Topic: New Member

My husband, 42 years old, was diganosed yesterday. No symptoms. Just results from biopsy on 9/20/12. I'm not accepting very well the things I've read so far and I am just really scared. We have a 11 yr old daughter and a 9 yr old son. We are all very confused and still stunned. Not sure what to do next. My main focus besides my husband is how to help my kids cope. I don't want to lie to them and I don't want to scare them.

Re: New Member

Dear tlcassara-
I am sorry that you too have learnt the word- Cholangiocarcinoma. This website will give you and your husband much advice and support.
As the next few days unfold you and your husband will be given a lot of information.
Try to take it one day & one doctor appointment at a time for now.


Chrissy

Re: New Member

Dear tlcassara, welcome to our remarkable family but sorry you had to find us. We know just how you are feeling, kind of like you have been hit with a baseball bat in the stomach! I am a little confused as to why a biopsy was done with no symptons?
Can you tell us where the CC is located and where your husband is going to be treated? This just breaks my heart every time we get a new person who is so young!
I know your plate is full right now but try to read up as much as you can on CC as knowledge is the best tool we have to fight this with. We also have a search engine at the top of the page and just type in a word and posts will appear on that subject.  I promise you that once a game plan is in play the fright turns to fight. We also have a Dr. Giles at the top of the page who perhaps can help you how to handle this with the children. Everyone handles things in their own way, I personally use the talk method. I feel the more we talk about things the more they are understood and you will be surprised how strong children can be. I know there must be some childrens books out as well on coping with illness. Please know that you have come to the right place and you are NOT alone in this, you have a whole new family here and will get tons of advise and questions answered. I learned that my bottom line was strength, the stronger you become the more you can handle the journey. A journey none of us wanted but try to be very strong! Please keep us updated as we truly care.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

4 (edited by PCL1029 Tue, 25 Sep 2012 14:26:52)

Re: New Member

Hi,
First, don't  panic. the age factor is on your husband's side,that means,with proper care and follow through;he can fight the battle better and can tolerate the drugs effects better and longer and a lot of the new drugs will be coming out in the next 5 years and hopefully will end this cancer discussion.
You did not mention how your husband discovered the cancer without symptoms; discovered by accidents: or unrelated problems with this relatively rare cancer-Cholangiocarcinoma. it makes a difference in future discussion. Can he have surgery to remove the tumor?;where the tumors are located? any metastasis to other parts of the body?any pre-existed conditions prior to discover this cancer? where your husband be treated now?
If you are living in California,the best place for this cancer is U.C. at San Francisco.
Other caring people will continue to show their support and will talk to you shortly.
but just give you some ideas about me ; I am a patient of this disease for the last 39 months.
My attitude is to treat my cancer as a chronic disease like diabetis or hypertension and read a lot to prepare for my future.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: New Member

It is located in his liver right now and is growing. We stumbled on to it from his annual physical. There they found abnormal blood (too much iron). They continued with more tests, MRI's. There they located a "mass" and sent him in for biopsy due to it growing. We will be making a trip to SF soon. I will get in touch with Dr. Giles in regards to the children.

Still stunned right now though.
Thanks for your support.

Re: New Member

Chrissy....welcome.  You have come to the right place.  When hearing the big C word with the addition of the disease no one seems to have heard of, we react with shock and disbelieve. And then, dear Chrissiy, we learn to research, ask questions and slowly understand what this cancer is all about. 
Please know that your husband's cancer is his very own disease and that his own response is not measured by that of others.  Therefore, try to stay positive and try to learn as much as you can possibly absorb.  "KNOWLEDGE IS POWER" translates into "with acquired knowledge we have the power to make educated decision."
In regards to your children, The American Cancer Society has a useful article on children coping with cancer.  You might want to look at:
  http://www.cancer.org/Treatment/Childre … l-children

Again, I am glad that you have joined our group.
Please, stay strong and reach out.  We are in this together.
Hugs,
Marion

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: New Member

Chrissy and like all others have said, welcome and sorry you had to find us. I am a CC survivor, 3 years and 4 months cancer free. Please read my story at www.catherinedunnagan.com under the telegraph link. I have an amazing story to share and proof there is HOPE. My miracle worker was Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO. Dr. Susan Logan was one of the doctors on his staff and has relocated to Fresno, CA. My doctors were the kindest most caring doctors, besides being in the top 100 docs!!
I remember getting the diagnose and my first thoughts were about my child who was 21 then, so my heart feels for you.
Please keep posting,  asking questions and venting because you are surrounded by love here.
Lots of prayers-Cathy

Re: New Member

Dear tlcassara,


I am sorry you have joined us but you came to the right place.  My father (65) was diagnosed back in May and it felt like someone took my heart out and cut it into pieces.  He didn't show any signs either, other than loss of appetite and an episode of extreme gas.  It is in his liver too.  He was stage four when first diagnosed.

Now he is doing so well.  He will finish his 8th round of chemo and we know due to last scan thinks have shrunk.  Please don't take it as a death sentence as I did.  There is hope.  We don't know the outcome but every day we are thankful he is here and staying positive (SO IMPORTANT).  Chemo hasn't been the greatest (of course, because it is a change in their daily lives) but he deals.  He is actually going hunting this weekend with my brothers and friends.  He can't shoot because of his port but he feels good enough to go along for the ride.  WE ARE SO HAPPY FOR THAT!!!

I know you need time to allow it to sink in but stay with us and ask away.  This place is full of info and great people.  Allow us to support you and answer any questions we can (not me though, I just try to give support, understanding and positive updates).  I ask a lot of questions.

If I can be of any help, let me know.  Take it one day at a time.  God bless you and your children. 

Praying,

Suzy

Re: New Member

Hi,
If I may, look up the recommended doctors in different field under our experience forum about UC SAN FRAN medical center.
You need first to see a Liver specialist ( liver transplant or surgeon ) to assess the possibility of liver surgery or resection, for it is the ONLY possible cure for this disease at least for now.
Second, consult a medical oncologist for chemo treatment if needed and third, consult with the interventional radiologist for possibility of treatment.
Do them all down there in San Francisco ; schedule them within the same day or the next day. Bring all your reports and most important, THE CT scan disc copy and blood report.
Keep in touch and
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: New Member

Hi,
Welcome to a wonderful group of supporters. I was diagnosed two years ago at 45 years old. The initial diagnosis was so shocking I couldn't think straight. Like Percy said, knowledge is key. Our children are 15 and 21 and we have been upfront with information but not enough to totally freak them out. I find when I am upset and sad it carries over to my family and changes the mood of our house. I stay positive knowing that I trust in God and my doctors.
Lisa

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: New Member

Chrissy: Cathy had mentioned Dr. Susan Logan for a possible second or third professional opinion. Given that it close in vicinity, I thought it might be another resource for a second or third professional opinion. 
7415 North Cedar Avenue #102  Fresno, CA 93720
(559) 435-6600.
We don't have a doctor on board (sure would love to see that though) but we are here to share our thoughts and experiences and lend support to all touched by this disease.
Good luck and please, keep us posted.
Hugs,
Marion

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: New Member

Liz, may I say, "you are an amazing woman!" You said what I was trying to say about the children and you did it so eloquently. I think you are quite a woman! I totally agree with all you said, and it is a good post for anyone concerned about their little ones, thanks so much!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: New Member

Liz, you have come a long way in a short time! Teddy was a very wise man and he constantly told me to be strong and I truly believe that is what got me through. Not everyone can do that as you have and I wish they could because it really does get one through. Oh, that doesn't mean we don't have some moments but we do what we do in private. In the beginning I could see Teddy steeling his mind for he had to go through and what he knew may not work. Then one day he said to me, I have steeled my mind and if people break down in front of me, it will break down what I have accomplished. That is all I had to hear and I NEVER broke down in front of him. His last words were to tell my daughter how much he loved her then he turned to me and said, "Be strong". I already knew how much he loved me and it is for him that I still try to be strong. Now, girlfriend, lets get some sleep!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: New Member

Thank you everyone for sharing and caring. We have an appt on 10/16 in Sacramento. We are trying to get something sooner. I'll be checking in periodcally. God Bless.

Re: New Member

Liz.....I applaud you.  You are confronted with the most difficult of circumstances and still you offer your helpful advice to those in need. 
The issue of small children and cancer continues to be one of the most heartbreaking situations on this site.  You have set a standard and have provided guidance for parents in similar situations.   
I know that in the time to come you will continue to draw on your wisdom and strengths. 
My heart is with you.
Hugs and love,
Marion

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: New Member

Liz-
I think about you often.