Here to support my brother in law
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Hi Laura- My husband was diagnosed with distal CCA in March and had a Whipple in mid-April, I know all too well what a scary and disorienting time this must be for your family. I am echoing what the others have written and suggested.
I personally feel it’s important that the hospital and the surgeon have performed many Whipple surgeries. For my husband’s Whipple, the medical center had done 50+ surgeries in 2016 and the surgeon had been the lead for 18. It’s important that your BIL and SIL feel comfortable and confident in the surgeon. Our’s initially met with us for well over an hour, went over what he was seeing on the scans, drew pictures on a white board, and answered every question we could think of. He told us to take a few days to think everything over and emphasized that nothing had to be done immediately. We did not get a second opinion on the surgery (our choice) but second opinions are a good thing and many folks on this discussion board have clearly benefited from getting more input.
I’m glad you found us and I wish you and your family well as things move forward. Blessings, Tilly
Laura….already you have received excellent adive from Debbie and positivity. You are doing everything a good advocate will do in that you are searching for answers to this rare cancer.
Here is some additional advice:
Most importatnly Obtain a second professional opinion from a center treating a high volume of
cholangiocarcinoma patients. These centers provide a tumor board consisting of a surgeon, oncologist, radiologist and pathologist.
Peruse the discussion board and take a look at the Newly Diagnosed thread
Take a look at the main website http://cholangiocarcinoma.org
Make sure DNA and molecular testing is requested and sent to a lab such as Foundation One or Caris or another qualified lab.We are here to help and are with you, all the way.
Hugs
MarionLaura,
I would also like to welcome you to our group. I think it is wonderful that you are educating yourself about this disease in order to support your bil . There is not a lot of information available on the general Internet about this rare cancer. Our board is an excellent source of information and a supportive community of patients and their loved ones.
One of the first things you will find on this site is that it is critical that a new patient be treated by one of the medical centers that is highly experienced in treating CC. Is your BIL located near you? If so, there are several excellent medical facilities in New England that are on our recommended list.
Distal CC is one of the less common forms, but recently we have had a few new patients/caregivers diagnosed with distal. Hopefully, they will respond with their experiences.
Debbie
Hello Laura,
Welcome to our forum and it is crucial you get knowledgeable and seek a few opinions. You will find this to be a great support with abundant information. All of us came here to seek answers and be informed as this is a rare condition. Sometimes we tend to act quickly due to our shock and emotional state, but give yourself time to digest and understand this condition.
I am sure more will share experiences of the Whipple procedure. You may also use our search function to look up the procedure.Hi, I’m glad i found this site.
I’m Laura, my brother in law B. was just diagnosed with bile duct cancer – he’s young and he and his wife (my husband’s sister) have a young daughter.
I joined here because this site and forum seems to have some good resources on what to expect post-operatively and throughout his treatment. My husband and I want to be informed without overwhelming B and his wife with 100 questions.
B’s doctors have recommended a whipple, it’s a distal bile duct tumor with one possible small site in his liver as well, although they are unsure of that. It’s still very early, so we don’t have a lot of details yet other than that they think the surgery is a good option, and will be scheduling it soon.
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