• Newly diagnosed--what to expect?

    Asked by suggi on Tuesday, July 14, 2015

    Newly diagnosed--what to expect?

    Getting appointment with specialist at Mass General in MA. Is this the best hospital to go to for bile duct cancer? Scared. Had breast cancer/mastectomy in 2002. In remission since then. That did not scare me half as much. Please and thank you for any input.

    16 Answers from the Community

    16 answers
    • GregP_WN's Avatar
      GregP_WN

      It's completely normal to be scared, but just understand that there are thousands here that have already been through what you are going through. Others will offer their experiences with your type of cancer, but I wish you well.

      about 4 years ago
    • geekling's Avatar
      geekling

      Take a bunch of deep breaths,from your diaphragm. The oxygen is calming. There are few courses of action .., fight or flight .. or mitigation.

      Hope you have a doctor who instills you with confidence.

      about 4 years ago
    • gonewest's Avatar
      gonewest

      http://health.usnews.com/best-hospitals/area/ma/massachusetts-general-hospital-6140430/cancer

      In[phone number redacted] Mass General is ranked #7 in the nation. NCI center. Looks like you're in good hands. We understand you are scared and most everyone here has felt what you're feeling. Best.

      about 4 years ago
    • gonewest's Avatar
      gonewest

      No phone number was included. The censorbot took away the year of the report which was from 2014 through 2015.

      about 4 years ago
    • geekling's Avatar
      geekling

      954 then 954 then 9543... i think spaces mess with the censor

      about 4 years ago
    • meyati's Avatar
      meyati

      I just read the high rating of Mass General in Oncology Today and ASCO about 2 weeks ago. They had their members rate oncology clinics, based on different standards-NIH just does stats, but ASCO asked how easy was it to work with oncologists in the different clinics. What was the patient feed back. Were these clinics supportive to the referring doctor and the patient. And MASS General was still rated quite highly-actually higher than NIH.

      about 4 years ago
    • meyati's Avatar
      meyati

      People have their biles removed because of trauma, part of the liver too, and they do OK, so you should do well with this.

      about 4 years ago
    • suggi's Avatar
      suggi

      Thank you all for your input. It does make me feel better and not alone. You have all been through XXX and you are still here.

      Perhaps if I am able to read what to expect from some who have gone through this cancer I will feel even better. I beat one cancer although a friend who had the same DCIS breast cancer 15 years ago had a recurrence in the side of the mastectomy - apparently they can not take out that lymph node in the middle of the chest and a cancer cell must have been sitting in there all this time and reared its ugly head and she recently died as it spread quickly. One just never knows but we can't dwell on what we can not do anything about.

      I do appreciate all the replies and feel so much better about Mass General. Thank you so much.

      about 4 years ago
    • meyati's Avatar
      meyati

      My daughter's fiancee was shot several times 26 years ago.. About 4 weeks later his bile was removed. His food was tasting nasty. They It would be nice if someone had that type of cancer spoke up.

      I would re ask the question with a better title---- Bile Duct Cancer- Help me-What happens?

      Good luck. I know that the dressings can be hard to manage, and the person was put in a nursing home to change the dressings. Hopefully things are different today-- but ask the doctor about your care after the surgery and see if you can find someone in your family or a neighbor to change the dressing. A dear neighbor had a fit, and made the doctor teach her 15 year-old daughter to change her dressing twice a day. I looked at some photos of liver transplants. They are just below the ribs. You just need to ask the question---You aren't getting the answers you need here.

      about 4 years ago
    • suggi's Avatar
      suggi

      meyali - Thank you but where on the site do I ask that question? I am new to the forum and really do not know my way around yet. I appreciate your letting me know and I will reask the question but do not know how or where to post it.

      about 4 years ago
    • meyati's Avatar
      meyati

      Hey- go to your home page. In the middle of the very top is a turquoise and purple bar. The very center has a big question mark-meaning question. The first blank place has a drop box for your diagnosis In front of the drop box- it says "Diagnosis required" Click on your diagnosis. Mine is head and throat cancer. It will open up to your bile duct cancer, and you click on it. Then in the box below that, ask your question-- Bile Duct Cancer- Help Me- What happens. Then you have a 140 spaces- just keep it brief---Please can anybody help me. Is there another person with this.

      Also on the upper left of this page, they have a box that says-- More questions- below that in the box, there are 3 questions. At the very bottom in small turquoise print it says "SEE MORE"

      Click on the "see more" that takes you to the questions- On the right side of the page there is a very long list of cancers. It starts with A. For example- it lists at least 3 types of lung cancer. You can look for both your bile duct- and the scientific name. You click on your type of cancer or the place where the cancer is. Click on either one- and the center of the page will list all of the questions about this cancer. Then you scroll through them and find questions that you think might help you. You click on that and it opens that question with all of the comments that people said. Sometimes it helps a lot- sometimes it doesn't help so much.

      about 4 years ago
    • meyati's Avatar
      meyati

      I found 44 questions-they cover everything from Merry Christmas, been in remission for over 4 years-but scared, Whipple procedure,drains, Do you know this surgeon? bloating- my waist went from 32 inches to 38 in four weeks of head radiation- the chemo or radiation affects your whole body. As my radiologist said, even if only my big toe was being treated, my stomach would still bloat. Go ahead and ask- we might have new members that can answer you. Sometimes a person is depressed so they don't answer, but later they feel like talking about it.

      Once I said that it would be nice if I could post pics on my Home Page. About 20 minutes later, I saw the download app, so I downloaded a pic on my home page. So don't feel bad about asking.

      about 4 years ago
    • suggi's Avatar
      suggi

      Meyati - Thank you for all that info. You are really a big help to me. Guess I have to become more computer savvy.

      I hope you are doing OK - you have had your share of problems and that darn C word. I really appreciate you finding out all that for me. Thanks again and couldn't do it without you.

      about 4 years ago
    • gonewest's Avatar
      gonewest (Best Answer!)

      http://cholangiocarcinoma.org/punbb/

      Link is to the Cholangiocarcinoma Foundation patient forum. Best.

      about 4 years ago
    • suggi's Avatar
      suggi

      gonewest - Thank you so much for your help. I do appreciate it.

      Hope you are doing OK.

      about 4 years ago
    • kalindria's Avatar
      kalindria

      In addition to being at a good hospital, make sure you have a physician (and a surgeon if you need one) you trust and who communicated clearly and completely. That makes a lot of difference.

      And all the best to you - you know you have a lot of people here rooting for your to beat this turd of a disease!

      about 4 years ago

    Help the community by answering this question:

    Create an account to post your answer Already have an account? Sign in!

    By using WhatNext, you agree to our User Agreement, and Privacy Policy


    Read and answer more bile duct (cholangiocarcinoma) cancer questions.  Also, don't forget to check out our Bile Duct (Cholangiocarcinoma) Cancer page.