this.

Ask a Nurse thread.

Hope that you manage to get some answers to your query. xxx

Thank you for your reply. I am finding support on fb group, but am looking at all options. I know MacMillan has  Great support groups and was hoping to find one here. 

Hi Amazing Grace,

I just responded to a 2-year -old post under Ampullary Cancer, so this a copy of that, which I hope you might find useful

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, Florida (we live about 60 miles from there). There they also did a full body CT scan and 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.......

Thank you for your reoly.I Pray your wife's recovery continues to go well and any future treatment she has is a complete success. My Mom has decided against the surgery as she has several medical issues working against her and doesn't want to spend her last days suffering from such an intrusive surgery. We support her in any decision she makes and plan on making many happy memories together. Her Dr. said she is in the very early stages and he can insert stints to help everything flow. 

May God continue to Bless you and your Wife with good health. 

HI Amazing Grace,

Thank you for your kind wishes. I hope your Mom (are you also in the USA?) improves. I'm sure the stents will help as they did for my wife prior to surgery.

We have discussed with two oncologists what the next step should be and both recommend Xeloda. We will make our decision in two weeks as to whether to go with that or do active surveillance with a three-monthly CT scan.

Hi Mclean57, My Mom has decided to go forward with the Whipple surgery. She had an echo cardiogram done and it was very good. She also has seen her Kidney Specialist, who she trust to give her an honest opinion and he told her he felt she was healthy enough to have the surgery. I am still very concerned as she does not do well with nausea or pain. It is her decision, so we are supporting her 100%. 

We did see an oncologist and he said she shouldn't need chemo afterwards. From everything I've read most need chemo after surgery, 

We live in SC and the Surgeon we found does 50 Whipples a year. She is too old to travel home after surgery so we are going local. He is scheduled 3 wks out, so it will be February before she has her surgery. 

If you would like, I'll update you after surgery. Please say a prayer for her and Continued prayers for your wife.

God Bless you Both, Theresa

Hi Amazing Grace,

I'm pleased to see your Mom is going ahead with the Whipple procedure. It is a big operation, taking about 3 hours, but if she has anything like my wife's experience, she had very little discomfort afterwards, although she did have an epidural for the time she was in the hospital. It was a large incision, about 12 inches across her stomach then sealed by staples. Even removal of the staples about three weeks later was painless.

She did have a little nausea and bloating at first, but they gave her meds to stop it.

At home, she could eat only small portions at a time, as the dietician warned us, but after several weeks began to eat more and more as her appetite returned. A problem we encountered as she began to eat more was a need to immediately after a meal dash to the bathroom. The food was not being digested and passing straight through, because much of her pancreas, which provides enzymes for digestion, had been removed. Now before each meal, three times per day, she takes a capsule of Creon, which contains an enzyme replacement. This is quite expensive and is available by prescription, but there is an over-the-counter product, Vital, which just as effective at a fraction of the price, according to her oncologist. That solved the problem.

Trying to replace her lost weight is a challenge and our oncologist told us that at my wife's age, she will never get back to where she was.

I'm rambling on a bit here, but prior to my wife's surgery, she had a skull to thigh CT scan to ensure there were no other suspicious growths or nodules. With my wife they found a suspicious liver nodule which had to be biopsied and delayed the surgery, but it was benign.

I'm not a doctor, but I wonder how your oncologist knows it is a T1 tumor prior to the Whipple and pathology. I hope for your mother's sake it is, but I'm curious, because after endoscopy and ultrasound prior to surgery, they told us my wife's tumor was small and there was no lymph node invasion, which turned out to be incorrect.

We have no religious beliefs, but I wish you and your mother well during this trying time. Good luck.

Well, four years on since Whipple surgery and my wife is doing well, although she tires easily and has to be careful with what she eats. Her CT scans are now 6-monthly and look good, as does her blood work. We are back to riding our tandem, though not as far as we used to.