Topic: Is it worth it to relocate for treatment at MD Anderson?!

My name is Nikki.  My father Jim was diagnosed with CC in September of this year at the young age of 57.  He was admitted to the hospital (originally Winchester Hospital in Winchester, MA then transferred to Beth Israel in Boston, MA) because of severe stomach pains, weight loss and jaundice.  After many days of testing, it was discovered that he had a 4 cm tumor on the upper portion of his bile duct (which extends down).  He was scheduled for exploratory surgery on October 16th.  October 16th was the worst day of our lives.  We patiently waited in the waiting room for what we expected to be a 5 1/2 hour surgery.  When the surgeon came out after only a short hour, we knew it was not successful.  The surgeon discovered that the tumor had intruded the gallbladder, the bottom of the liver and wrapped itself around the hepatic artery.  Because of the involvement of the hepatic artery, it was too risky to remove the tumor.  The good news is that it has not metastasized.  We have an appointment for a consultantation at Dana Farber in Boston on 11/6.  We are lucky to live only 20 minutes from the city.  We do not want to start any treatments before we weigh our options.  We had contacted both the Mayo Clinic in MO and Barnes-Jewish in IL, but unfortunately he is not currently a candidate for a liver transplant because of the size of the tumor and it's complexity.  We are now looking to take him to the best hospital in the US for treatment in hopes and prayers that the tumor shrinks enough to either have him qualify for a transplant or a resection.  I think the best thing we can do at this point is have consultations with both Dana Farber (Dr. Thomas Abrams) and MD Anderson (Dr. Javle) because it won't hurt to have more than one opinion.  I have also read wonderful things about Dr. Kato at NewYork-Presbyterian Hospital.  I would appreciate anyone's insight on MD Anderson!  I have been told that their techology and treatment is sometimes 5 years ahead of other centers.  Thank you so much for reading!

Daughter and biggest supporter of the strongest Dad on earth!
"Attitude is a little thing that makes a big difference."  ~Winston Churchill
"A happy person is not a person in a certain set of circumstances, but rather a person with a certain set of attitudes."  ~Hugh Downs

Re: Is it worth it to relocate for treatment at MD Anderson?!

Dear Nikki, welcome to our extraordinary family but sorry you had to find us. I am so sorry about your Father's aborted surgery. Most of the Surgeons just don't know until they go in as to what they will really find. As for the hospitals you mentioned my own opinion is that I would go to Dr. Kato as he is so much closer. You are going through enough without uprooting to move.  Honestly, the top hospitals and Doctors are pretty much on the same high level. If you go to Dr. Kato you can always decide after to send the LABS and tests to Dr. Javle for a 3rd opinion.  Concentrate on the good news, NO METS! Sounds like you have done your homework as well. Please keep us posted as we truly care and I know you will get some more suggestions on the Board, soon.

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: Is it worth it to relocate for treatment at MD Anderson?!

I am not treated at MD Anderson, but others are.
I did get another opinion at Mayo and was super impressed by them.

Take care,

Susie

Re: Is it worth it to relocate for treatment at MD Anderson?!

Hi Nikki,

Welcome to the site. Sorry that you had to find us all and I am sorry to hear what your dad is going through. But glad that you've joined us all here as you will get a load of support and help from everyone here. And I am sorry to hear that your dads surgery did not go as you all would have hoped. But unfortunately, your dads experiences of starting surgery and it having to be stopped are quite common. This cancer is very difficult to diagnose and so many people have been through what your dad has with the surgery only for theirs to be stopped too once the surgeon sees what is happening. I know that won't make you feel better and I can so understand why the 16th October was the worst day of your life. I can still remember what I felt like when we were told about my dads CC and that it was inoperable from his diagnosis.

Please do not give up hope now and try and stay positive if you can. No metastisis is good news and the hospitals that you are talking about are very experienced in dealing with CC patients. I know that all of this is so hard to deal with and that your head is probably still spinning right now, but you are doing an excellent job in being there and helping your dad through this. And please know that we are all here for you as well and so know what you are going through right now.

My best wishes to you and your dad,

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: Is it worth it to relocate for treatment at MD Anderson?!

Nikki...a warm welcome to our site; the one no one wants to belong to and yet is glad to have found.
I wish the best of luck with your upcoming appointment at Dana Faber.  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: Is it worth it to relocate for treatment at MD Anderson?!

Hi,
Have you try to contact Dr. Kato for a 2nd opinion. If I were you, I would. The reason is simple, he likes to challenge himself on difficult cases.
Surgery is  the only possible cure for this disease;systemic chemotherapy  and or targeted therapy are currently not.
MD Anderson is renown for systemic treatments and clinical trials, if this is what you are looking for, then go ahead; but make sure that is what you want.
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: Is it worth it to relocate for treatment at MD Anderson?!

Thank you all so much for your kind words and welcoming.  We have our appointment with Dana Farber tomorrow and will let you know how it goes. I have reached out to Dr. Kato's office and do plan on sending him the records.  I have also reached out to Chris Sonnenday at the U of Michigan.  My head is spinning trying to figure out the best approach.  I have also contacted the CTCA, but I am nervous because I haven't read a lot of positive posts on this site about this treatment center.  It seems as if they have a lot of different techinques that don't seem to be offered at other places which is promising. 

I understand surgery is the way we want to go, but I do know that we need to somehow shrink the tumor enough so that it detaches itself from the hepatic artery and moves away from the blood vessels before this can happen.

Does anyone know if Dr. Kato strickly determines whether surgery is an option at this point in time?  If it's not in his eyes because of the risk, would he tell you to consult your own oncologist and then revisit the situation with him should your situation change?

Thank you all!
Nikki

Daughter and biggest supporter of the strongest Dad on earth!
"Attitude is a little thing that makes a big difference."  ~Winston Churchill
"A happy person is not a person in a certain set of circumstances, but rather a person with a certain set of attitudes."  ~Hugh Downs

Re: Is it worth it to relocate for treatment at MD Anderson?!

Hi Nikki,

Dr. Sonnenday is the first person my daughter, Lauren saw at U of M. He is a great liver surgeon and wonderful person. Hopefully, one day Lauren will be able to have a resection. I know he will want to help your father if he can. I cannot say enough good things about him. I have heard things about Dr. Kato, but don't feel qualified to say anything. I'm sure others will be along that can answer your questions. If you wish to ask me more questions about our experience with Dr. Sonnenday and U of M  please e-mail me . All the best to you and your Dad.

-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: Is it worth it to relocate for treatment at MD Anderson?!

Dear Nikki, Kato/Sonneday are excellent choices. Not sure about CTCA. I don't think either one would turn you away should they feel they want to wait to see if there are any changes. I don't know if they can use Cyber Knife but my husband had that to shrink a tumor, although his was located in an easier place. Hoping for the best for you and soon!

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: Is it worth it to relocate for treatment at MD Anderson?!

Nikki,

I am currently under treatment at M.D. Anderson for CC.  If you need anything at all, advice about the hospital, city, my doctor, etc..  Just let me know.  It's a wonderful place.

Best,
Kelly

11 (edited by hisprazr Wed, 16 Oct 2013 01:12:03)

Re: Is it worth it to relocate for treatment at MD Anderson?!

Nikki, My husband is a patient at MD Anderson currently with a very large mass that is unresectable.  We kept hoping that it would get small enough to do surgery.  But the chemo quit working and the amount of radiation they would have to use would have damaged too much tissue for surgery...besides there it is in both lobes and the caudate area which also makes it difficult to treat.  With that said, I know that there is a clinical trial that has just gotten approval in later stages.  MD Anderson is involved with MASS General in this and DanaFarber as well as a couple others.  From what I can understand.  MD Anderson and Mass General are leaders in the treatment of this type of cancer especially in difficult to treat cases.  They have been wonderful to us and currently have his scheduled for a surgical procedure to place an alloderm spacer between the liver and stomach/small bowel to protect them while they hit him with massive doses of proton therapy.  They are approaching this with curative intent and so far have found this approach to be as effective as surgery. This is the information they gave us.  Personally, I like the team approach where they take the case before a whole team of specialized doctors who review and all put in their opinions on the best plan of attack in a case.  What you end up with is a concensus of all of their knowledge reaching the best process for the particular patient.  We love MD Anderson.
But, we also live about 75 miles away only.  So, that makes a lot of difference in these decisions too.

Re: Is it worth it to relocate for treatment at MD Anderson?!

I haven't logged on to this site in a very long time because we have just been getting on with our lives after very successful treatment of cholangiocarcinoma for my husband almost 6 years ago. 

Our surgeon at M. D. Anderson was Dr. Jason Fleming, and Dr. Javle was his oncologist. 

We live only 40 miles from the hospital, so for us it was a no-brainer to go there.  However, I cannot praise the whole hospital staff enough for the whole experience.  We never once felt as if we were an anonymous patient, and that we were an integral part of the whole team.  We were listened to, and our thoughts and desires were always included in the process.  I'm not saying we weren't occasionally overruled, but it was NEVER a case of being talked-down to.  Now that being said, I must clarify that my dad was a hospital administrator, my mother was a secretary to the dean of a nursing school at a university, my sister is an diagnostic RN, and we had a brother who was paralyzed from the neck down in an accident in the Viet Nam war and then lived at home with us for 28 years before passing from cancer himself.  I have no hesitation letting medical people know this about me, and I do think it does change how we are treated.  I don't pretend to know as much as the doctors or nurses, but I do let them know I'm not totally ignorant about medical stuff and that I do my research and ask intelligent questions. 

To anyone researching any hospital for themselves or their loved ones, I would say this: research, research, research.  You may have to do this very fast, so thank heaven for the internet!  If you are facing a Whipple, you want the place and/or person who has performed the most, within the constraints of your budget, ability to travel to that place, and support system in place for you and your family.  There will be differences in opinion and methods of treatment among these doctors, because they are different people just as we all are.  You may have to ask questions - so ask!!  It won't offend them.  And if it does, then decide if that matters to you. 

While the medical treatment is the primary concern, don't overlook the support system in place for the caregiver and family.  Some places are definitely better at this than others.  And a caregiver who is overwhelmed and burning out from the demands now on them can't take care of the patient well. 

Since going through our journey, Richard & I have become certified counselors with CanCare.  It is a non-denominational, faith-based organization which matches a cancer patient (any kind of cancer) with someone else who has had/is still dealing with that exact kind of cancer.  They may still be battling the disease, but usually are much further along the road on the journey than the patient.  What they do that is so special, though, is that they will match the caregiver with another caregiver, too.  It is so wonderful to have someone to talk to who has been in your shoes and is still standing!  Not to mention just having someone to talk to.  Your family and friends love you and want to help - and many do, in countless ways - but they can't understand completely the path you are walking.  Being able to talk to someone who has been there, and come through, is a lifesaver.  CanCare is free and online at www.cancare.org if anyone is interested. 

I just can't get back here as frequently as I would like, so if there are any questions I can answer for anyone, please email me at cinschmerb at gmail.com.  (Written this way instead of traditional way in order to avoid scammers.)

God bless.