Hello Sharon and congratulations on your husband's successful resection!  Some doctors will say when they have completed surgery and had clean margins that the cancer is "gone."  No one can truly say that cancer is cured because it can be microscopic, but at different points you can be cancer free and that may hopefully be forever.

I chose to have chemo after successful Whipple surgery for extrahepatic cc.  I did not do radiation.  This is all such a personal decision for each one of us to make.  I wanted to do the chemo even tho they couldn't tell me it did anything because they told me it was very "tolerable chemo: and I wanted to do the things I could.  I didn't do radiation for personal reasons that I won't go into here.

My best advice is to get all the information you can, read what you can, and make your decision.   Once your decision is made, don't second guess yourself because it will do no good and will only cause you distress.

Best wishes for you and your husband and whatever decisions you make are the right ones for you.

-Randi-

Too funny Lainy!  One of the best thing my in-laws did for us was to have all their arrangements made years before they died.  We plan to do the same thing for our children and have set a goal of getting this done before our trip to Ireland in October.

Glad you worked things out about the eternal rest with Teddy!

3

(26 replies, posted in Members' Cafe)

Percy,

I remember when I first came to this site and read your information filled posts and how comforting they were for me.  I too am a person who looks at things in a clinical way and need facts as well as comfort and you fulfilled all of those things for me.

The measure of a person is not what they have but what they give, the impression they leave on others who are lucky enough to cross paths with them.  You, my friend, are beyond measure.  You have helped so many, even when you yourself were suffering, always with dignity and care.

I too hope that you are comfortable and that your family is being taken care of. I will keep you in my thoughts and prayers.  I am hoping for peace and serenity for you.

With love and great respect,
-Randi-

4

(12 replies, posted in General Discussion)

Hey guys!

My two cents is that some people don't tell what "kind" of cancer they have because they want to be surrounded by hope and some cancers just don't come with that hope built in (like breast cancer has hope because of new treatments, etc.).  I find myself telling people, when I do tell them, that I am survivor of cholangiocarcinoma and then say liver cancer because most don't know what CC is.  People understand liver cancer because it sounds 'serious'...nobody even knows they have bile ducts!

Also, another thing that may cause people to hold back on the type of cancer they have could be because of judgment (lung cancer = you did it to yourself smoker).  Or it's in private parts (anal, colon) and people don't want to people to know.  I think Michael Douglas said he didn't say the correct cancer because the usual treatment for the cancer he had was disfiguring.  When people find out I have had 3 cancers they imagine that I am feeble and sick all the time, hopefully until they meet me!  Assumptions abound for sure.

I am a straight forward person and say it like it is for most things, good, bad, or indifferent!), but I get why others want to be private.

Sorry I haven't been around a lot...work has been all encompassing.  Working with those with addictions and mental illness is challenging for sure and I have not mastered the art of leaving work at work yet.

Glad to see all of you online when I stop by and read.  Take care all.....-Randi-

5

(6 replies, posted in General Discussion)

Crissie,

First I am so very sorry about your father's death.  Because he had CC does not mean that you automatically get it.  The fact is, many people who get CC have no family history of CC. 

Then i want to say that a lot can happen in 20 years.  There can be a lot of progress on treatment and diagnosis.  You are very aware of things, so you can be very proactive about your health.  You can adjust your lifestyle, for example, eating better, exercising more, etc.  Unfortunately none of us has a crystal ball.  You know, control the things that you can.

I am sure that doesn't make you feel any better because you lost your wonderful father to this disease and life is feeling pretty fragile and unpredicable for you right now.

My best advice is to stay in the moment, enjoy your days, love the people you love, do the things you like to do,...well you get the picture.  All things that are hard to do when you are grieving.  Take your time, accept how you feel and try not to judge it or yourself too much.

I hope that wonderful memories of your father replace your sadness soon.

Hugs,
-Randi-

6

(9 replies, posted in Good News / What's Working)

Wow, surfing!!  I did it once and it is damn hard thing to do.  Lots of respect here!

-Randi-

7

(13 replies, posted in Good News / What's Working)

Wow, that is awesome news Porter!  You are an inspiration to everyone on here!  Enjoy the summer.
-Randi-

8

(8 replies, posted in Introductions!)

Beth,

I am so very sorry to hear about your mum's passing.  Sounds like she was quite a lady and I am sure she will be missed by many.  Take care of yourself.

Hugs,
-Randi-

9

(11 replies, posted in Members' Cafe)

Happy birthday to your Mom!

10

(20 replies, posted in Introductions!)

Hello Rob,

Welcome and as others have said, sorry you had a reason to find us.

I had Whipple surgery where they removed the head of pancreas, gall bladder, duodenum, and re-plumbed all of my ducts.  I was told that my pathology showed no distal disease, no lymph node involvement, and clear margins.  I was also presented the choice of chemo and/or radiation.  I chose to do chemo mostly so I would have no regrets if the disease returned.  I declined radiation because it didn't seem to be indicated, no one could tell me that it did anything to increase my chances of survival, and it can be damaging (I've had it before for breast cancer).

It's a very personal choice for sure and I say go with your gut (no pun intended) and never ever regret your decision.

Wishing you great good health!
-Randi-

11

(9 replies, posted in Thought for the Day)

Happy belated birthday Kris!!

12

(6 replies, posted in Members' Cafe)

glad to have you back Kris! and hoping that you are feeling better both physically and mentally.  It's a wise person who knows their need to pull back and regenerate.

Love your moniker "Road Warrior" as so many people are warriors in this fight.

14

(13 replies, posted in Introductions!)

Welcome Virginia!  I agree with Lainy, you are an awesome survivor and an inspiration to others. 

Congrats on a great recovery.

-Randi-

Love it!! Thanx Lainy!

Google search on Cholangiocarcinoma, just that easy.

17

(11 replies, posted in Introductions!)

I am so very very sorry to hear that your just died.  May your happy memories soon replace your sadness.  We are here for you.

-Randi-

18

(7 replies, posted in Introductions!)

Hello and welcome to the site...and I am sorry you had a reason to be here.  I second what Lainy wrote, experience with CC and 2nd, 3rd and even 4th opinions are in order with this rare disease.  Good luck and update us with your progress.  Wishing you the best.

Percy:  So nice to see you posting here.  Hope you are feeling ok and from your post it sounds like you are enjoying life these days.  take care, you are never far from my thoughts.

Hugs,
-Randi-

You go girl!

Caroline,

I agree with Kris, so sad and inspiring at the same time.  Your mother sounds incredible as do you.  My thoughts and prayers are with you and your mom.  I can see you are using the time left to really connect and that is such a blessing.

Hugs,
-Randi-

21

(28 replies, posted in Introductions!)

Thinking of you, your Mom and all of your family at this difficult time. 

-Randi-

Hi Mike,

I would like to add my welcome to the others here.  I am sorry you had a reason to find this board, but you will get great information and support from the people here.

I don't know anything about immunotherapy, but I imagine someone will come along who does.

Take care,
-Randi-

I filled out the initial form today.  Unfortunately (for a lot of reasons) I am not under 50, but the Mayo does have my tissue sample and blood work on record there.

I will pass along the information.

-Randi-

24

(9 replies, posted in Introductions!)

Just want to add my welcome to the others.  Losing a parent is never easy and I am sure you have some great wisdom and insight to share.

-Randi-

25

(23 replies, posted in Introductions!)

Stephanie,

I was so sorry to read your post about Matt, but thank you for updating us.  Sounds like Matt fought a good fight. My sincere condolences.

Please come back here when you need support. Many here on this site have unfortunately been in your shoes. 

My thoughts are with you and your family.

Hugs,
-Randi-