Need Advice: Whipple Surgery - Distal common Bile Duct Stricture

virginiagal172
virginiagal172 Member Posts: 3
in Rare and Other Cancers #1
I came across this site after numerous searches over the Internet for Whipple Procedure and Bile Duct. My Mom started with this and we are 7/8 months into this still with no real clear answers.

In short this is what has/is going on.

My Mom had a ERCP performed and she had a lot of sludge in her Bile Duct so, they performed what they call a brushing and inserted a stent. The test results that came back showed to be inclusive, but showed Atypical cell (Not always cancerous - Could also be from inflammation)She then had a procedure performed where they went down with a camera and performed a biopsy. The test result came back negative. She is have a node on the top of her pancreas and it states in her medical records that it was negative for malignant cells.

Both these doctors recommended her to a General Surgeon. We met with him this past weekend and he wants to perform and schedule her for a Whipple Procedure. This is what he explained to us. The biopsy came back negative for maglegmant cells and the brushing only showed Atypical Cells. He states the only way to rule out 100% that is was not cancer was to have this procedure performed.

I have been doing a lot a research since yesterday after meeting with him and this is a very risky procedure and of course has us all upset/sad and worried.

He does have her scheduled for a CT scan and have her PSA levels taken. We are suppose to meet back with him next Wednesday.

If these test results come back showing negative, I am so undecided to let my Mom have this surgery (She feels the same way) I don't understand why this procedure has to be done to confirm she has cancer? If he does this risky surgery and she doesn't, then her life can change dramatically from what I have read including death.

I wanted to know if someone else is or has gone through what we are "the un-knowing"

I am going to get a 2nd opinion before any decision is made. If anyone can provide any advice or insight on this situation I am all ears. Sorry I try to give a lot of info, but tried to keep it from being to long

Thanks, Teresa :)

Comments

  • Oneshot
    Oneshot Member Posts: 153 Member
    #2
    Just my opinion. get a second opinion!
    Teresa,
    In 2008 I was diagnosed with pancreatic cancer without having the Whipple to diagnose it as such. Prior to the Whipple which I had to have for my cancer. I also had a stent put in my bile duct. Now I might add. I had stage 3 PC. So in my case it was pretty easy to see and test for. GET A SECOND OPINION!! I might suggest finding a doctor who specializes in pancreatic cancer if you feel this might be what she has. In my case I went to TX Oncology.
    Mine was first found by an emergency room doctor. He suggested I go to a dedicated oncologist and surgeon for pancreatic cancer to confirm what he spotted with a blood test and a scan (It reminded me of an ultrasound scan but, I'm not for sure. I was in extreme pain.)

    PC is often very hard to detect and the pancreas is in a difficult place to see. Not to discount the general surgeon's knowledge and skills. I would still suggest a good oncologist and "IF" at that time (after they do their tests) they decide she has PC. Find a surgeon who specializes in the Whipple procedure.

    No need to apologize! There is no such thing as being to long when you think you might be possibly dealing with cancer.

    Will keep you and your family in our prayers!

    Oneshot
  • virginiagal172
    virginiagal172 Member Posts: 3
    #3
    Oneshot said:

    Just my opinion. get a second opinion!
    Teresa,
    In 2008 I was diagnosed with pancreatic cancer without having the Whipple to diagnose it as such. Prior to the Whipple which I had to have for my cancer. I also had a stent put in my bile duct. Now I might add. I had stage 3 PC. So in my case it was pretty easy to see and test for. GET A SECOND OPINION!! I might suggest finding a doctor who specializes in pancreatic cancer if you feel this might be what she has. In my case I went to TX Oncology.
    Mine was first found by an emergency room doctor. He suggested I go to a dedicated oncologist and surgeon for pancreatic cancer to confirm what he spotted with a blood test and a scan (It reminded me of an ultrasound scan but, I'm not for sure. I was in extreme pain.)

    PC is often very hard to detect and the pancreas is in a difficult place to see. Not to discount the general surgeon's knowledge and skills. I would still suggest a good oncologist and "IF" at that time (after they do their tests) they decide she has PC. Find a surgeon who specializes in the Whipple procedure.

    No need to apologize! There is no such thing as being to long when you think you might be possibly dealing with cancer.

    Will keep you and your family in our prayers!

    Oneshot

    Thank you Oneshot, That actually makes me feel better to know that there is other test out there that may be able to confirm if she may or may not have PC. She has went today to have a few test today and has a few more scheduled for tomorrow and this Saturday. We are suppose to meet with the Surgeon this upcoming Wednesday to go over the results. At that time I will ask for the copy of the test results and seek for a second opinion.

    I am just so confused, because he (The Doctor) is so willing to jump and advise us on getting the Whipple Surgery. He stated that the only way to know 100% if it is cancer is to do this test.

    I have been googling like there is no tomorrow on the issue :)

    I really appreciate you replying back! It does give me hope that there is another route. Thank you for keeping us in your prayers. Hope you are doing great after your surgery. Will also keep you and your family in my prayers.


    Teresa
  • mr steve
    mr steve Member Posts: 285
    #4
    advice
    Get a 2nd opinion. Whipple is a tuff surgery and there are always complations that arise from it. My wife had it and resulted in an abcess, her liver got inflamed had to get a ERCP to put a tent in her liver. had to get a drain put in. So if its not cancer then she might not need the surgery. so get a 2nd opiinion. and did any one tell you to get a 2nd opinion?
  • virginiagal172
    virginiagal172 Member Posts: 3
    #5
    mr steve said:

    advice
    Get a 2nd opinion. Whipple is a tuff surgery and there are always complations that arise from it. My wife had it and resulted in an abcess, her liver got inflamed had to get a ERCP to put a tent in her liver. had to get a drain put in. So if its not cancer then she might not need the surgery. so get a 2nd opiinion. and did any one tell you to get a 2nd opinion?

    No, none of the Doctors have suggested for us to get a 2nd opinion. When we go meet with the Cancer Doctor (General Surgeon) on Wednesday we wanted to get a copy of the CT Scan & PET Scan. (I hope he will give us a copy) I have emailed/called other Cancer Doctors in a different hopsital to schedule a appointment to get a 2nd opinion.

    I'm not sure how the Cancer Doctor on Wednesday will react once we tell him. I hope he would be understanding. Even if he is not, I feel there is no other option of moving forward until I seek another opinion.

    I agree with you, since she has not been diagnosed with any Cancer, we should seek other information and advice before just going ahead with this procedure.

    Thanks for your advice and help :)
  • DBJ1234
    DBJ1234 Member Posts: 5
    #6
    Cancer on Distal portion of Bile Duct
    I had a jaundice and other symptoms. The doctors performed ERCP, it was inconclusive. A second procedure was done to insert a stent.

    I waited a week, the doctor called said it was cancer on the distal portion of the Bile Duct.

    I than had surgery,a full Whipple. After this I had three different doctors reviews regarding post surgery chemo and radiation. They were divided because the surgeon said he had removed all cancer cells!

    Eventually I had all forms of treatment. I was convinced by the doctor who said if the cancer comes back and you have not done all you could do to prevent this, you will be sad.

    I am now 68 year and have had 12 years of recovery... not ever easy.

    How is your mom doing?

    Thanks for helping you mom. You will never know how much a child's concern and help measn when one goes through this journey.

    Dennis
  • eileenva
    eileenva Member Posts: 1
    #7
    mr steve said:

    advice
    Get a 2nd opinion. Whipple is a tuff surgery and there are always complations that arise from it. My wife had it and resulted in an abcess, her liver got inflamed had to get a ERCP to put a tent in her liver. had to get a drain put in. So if its not cancer then she might not need the surgery. so get a 2nd opiinion. and did any one tell you to get a 2nd opinion?

    Biliary Stent question

    Sorry to be posting this so long after your initial post, but your wife's situation sounds really familiar to that of my husband, so I thought I would ask about her situation. My husband had a whipple in early 2011, and had both of the same complications that your wife had. (abcess, and biliary stricture) Instead of placing a stent with a scope, they went in through his side and biliary tree, which resulted in him having an external drain for 6 months and several painful upsizes. The drain was removed about a year ago, but he seems to be experiencing the same symptoms he had with his prior stricture, so they suspect that he may be developing a new stricture. How was your wife's stent placed, and how effective was it? Also, how did they recognize that she had a stricture? Did she have any/all of these: Weird liver panel numbers, tenderness of liver, fever, jandice?

    Thanks, Eileen

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