• "Highly suspicious" of pancreatic cancer (adenocarcinoma) after two biopsies, a CT scan, and several blood tests.. discharged, now what?

    Asked by tiffanyw on Sunday, January 5, 2014

    "Highly suspicious" of pancreatic cancer (adenocarcinoma) after two biopsies, a CT scan, and several blood tests.. discharged, now what?

    Since Dec. 27, when my mom was admitted to the hospital for extreme abdominal pain, and many of the above tests, doctors leave us discharged with no answer, no diagnosis. Nothing besides that it is unresectable based on the spread to local blood vessels. They keep saying they cannot say 100% that it is pancreatic cancer but are highly suspicious; only other possibility being autoimmune pancreatitis.

    Based on what I have researched my mom may already be in stage III. I don't want to play the waiting game. Has anyone else encountered this? I am very frustrated and at a loss of what to do. Considering looking into US pancreatic specializing facilities but hoping a call from local cross cancer institute will come within the next week.

    12 Answers from the Community

    12 answers
    • FreeBird's Avatar
      FreeBird

      Did they put you in contact with someone from the cancer center yet? Mom might give them a call and find out what to expect next from them.

      If you need someone in the US, you could try contacting the Pancreatic Cancer Action Network, which has a list of doctors that might be useful for second opinions. pancan.org

      I hope they gave your mom something for the pain at least, in the meantime.

      about 6 years ago
    • armyret's Avatar
      armyret

      I am surprised that doctors have not given you a firm diagnosis. If you haven't already done so... I would look for an Onconlogist who could read the CT scan and begin a plan of Chemo or Radiation (or both) for your mom.

      about 6 years ago
    • FreeBird's Avatar
      FreeBird

      Your mom should also ask for copies of the pathology reports and radiology reports. That should describe exactly what they saw from the biopsies and scans. What they look for in the blood test is a tumor marker called CA19-9. However, not everyone with pancreatic cancer will have an elevated CA19-9. http://www.pancan.org/section_facing_pancreatic_cancer/learn_about_pan_cancer/diagnosis/CA19_9.php

      about 6 years ago
    • tiffanyw's Avatar
      tiffanyw

      Freebird - the physician said she would call and relay all the information to the cross cancer institute tomorrow to see what they think should be the next step. The team of health care providers suggested that we could be considering a major surgery to obtain an even larger piece of tissue not through an endoscopy that may endanger my mom's life or if they can confirm that their suspicions of adenocarcinoma was correct with the existing information.

      Thank you for the link I will give it a look. And yes, they gave her a prescription for tramacet. We also obtained all the pathology reports and CT scan results. I will definitely look into that.

      armyret - Me too... Yes we will have to wait and see what the GI oncologists at the cross cancer institute in my city say first. Unfortunately it will take 1-2 weeks.

      about 6 years ago
    • FreeBird's Avatar
      FreeBird

      It seems like the ball is moving forward at least, and a cancer specialist will take a look at it.

      about 6 years ago
    • Rick1970's Avatar
      Rick1970

      Hi Tiffanyw, My wife encountered something similar to your mother's experience. However, after a second round of CT, EUS & ERCP procedures, the primary GI Doc requested that her biopsies of the pancreas and near-by lymph nodes be sent to Mayo Clinic in Rochester, MN for a second opinion. Their pancreatic cancer specialists found evidence of cancerous pancreatic cells that were missed by the local hospital's lab. Soon after, this diagnosis lead to a CT/PET scan and liver biopsy that further confirmed pancreatic cancer and it had already spread to the liver. Not what we wanted to hear, but at least we were able to begin the process of developing a treatment plan with an oncologist. Best wishes for your mother, Rick

      about 6 years ago
    • janabel681's Avatar
      janabel681

      My pancreatic cancer was found because I turned yellow. The tumor was laying on my bile duct and that caused me to turn yellow. I was given the death sentence of 6 mo. to a year. That was Jan 20, 2012. I am in remission. I credit the doctors at M. D. Anderson in Houston, TX. It is a teaching hospital and part of the U of TX. I have learned through the experience, that your local doctor has rules they have to follow... A teaching hospital can think "outside the box"! My advice is to go to Houston and see the doctors there.

      about 6 years ago
    • cjay's Avatar
      cjay

      I'd agree with you and not wait very long before going someplace else for answers. The earlier you catch this thing, the better it is.

      about 6 years ago
    • Russ' Avatar
      Russ

      Hi TiffanyW,

      Am I correct in saying that you live in Edmonton, Alberta, Canada? In either case there is absolutely no reason why your mother should have to wait for some type of diagnosis. I agree with what everyone has said about getting a second opinion...now! Outside of checking with the Mayo Clinic in Minnesota, I would try to find a university medical center/hospital in your area. They are usually up on the latest medical diagnosis, and clinical trials. That is where they sent me right away. I live in southern New Jersey, and when I was diagnosed with stage IV pancreatic cancer, there were few, if any, cancer centers that could deal with pancreatic cancer, so they sent me to the University of Pennsylvania Hospital. I had a few more tests and had surgery within 2 weeks, before the cancer had a chance to spread, except to the first lymph node. The amazing thing about it is...that was 13 years ago. As FreeBird mentioned check with PanCAN...they have a staff that can research for you the latest in clinical trials, and help you find a medical center that has dealt with pancreatic cancer for many the years.

      Our best to you, and your mom from the folks at WhatNext,
      Russ

      about 6 years ago
    • deSmile's Avatar
      deSmile

      The only recommendation after our 6 months of experience is find your way to a major pancreatic cente such as MD Anderson in Texas or Johns Hopkins in Baltimore are your best bets, also Pittsburgh and others. Good luck.. we are so blessed to have been in the Northeast as we have the best at Johns Hopkins. Let us know if you need help!

      about 6 years ago
    • deSmile's Avatar
      deSmile

      Get in touch with Martin Makary, MD at Johns Hopkins... the best

      about 6 years ago
    • greatlife's Avatar
      greatlife

      have you gotten another opinion? Can you get to a major teaching institution? I would get an opinion from a pancreatic GI oncological surgeon at a major teaching institution. I believe that is where most of the best, cutting edge medicine is practiced.

      about 6 years ago

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