Topic: HI

I am a little overwhelmed at this point.  They diagnosed my cholangiocarcinoma in October & I am still not having any treatment.  There are so many doctors to see & tests to take & all the authorizations for treatment.  During all this all I can think about is that my tumor will grow!

Re: HI

Welcome to the site and sorry you had to find us.  Can you tell us a little more about your situation?
I don't understand why you would be diagnosed in October and not have received treatment yet.  Did they give you a reason? Where are you being treated?

-Susie

Re: HI

Patty...welcome to our site.  Like Susie I am wondering as to why you have not received any treatments?  Also are you covered by insurance? 
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: HI

Hi Pattimelt,

I would like to welcome you to this site. I, like Marion and Susie, am very concerned as to why you are not being treated yet. I don't blame you for being overwhelmed and I hope things change quickly. Please let us know what happens. We are all here to help.

Hugs,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: HI

After my biopsy I went to an oncologist in my healthcare network.  She had me have a PET scan.  It came back with good results as far as the CC had not spread to any nodes or anywhere else.  It is inside my liver.  I have no symptoms yet.  No jaundice or grey stools.  I feel fine (except for trouble with diverticulitis attacks).
She said it is very hard to treat CC so advised that I go to UCI medical center where there are specialists in this type of cancer.  So then I had to start the process of getting all the authorizations being out of my healthcare network.  We only have an medicare supplemental HMO.  On Dec. 26 I saw a surgeon who said because of the size & location of my CC surgery would not be an option at this time.  I then had to wait for authorization to get the 'sirtex' radiation treatment.  It was authorized & I saw a radiology oncologist & a radiologist Monday.  I had more bloodwork & now need an updated CT scan before proceeding with the treatment.  1st have to have the angiogram that will map the path for the radiation.  Right now I am waiting again for results of bloodworm.  Everyday seems to be too long for me.  I am glad to find this support!!

Re: HI

Hi,
May I ask how old you are. Radio embolization will be what you will have. Based on the experience of our board members who is older( >65) and had this procedure, the result are not what I had expected.
In my opinion ,you should definitely need a 2nd surgical opinion by a liver surgeon who do a lot of operation of this disease  ; this is by far the most important step to be possible cure from  this disease. USC will be the close hospital that can provided you the answer, call him up,  I think the name is Dr. Selby,fax the CT SCAN result and lab work right away to him without delay.
Remember , that cancer need experienced surgeon to operate on, and there are not that many in the States. Even you have to pay for the expense that is not covered by HMO, it still you best bet for the chance to possible to have the CURE. Rather just have the palliative treatment of radioembolization.
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: HI

I am 66.  I will check it out.

Re: HI

Patty....I agree with Percy in that you should obtain a second opinion from a surgeon (very) familiar with this cancer.  Most likely you would have to pay out of pocket, but I would think that it may be less than $400.00 (hopefully less.)  Some time back we had a member in a similar situation in where he obtained another opinion from a physician treating numerous CC patients and it changed the course of his treatment.  This is a complex surgery and with a cancer such as this you would want to make sure that your physician has operated on many Cholangiocarcinoma patients.
Please, keep us posted.  We care.
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: HI

The surgeon I saw at UCI is very familiar with CC.  Dr. David Imagawa. He is the chief, division of hepatobiliary surgery at UCI. The Chao Family Comprehensive Cancer Center. 
Thanks again for your input.  I agree with 2nd opinions but they take time too.  I am trying to get this whole process moving as quickly as I can.

Re: HI

Patty....Agree with you.  Things do need to move forward a bit faster than what you are experiencing.  Hang in there and please keep us posted.  We care.
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: HI

I had my CT scan on Friday so should hear tomorrow as to what is next.  I am having so much anxiety over this.  I am a strong Christian & believe totally in God but at this point I don't feel much peace.  I have had divirticulitis & trying to avoid getting another attack during my upcoming treatments.  I want to live each day to the fullest but it is hard to do anything but worry!  This is an awful cancer.  I am actually surprised to see how many people have it.  I thought it was only 2 out of 100,000 people who get it.  I am rambling but just needed to talk to some people who have been there or are going through it too.

Re: HI

Patty...You are not alone. The psychological and physical manifestations of anxiety are konwn to be prevalent in the cancer community hence this site has numerous discussions focused on what we call "sanxiety." There always are two sides to everything; on one hand you have completed the scan (a big plus) whereas on the other hand you are awaiting the results (nerve-racking.)  It might help to focus on the positive; you are a step closer to receiving a concrete answer and for the game plan to be set in place.  The cup is half full - half empty kind of thing, dear Patty.  It may also help to just let it out, scream it out, and then take a deep breath while marching forward with renewed energy. 
On the other hand you must remember that you and you alone will set the standard for your cancer.  It is your body and it is different from everyone else.
You might also want to speak to a counselor.  BTW we have our very own Dr. Giles  http://www.cholangiocarcinoma.org/ask.htm
Who gladly will reach out to you.  Just send him a note - he will respond. In the above link you will also find a web presentation; something you may also want to take in. 
Already you have taken a big step by reaching out to the members on this site.  Continue to do so, and I know that things will become less stressful.  One day at a time, dear Patty.
Hugs,
Marion
P.S. Can't wait to see what others have to say

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: HI

Hi Patti,

Ah, yes the dreaded scaxiety. I think everyone gets it and it is the most gut-wrenching, frightening feeling. It's because such a big part of our future depends on the scans. This is how we handle it: If it is good, that is awesome and we celebrate. If it is bad, we dig deeper for more strength and fight it. We have had bad scans with Lauren, and we are devastated for about a couple hours, cry and get it out of our system. We talk to her oncologist and come up with a new plan. I remember I told him once, please don't ever tell us there is nothing more you can do. So far, he has not! I hope so much that your scan does not show progression. Take care and please let us know.

Hugs,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: HI

I went to a cancer support group this morning with my hubby.  We were very blessed by being there.  It is so good to talk to others who have cancer too.  They were very caring & prayed for us as we will for them.  God is the ultimate healer & He knows the number of my days.  I will trust Him for being with me on this path. 
I will be talking to the person to schedule my 'mapping' appt.  tomorrow.  Hopefully it will happen as scheduled! 
Thanks for your support too!

Re: HI

Patty...isn't it amazing the support we can receive when needed?  These cancer groups are great.  Glad you went.
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: HI

I have had a couple of nights where I wake up with what is like a bad hot flash but I get kind of sweaty too.  It lasts for a few minutes & then I am totally exhausted & weak after.  Can't figure out if it is anxiety or symptoms!  Still waiting to set up appt.  for my pre 'mapping' for the radiation treatment.  Waiting is not fun!

Re: HI

Patty...hoping for others to chime in and share their night sweats stories with you.  It is not an uncommon occurrence.  Your doctor will have an explanation for this.  Should however; you have a fever then you would want to make sure to call the doctor immediately.
There is a tendency, and understandably so, to fear that any change in the body is related to this cancer. It is amazing what our mind can do.
Hang in there and try to relax. 
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