Help!
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Dear Lainy
No I am sorry we are not in the Phoenix area. We live in the Northwest in Idaho. One of the reasons we flew to Arizona was due to how sick my daughter was at that time. It was very difficult for her to travel even that far. We thought about going to Minnesota rather then Arizona but I am glad we didn’t then. It took her a day to recover once we got there and that was flying straight through.
We appreciate your help with this. We are just unsure of how to proceed from here.
Sue (Dani’s Mom)I had surgery with Dr. T. Kato at NY Presbyterian in April 2009. Dr. Kato has done a lot of very complicated surgeries and transplants, and so far, saved my bacon. I had about 50% of the liver removed in a left hepatic lobe resection and the CC had not metastasized. So far, I’m clean except for a funky small lung growth, which may come out in May this year. The risk is proximity to the mammary artery, which was used in a cardiac bypass ten years ago.
Dr. Kato has operated successfully on many patients that were given no hope of a surgical fix. I’m sure there are some diagnoses that clearly aren’t amenable to surgery, but Dr. Kato is a very innovative and creative surgeon. Had he not been at NY Presb, there wasn’t another surgeon who who have operated on me at that hospital, for a variety of reasons … age, cardiac history, surgical difficulty, etc. All I can say, is the NY Presb Digestive Diseases Group did a heck of a job for me. franticmom, for me convenience was way down on the list of importance in selecting where to go (I live in Southern MD, about a 7 to 8 hour trip to NYC for the hospital. I would be happy to provide contact info if you’re interested.
franticmom, are you in the Phoenix area? I live in Sun Lakes if you are in AZ.
Mayo in Scottsdale is just coming into this CC but I understand doing good but Mayo Rochester MS is really the best.
Please let me know if you are in the Phoenix area!Have any of you had any experience with the Scottsdale Mayo Clinic. That is where I took my daughter for a second opinion. They told us there really wasn’t anything they could do. Just wanted to know if we should look into the Mayo in Rochester.
Cathy,
You will be very pleased with how efficient Mayo is as you will have your testing and then an appointment with the doctor the same day for results.
I had a couple of CT’s before I went there. First went to UIHC but they told me they only see 2-3 patients a year with cc so that’s why we went to Mayo. Mayo did their own MRI the day I went. All the appointments were set up by them ahead of my arrival.
Kathy
Hi Kathy… my doctor referred me to mayo and I told Mayo that when I called them. I too was surprised when my doctor did not make the phone call. I assumed that Mayo is busy this time of the year and maybe just strict with who they see.
I did pick up the referral from my doctor yesterday and will overnight to my insurance company on Monday and bug the crap out of them until it is approved. Mayo was surprised that I have not had a PET Scan, chest xray and a bone test… so I need the insurance before I go but I will make the appt…
Thank you
CathyCathy,
Are you a self referral to Mayo Clinic? I go there (out of network) but my local doctor made the referral and his office made the appointment. I’ve never had an interview over the phone or review board approval.
I’ve always been under the impression that an appointment can be made much sooner if you are referred by a doctor. I could be wrong. I got an appointment in less than a week.
The appointment was made before insurance approval. In fact, insurance approval did not come through until the night before my appointment.
Kathy, I also would love to hear more about the Block Cancer Center. I read Dr Blocks book, LIFE OVER CANCER and it is excellent. Although I am living the diet, exercise & mind/body that Dr Block describes, this option is plan C for me. Mayo Clinic first, University of Chicago second and if neither hospitals can help me, then I am heading off to the Block Cancer Center in Evanston which is only an hour away for me.
Cathy
You might want to consult with Dr. Michael Choti at Johns Hopkins in Baltimore. He has a great deal of experience with CC and is extremely knowledgeable. He operated on me in Sept. 2010 and I consider that he has saved my life, at least for now. A good man.
I am also interested in what others have to say about the Block Integrative Medical Center in Chicago. They seem to have remarkable results but I haven’t seen much discussion on this website from people who have been there, but you might discuss your daughter’s case with them.
We are sending warm, healing thoughts your way.
KathyI want to thank all of you for opening your hearts and prayers for us. This has been so difficult to deal with. It is comforting to know that others have dealt with it. We live in the Northwest and have also went to the Scotsdale Mayo for a second opinion. We have been told that surgery and transplant are out of the question. Two different chemo treatments and the tumors continue to grow and multiply. We are still hopeful but are looking at the real possiblity of losing this fight. I want to thank you for the suggestions and will look into them. Thanks again.
I am sorry to hear about your daughter. With Mayo Clinic (Minnesota), they will not do consultations over the phone. They will give you a short interview over the phone and then they take it to their review board and decide if I can have an appointment, which will take 4-5 days before they will contact me. So now I am waiting for the insurance company to ok the transfer and the doctors.
My doctor at University of Chicago told me that I need to go there since they have the best success rate and he has only seen 4 CC patients, me being the 4th. I read somewhere that UoC followed Mayos protocol for this disease and they do not. My doctor told me that they will have it in place by the end of the year, but they are not ready yet. I asked my doctor if Mayo turns me down, will he do the surgery and he said yes because I seriously would have nothing to lose.
Good luck and hugs to you both.
Cathy
Hello, My husband is also stage 4 inoperable. As well as the chemo he takes naturopathic supplements and treatments that he is responding very well to. Not everyone is open to this but I thought I would put it out there.
I can give you more information if you wish. My heart is with you. It is bad enough dealing with this with my husband I couldn’t imagine one of my children. Take care.
NancyDear franticmom, I always say welcome to our wonderful family but this time it tears at my heart. Like Nancy said Mayo in Rochester MN is one of the very best. I believe you can call them and they will advise you how to send in your daughter’s test results and they will tell you if they think they can help. We are seeing more young people with this and just do not understand it at all. Sometimes it also helps to get another opinion where you live. Always ask the ONC if he has treated many CC patients. You want one who has treated more than 1 or 2. Please, please keep us posted and we are here if you need us.
Hi there,
Welcome to the site. Sorry that you had to find us all and I’m sorry to hear about your daughter. In addition to the link that Marion has given you this link may be of use as well –
http://www.cholangiocarcinoma.org/majorcancercenters.htm
If we can help in any way then please feel free to ask any questions at all and we will all do what we can to answer them and help in any way at all. And please keep coming back as you will get a load of support from us all.
Best wishes,
Gavin
Mom…Following Nance I would also like to welcome you to our site. This link will lead you to some of the physicians and treatment centers our members have had experience with.
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=27669
Please, continue to reach out to us….we are here to help.
All my best wishes,
Marion
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