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

CindiS…..what a wonderful way of giving back to the community, I congratulate you on your efforts of connecting cancer patients with other individuals.
The Cholangiocarcinoma Foundation will be rolling out a mentoring program as well. It was spearheaded by a Andy, who lost his wife to this cancer, and who saw the real value in one-to-one connections with others alike in a more intimate setting than what this board can offer.

Congratulations on your incredible success with beating this cancer and having the heart and inspiration to help others in a most kind and caring way.

You and your husband are wonderful people and have my greatest admiration.

Hugs,
Marion

CAlicea….thanks for sharing this excellent news with us. Good advice coupled with personal experience is the absolute best our members can share.

I wish for continued success and please keep the e-mails coming.

Hugs,
Marion

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 http://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.

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

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

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.

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

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.