Topic: Seeking Any Advice

Hello Friends,

I am so happy to have found this site.  My father, whom I love dearly, has just been diagnosed with cc.  I am unfamiliar with the terms at this stage, but they were unable to open the obstruction with the less-invasive procedure (they tried twice).  His bilirubin is coming down, and they will be able to do surgery next week.  They say that it is in a good strategic location for them to remove it, and they haven't seen any more tumors so far in the ct scans and so forth.

I would like to know what is considered the leading hospital and/or research organization for this disease in the US?  I want to make sure that he gets the very best treatment, no matter what it takes.  Also, any other general advice you have for me is greatly appreciated.  I am very thankful to be here.

Ann Marie

Re: Seeking Any Advice

Anne Marie,

I wish there was one particular place that had the best surgeon, oncologist and naturopaths in the nation for cholangiocarcinoma.  Unfortunately, while there are many who are good or excellent.  I don't know that there are many who specialize "particularly" in cholangiocarcinoma - there just aren't enough patients.  Many of the larger institutions who say they specialize in cholangio see about 65 cholangio patients a year - compare this to statistics on other forms of cancer they treat (this is a drop in the bucket) - also many of the larger facilities are much more restricted on what they will try - they appear oft times to treat cholangio much less aggressively. 

This is why there isn't a lot of research, this is why we have to rely on the research of other hepatobiliary cancer information to infer what we hope will work with cholangio because there just aren't enough patients.

You will see as you read through the blogs and in the discussion forums many doctors and surgeons are suggested.  I have probably talked with no less than 8 surgeons who are the best in their field - ofcourse they are all in the same field.  I think you have to talk with people, you have to ask lots of questions and then you have to make the decision that is the best for your family.

Good Luck!  Let us know what you decide.

Re: Seeking Any Advice

Hi Stacie, thanks so much for your reply.  I am very nervous about having the surgery here in Jackson, Miss.  I know how critical it is that they remove it all, and I don't know how many (if any) of these they have done at the hospital we are using.  Unfortunately, I don't think I am going to have much say in the decision - my parents are just trusting the local doctors they have spoken with.  I wish I could load them up in the van and drive straight to M.D. Anderson, but I know that is not realistic.  I am the only one in my family that has researched this disease, and they are not aware of what we are up against yet. 

Thanks again for your support, and may God bless us all.

Ann

Re: Seeking Any Advice

Hello all,  We just found out today that my dad's cancer cc is spreading.  We we were initially told that the cancer was contained within the tumor that was just beneath the liver, however, the vessels have fused around the tumor.  He just had 2 quarts of fluid removed and they found cancer cells.  They scheduled him for chemo this Wednesday 11/22.  We were told it is an aggressive cancer and he may only have several months.  The chemo will take place at NYU medical center in NYC.  We also have another doctor which performed endoscopic surgeyr last week to replace stents with metals ones.  He is affiliated with Lenox Hill hospital also in NYC.  Apprently there is a new treatment that he is familiar with that we just found out would be covered by my dad's insurance.  Unfortunatly, I just received this information today (Monday) and he is already scheduled for chemo in two days.  I hope to reach his doctor at Lenox Hill tomorrow, which might be difficult as he is very busy lectoring as well.  I'm afraid I will not be able to get this info in enough time to have both doctor discuss and decide on the best treatment.  I'm afraid that if the cancer doesn't do him in soon...the chemo will.  Is chemo the way to go?

Re: Seeking Any Advice

That's a tough question.  I'm not sure what the right answer is.  I think there are only a few options.  One, is that you do the chemo and it shrinks your tumors or metastatic cancer enough that you become a candidate for surgery (this is rare).  The other is that chemo it is used to give you more time while you search out other alternatives. 

Our oncologist has always been very clear with us that modern medicine, chemo - can not cure this cancer.  Now, that being said - there are a lot of new drugs out there and a lot of new ones coming on line all the time. 

Personally, I think chemo can work to some degree, but it's got to be in conjunction with other targeted drugs as well i.e. Avastin, Tarceva, Erbitux - these give the chemo a boost and with cholangio you need all the boost you can get.

I also do not believe that you can beat this with modern medicine alone.  I think cholangio calls for a total life change.  Complete change in diet, change in thought process, change in almost every thing that affects your body.   

You can kill the cancer with chemo, but in the end you have to stop doing the things that caused the cancer in the first place.  Unfortunately, we don't know exactly what those things are - but we do know (from many studies) that sugar makes cancer grow - the obvious answer is not to eat anything with sugar in it.  We also know that people who exercise have a better outcome - so you've got to exercise.  We know that many holistic things greatly benefit those who have cancer, so you've got to seek out some of these things and begin applying them.

This is a very complicated cancer and because there aren't very many studies we sometimes feel like we are stabbing in the dark, hoping to come up with the right combination that will make this beast go away. 

But, we just keep stabbing away and one day someone on this website is going to come up with the right answer or find someone who has the right answer - won't that be a great day!

Re: Seeking Any Advice

Esposij - I'm also in New York and my mother is getting treated at NYU - can you tell me what the new treatment is that you heard about, at Lenox Hill? Also, I would love to share my impressions of NYU with you and see if you have the same complaints (and some positive things!)  Our doctor is Howard Hochster and he's supposed to be the cutting-edge guy with this cancer, but I personally hate him and want him dead because he has such a cold and uncaring manner. I'd be interested in learning about any better doctors or treatments in this area, if they're working for you. You can email me directly at dotbaumann@yahoo.com - my name is Joyce - or you can post here, if you'd prefer.
Thanks and best of luck to you!!!

7 (edited by Sara Thu, 28 Dec 2006 08:19:09)

Re: Seeking Any Advice

jmoneypenny - I highly recommend you change oncologists if your mom is not happy with the current doctor.  This is a team effort, and y'all should definitely be on board with everyone in your team.  And this should be an "easy" switch because you have Sloane Kettering in New York - I guarantee there will be at least one doctor focused on CC there. 

This is a scary cancer, and it's so important to find the right oncologist to guide you through the treatment options, both physically and mentally.  Not all doctors work for all patients.  Dr. Hochster may be a great option for some, but is obviously not working for you.  It is ok to switch.

30-something caregiver

Re: Seeking Any Advice

Hi Sara,
Yes, we are planning on switching doctors, but my mother really doesn't mind Dr. Hochster too much - it's ME. I'm just taking out some of my anger at this illness and focusing it on him, because he seems to have no sympathy and keeps my mother waiting for so long and she's so weak it infuriates me. He is supposed to be a great specialist, and he IS very knowledgeable where others were clueless, but we're going to switch soon - one more opinion, and then hospice if there are no new and non-debilitating treatments available. I didn't mean to come off in such a hostile tone - but I find myself very angry at the medical establishment in general and even at just regular healthy people because I'm so upset about my mother's condition - a normal part of grieving, I've read, but I'm doing it early.

You're absolutely right about working with an oncologist that you feel comfortable with - and we're indeed lucky to have so many great cancer care centers in this area.

Re: Seeking Any Advice

Joyce,

I'm sorry to hear your mum is having to deal with this disease.  I can understand how you feel about finding a sympathetic dr, we have met good, bad and indifferent drs along the way since my dad was diagnosed in July 05.  It is bad enough having to fight this beast without having to deal with negative and uncaring drs,  Attitude and communication in a supportive and constructive manner is so important.  I would not be afraid to tell this onc that his attitude is hurtful and unacceptable. 

best of luck, Jules