Topic: My Grandmother was diagnosed the 13th

Hi,

I'm new here. My grandmother was diagnosed less than a week ago. She's my best friend and I love her TONS. This was a surprise. She hasn't been feeling well and then she turned jaundice. This was Oct. 2nd.

Went to the hospital and the doctor looked at her. He had that look on his face. You know that one where you know they know something but can't say it? That's the look. I've seen in a few times now. Anyway...He suggested tests. They found a blockage.

They did the scope and took a scraping. ( No biopsy because she was on blood thinners) They said it looked like Cancer but weren't 100%.

We said " They said it might NOT be too. Even if it is, maybe it hasn't spread."

They did the surgery to remove the lump and do the stomach bypass dealy. (  I don't know the name of it...sorry. Its supposed to help the bile situation so she doesn't need stints every 6 weeks) The surgery took less time than we were told.

They took us into a conference room. The surgeon wasn't looking right at us.

We knew.

Its in her lymphnodes. I spelled that wrong. I'm sorry I'm not very good at keeping this all straight yet.

They're supposed to tell us what stage and a rough guess of how much time.

I need to get help on what I should do for her. I listen and am there but I feel like I should be doing more. I'm nervous about what's coming up.

Any suggestions?

Thanks for your time
T

Re: My Grandmother was diagnosed the 13th

T,
I am sorry this has happened to your grandmother. The only thing I can suggest is that you advocate for your grandmother. Are they going to offer any treatment?

As to doing more,..you can only do your best. I often read carers beating themselves up for not doing enough. If you are doing your best you are doing enough. Watch her pain and make sure she is getting the best pain relief available to her. Managing pain and being there and listening and talking will help your grandmother.

I am very sorry this has happened.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: My Grandmother was diagnosed the 13th

As Lainy likes to say, welcome to the club that no one wants to be a part of.  This is the best site on the Internet for support and information about cholangiocarcinoma.  I know, I've looked.

Use the search function at the top to get information and experiences about this disease. 

I'm so sorry about your grandmother.  You will find a lot of people here who care.

Re: My Grandmother was diagnosed the 13th

T...T....I also would like to welcome you to our special little world of Cholangiocarcinoma. You are already helping your grandma by being involved in her treatment and by reaching out for information and simply, by being with her.  Once you will receive the pertinent information from the physician your grandma and you will have some decisions to make and I believe, these decisions should be based on as much information as possible.  Of course, I advocate for 2nd or 3rd or even more opinions as this cancer effects people differently. Gathering all records including surgery report and physicians notes plus any medical imaging and lab results and forwarding these to another center or physician familiar with CC would be one way of assuring yourself that nothing is being overlooked in re: to your grandma future plans.  And, don

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: My Grandmother was diagnosed the 13th

T,
   As the others have said, You are already doing enough. Just by loving your Grandma, and being there for her, that is SO important. As a Grandma myself, I can tell you how much difference that makes. In addition, finding this site will be a huge help - for her and for you. Advocacy is SO important - CC patients are the bravest souls, I have found, but - they need an advocate to fight alongside them. Sending hugs your way.

Joyce C.

Re: My Grandmother was diagnosed the 13th

Hi Tonia........   I can only echo what everyone else has already mentioned.  Advocation, second opinion without a doubt, love and support.  But as we all know, that's up to your Grandmother and how far advanced things are and what she would like to do, as the choice of quality versus quanity comes in to play for many of us..  As far as time, doctors can only suggest.  A lot depends on on the patient themselves and how they approach their treatment.  There are many of us that have been told to get our affairs in order, but are still talking up a storm years later.  There are many different treatments available and procedures that have proven to extend life very much so.  Each person is different.  As hard as it is, approaching this diagnosis with hope and a open and positive mind plays an important role.  Tonia, if there is something your wondering about and can't find the answer, don't hesitate to jump in and ask.  There is a whole array of first hand knowledge on this site and people willing to share their experiences with you.  I wish your Grandma only the best of the best, while she wrangles with this disease.

God Bless You and Your Grandmother,
Jeff

Take it to the Limit,One More Time! (Eagles)