Topic: Mom recently diagnosed

My beautiful, 62 year old mom was recently diagnosed with CC - although we weren't given a stage, just that she has a 6 cm tumor on her liver with mets to regional lymph nodes.  The surgeon we met with said that surgery was not an option because the cancer was in her lymph nodes.  According to him, there would be no survival benefit to the surgery since it has spread.  She is seeking a second opinion, however, with Johns Hopkins with a doctor who specializes in bile duct and liver cancer.  I've been trying to gain as much information as possible about this horrible cancer - and I guess I've been looking for hope as much as information.  My mom has always been healthy - she still feels great since having two metal stents put in about 6 weeks ago.  This is just an absolute nightmare - her and I have always been so close.  I'm trying to be strong for her, as well as for my three year old daughter who loves her grandma so much.  Thinking about the future and what's to come really scares me.  I've also been trying to convince my mom to fight with everything she has...she has been offered very little hope by this surgeon and by what she has read on the Internet, that she doesn't want to try chemo because she feels this is a losing battle.  She is also afraid of losing her quality of life, which I can understand, but I don't want to lose my mom.  Any experiences, advice, anything?

2 (edited by PCL1029 Mon, 29 Jul 2013 14:08:07)

Re: Mom recently diagnosed

Hi,

I am a patient of this disease for 53 months now, and I am 63.Last June was my 3rd recurrences of this disease and the surgeon who performed my last 2 resections(2009 and 2011) ,this time said no resection due to the location whether than the lymph node involvement . He recommended me to seek interventional radiologist consult and my two tumors in the liver was burn off by microwave and PEI for the lymph node. There are other procedures for tumor of the size of the large kind, like chemoembo, IRE?or radioembo by  interventional radiologists.My suggestion is listen to John Hopkins and then ask them what alternatives they can provide besides surgery. If possible, try to  ask them to do a" next generation gene sequence" from the tumor tissue for your mom.That way in the future, when a new immunotherapy or targeted agents come around in the future, you will have a better chance to choose the more specific agents to treat the tumor and less the waste of time and expenses to search for the effective treatment.

Clinical trials should be consider as an option too.Look at the top bar of this web site under cholangiocarcinoma and click clinical trial to have a sample to look into .

To treat this disease as a chronic disease is not a bad idea, and keep uptodate of the current knowledge and development besides surgery(ie: like in radiology and chemotherapy, targeted therapy and the newly development of immunology) is essential to prolong the survival of this disease.

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: Mom recently diagnosed

Dear moneil, welcome to the best little  club in the world that no one wishes to join. I am very sorry to read about your wonderful Mom. John Hopkins is good and you are ahead of us as we would have suggested a 2nd even 3rd opinion. So, you did your job well. Keep trying to stay strong as attitude and strength is what will get you all through this crazy journey. Please keep reading about what Percy posted he is up on the latest. Yes, this is a total nightmare which is why it's very important to be ONCS who have much experience with CC. Listen to what they say at Hopkins and Mom can make a decision then. To chemo or not is one of the biggest decisions a patient has to make. Do you have an appointment yet for Hopkins? Please keep us posted, we do know what you are going through and we DO 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.

Re: Mom recently diagnosed

moneil...welcome. I agree that surgery - the preferred form of treatment for this disease - should be investigated to the fullest.  This may take some research and outreach to numerous physicians "very" familiar with this cancer.  Personally, I believe that this cancer (often times) warrants a multidisciplinary team:  oncologist, surgeon, interventional radiologist.  Much information will be heading your way; it might be best to take notes and please know that your Mom is entitled to her medical records. This is a good time to start gathering everything and anything pertaining to your Mom's diagnoses.   
Most of all don't give up on hope that your Mom has options for medical treatments coming your way. 
Please keep us posted - we care and 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: Mom recently diagnosed

Thank you all so much - for the information, but also for the encouragement and support!  I'm trying to keep her spirits up, as well as mine - as you all know, it's such a roller coaster of emotions.  Lainy, no she does not have an appointment yet, but Dr. Choti's administrator spoke to my mom today and is going to call her tomorrow for appointment information.  My mom called the surgeon we met with here in Detroit and requested that he release her medical records to Johns Hopkins.  Marion, thank you, I will let her know.  Again, thank you so much - it's so nice to communicate with people who understand.  I will keep you posted. 

Michelle

Re: Mom recently diagnosed

Hi Michelle,

I'm so sorry to hear about your mother, but glad you are seeking expert opinions. Affirming Marion's post, I would explore the surgical option to the fullest. I am not a physician, but from my own experience and that of others, I disagree with your first surgeon. If resection (and lymphadenectomy) is technically possible, it will positively affect outcome. It will at the very least significantly extend time and quality of life, and provide a healthier foundation for fighting this chronic disease in the future.

Best wishes, Mark

Re: Mom recently diagnosed

Hi Michelle,

Welcome to the site. Sorry that you had to find us all and I'm sorry to hear what your mum is going through right now. But glad that you've joined in with us here as you are in the right place for support and help and you can expect loads of that from everyone here.

You have so done the right thing for your mum here in seeking as much information as possible as the better informed you are the better the decisions you will be able to make when it comes to things such as treatments etc. And you have also done the right thing as well in looking to get a second opinion re surgery for your mum. I so hope that that goes well for you and there is a ton of info here on the site re surgeons etc.

Please do not give up hope. I know that this is such a tough time for you all and I know also that there is a lot of pressure on you personally. I was there with my dad so I know what you are going through right now. And please know that we are all here for you as well. Keep us updated on how everything and know as well that we care.

My best wishes to you and your mum,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Mom recently diagnosed

Thank you, Mark and Gavin!  As much as I wish that nobody needed to be on this website and fight this terrible cancer, I'm so glad that I have found it and have been able to connect with all of you.  It truly has provided me with not only information, but I also feel a real sense of support through all of you - and this has brought me a degree of comfort, hope, and strength. 

Johns Hopkins called my mom yesterday and she is scheduling an appointment with them today.  I read on here that Dr. Choti, who I was hoping that she would be able to see, is leaving JH for a position in Texas, I believe.  So far she is feeling good, but has had horrible indigestion.  Not sure if this is a symptom of the cancer or a result of what she is eating.  I will keep you posted on what we find out. 

Again, thank you all for welcoming me and for the support and information you have provided. 

Best Wishes -

Michelle