Welcome to the amazing family no one wants to be part of. The fact that you are here likely means that you or someone you love has been diagnosed with cholangiocarcinoma (CCA). You're scared / angry / confused. Your life has changed forever. But you have a lot to say about what the changes are and what can happen. You will be faced with many decisions. Do this? Do that? Do nothing? And after each decision there will be more. The participants of these Discussion Boards are here to listen to you and we will provide our experiences and thoughts. But, we are not doctors – we cannot provide medical advice. We cannot make your decisions for you. This disease puts you on a roller coaster. Believe it or not, there are highs that will take your breath away. And the lows will almost crush you if you let them. Call out to us for help when you need it. Hope, faith, and prayer help. This is a disease, not a death sentence. We don't come with an expiration date. (KrisJ, KrisV, Lainy) “Cancer will not run my life! Cancer will not define me!” Judy Nemes in “Coping with Cancer” September 2013.
This started out as a general summary of what I know about CCA, pulling together thoughts from others. But there must have been a lightning strike, and like Frankenstein's monster, it lives! But I don't know what to cut. Please comment on how I can improve this.
If you've checked the Internet you will have found scary numbers associated with survival. Remember that they are based on old data. Advances are being made frequently, improving treatments and extending life expectancy and quality. You have more control than you might think. Besides (and maybe even more important than) your medical team is your attitude. You have to develop a positive attitude as soon as you can – like starting now. Cholangiocarcinoma sucks. Damn right. Accept it. Get over it. Explore your options. Do all those things you should be doing anyway – exercise, eat right, get medical help. Get on with your life. It may not be as long as you thought yesterday it would be, but it's what you've got. Make the rest of your life the best you can. If you've got it, done it, seen it, heard it, read it, chances are one of us has also. Post a question or a comment or vent or ask for help. We listen and will do our best. That's what families do.
Overall outlook from what I understand. Everyone is different and not all tumors respond the same. Some people are more tolerant of chemo than others. I am very tolerant and grateful. Others have nasty side effects, like nausea. The best results occur when the cancer has been diagnosed early, before metastases have occurred and the tumor is small. Surgery or liver replacement is a solid option, followed by adjuvant therapy and possible more surgeries. If the cancer has moved to other organs, example lungs and lymph nodes, you might be receiving palliative care. The objective of palliative care is to improve the quality of life. You might have to choose quality of life or length of life or some balance. This will likely be the hardest decision you will ever have to make. We can share our decisions with you – they run the entire spectrum. Most people agree that there is no wrong decision.
Here is a link to a PowerPoint and Webinar presentation “Update on Cholangiocarcinoma – What we have learned from the International Hepatobiliary Neoplasia Biorepository” from the Mayo Clinic sponsored in part by the Cholangiocarcinoma Foundation.
http://cholangiocarcinoma.org/webinar-u … epository/
Or go to the Foundation Home page and click on the light bulb on the bottom of the page - “There is an URGENT need for Research Participants”. The links are there also. (More below.)
Quick checklist of things to do.
Keep a journal of who you talked to, date/time, subject, and specifics. Same for tests and treatments. Keep copies of all tests and doctors notes. It's easier to start this right away than to go back and get it. Keep them in a computer file as a pdf record. Write down what you are feeling and thinking.
Check the expertise of your medical team. This is a relatively rare form of cancer. Not all doctors have dealt with it. Not all oncologists have treated it. Get specific information on their knowledge. Good doctors will understand and answer your questions. Be wary of doctors who do not. In any case, strongly consider getting a second or third opinion. This is where your journal and notes will come in handy.
Use the Search feature listed at the top. You can look for specific medical centers, doctors, symptoms, treatments, and a whole host of other items.
Find out all you can about the disease and treatments. There are Discussion Boards called New Developments, Clinical Trials, and Websites which provide lots of info.
Check out the Boards Good News / What's Working and Members' Cafe. The latter is a great place to let your hair down, not just about cholangiocarcinoma but about the stuff life is made of, like the World Cup and loved ones.
Register for the Discussion Boards. It allows you to actively participate and ask questions. If anonymity is an issue for you, don't include your last name.
In your posts, provide all the info you are comfortable with. Symptoms, diagnoses, age, treatments, medical centers, doctors names, dates, CA 19-9 and alkaline phosphatase numbers, location(s) of tumors, etc. The more you share, the more we can help. This will be one of your decisions.
Get the 100 Questions & Answers About Biliary Cancer eBook. A free e-Book can be downloaded to a computer, iPad, or e-reader such as Kindle or Nook. Instructions can be found under About the Foundation / Foundation News / Printed Resources. There is a section in the eBook on terminology that is also valuable.
Google your own state for more info on these next two documents.
Durable Power of Attorney for Health Care. A health care power of attorney (or durable power of attorney for health care, sometimes known as a DPOA or health care proxy) is a legal document that authorizes another person (your agent) to obtain your health information and to make health care decisions for you. You can allow your agent to get your health information and communicate with your health care provider at any time, but health care decisions can be made for you only if and when you cannot make health care decisions for yourself.
Living Will Declaration. A living will is a legal document you can use to set forth your directions about the use or non-use of artificial life-sustaining support if you become terminally ill or permanently unconscious.
Complete the CCF International Cholangiocarcinoma Patient Registry. Link:
http://cholangiocarcinoma.org/professio … -registry/
Or go to the Foundation website Home and click on the link with a branch with leaves “Learn more about the International Cholangiocarcinoma Patient Registry”.
It takes 15-30 minutes to complete. Make sure you have as much information as possible before you start. There are very specific questions about your (and your family's) history.
From the Registry (ICPR) website:
“The International Cholangiocarcinoma Patient Registry represents a collaborative effort and opportunity, for The Cholangiocarcinoma Foundation, to connect with our larger global patient community to further knowledge of cholangiocarcinoma.
The Mission of the International Cholangiocarcinoma Patient Registry is to assist, accelerate and support research into earlier and more comprehensive diagnosis; life-extending therapies and treatments; new and repurposed drug trials; protocols and medications addressing debilitating treatment side-effects; possible end stage complications; and ultimately efforts leading to a cure.
The Vision of the International Cholangiocarcinoma Patient Registry is to collect patient information about the incidence and prevalence of cholangiocarcinoma and related disorders. The International Cholangiocarcinoma Patient Registry will also assist in the screening of appropriate participants for research studies and clinical trials.
Patients who may be appropriate candidates for studies and/or clinical trials will be contacted by the International Cholangiocarcinoma Patient Registry Coordinator and provided with the contact information. If the patient is interested in participating in the research he or she may then then may contact the study/trial coordinator for more information.
Researchers applying to use the encrypted data maintained in the International Cholangiocarcinoma Patient Registry for data analysis, and/or to help identify potentially appropriate patients for clinical trial recruitment, may submit a Letter of Intent (LOI) to the International Cholangiocarcinoma Patient Registry Coordinator for review. The LOI should provide an overview of the proposed research or trial synopsis.
Our Values are centered on patient privacy and our commitment to confidentiality. Participation in the International Cholangiocarcinoma Patient Registry is entirely voluntary. All patient information will be encrypted, de-identifiable, and maintained in a secured database. Participation in any research study and/or clinical trial is also completely voluntary and at the discretion of the patient.
For more information please email: firstname.lastname@example.org or Donna Mayer, Executive Director, at email@example.com”
Participate in the Mayo Clinic study. There are a few discussion threads on this that are easiest to find with the Search tool. One is under General Discussion – Mayo Research Study. There is an information packet to complete, a request to release medical information, and a request for biopsy samples if available.
Or go to the Foundation Home page and click on the light bulb on the bottom of the page - “There is an URGENT need for Research Participants”. The link is there also.
http://cholangiocarcinoma.org/professio … nic-study/
Complete form at the bottom of the page. You will be contacted by the Mayo Clinic.
Not all doctors are knowledgeable about recognizing the symptoms of and treating cholangiocarcinoma. There are tacky/bad/inexperienced doctors. Members have shared their bad experiences (and also praised the best). If you suspect that you are not getting the right help, come here as soon as you can and ask for advice. The most likely recommendation will be to get second opinion with additional specifics. You will hear that recommendation over and over.
There are members world wide. Someone is online most of the time.
Final notes: First, congratulations on getting to the end. Second, there are true heroes and saints on this site. Life has thrown them a high and inside screwball and they don't know if it's going to break, but they hang in there. Some have gotten hit, some more than once. But they hang tough. As Tug McGraw said: “Ya Gotta Believe.”
The information expressed is not medical advice. The discussion boards are not intended to replace the services of a trained health professional or to be a substitute for the medical advice of physicians or other healthcare providers.