Newly diagnosed – Please HELP

Well hello Jim. Don’t forget to let me know how your trip was. Donna, both Jim and I are patients of Dr. Kato and both are doing well. Definitely worth giving Dr. Kato a call. Good luck with everything. Thank you so much Nur1954 for following my story. Whenever someone tells me that I am an inspiration, my heart smiles. If there is one thing that I want to accomplish in life that is to inspire others. I am hoping to write a book one day and definitely do some public speaking. Finishing nursing school isn’t out of the question either. I recently designed a pendant for cancer patients & am keeping busy getting ready to launch & market the logo. It’s a very empowering symbol. I so excited to be able to begin sharing it with others. How blessed am not only to still be here, but to have an opportunity to give back. My heart goes out to everyone who is living with cancer, as well as their family & friends. It is the most difficult challenge of one’s life, but something that brings with it such rewards. Cancer has truly given me the gift of clarity and has enabled me to cross paths with the most amazing people in the world. Hey Jim, that includes you. ha ha Never take your eye off the target. Keep the focus & you will reach that goal. Hugs to all!!! xoxo

Donna, I looked at the Cooper Univ website and it may be fine as a smaller regional hospital, but CC is a very difficult cancer. You might ask the onc how many cases of CC he treats a year. I put convenience way at the bottom of the list of priorities for me.

I can only speak to my own experience with NY Presbyterian and it was great. My surgery was complicated by my age and cardiac condition, and as it turns out Dr. Kato was the only one who would take me on. I had several VT (heart attacks) events during surgery, but no harm done. The anesthesiologist, Dr. H. T. Lee was a cardiac guy prior to working on digestive diseases, and handled each event with aplomb. A 12 hour surgery and I’ve been fine since.

As mentioned above, don’t accept a single diagnosis, especially if you’re not totally comfortable with it, and be prepared to fight like a cornered rat.

Again, good luck in your quest.

Hi Donna, sorry to have to meet you on here, but everyone’s paths cross for a reason. This is unbelievable, but I was under the care of Cooper Hospital, Dr. Nancy Lewis. She had left the practice and referred me to Dr. Hageboutros. He was unable to help me & basically was only too happy when I told him I was seeking treatment elsewhere. I have heard good things about him, but honestly, for CC, I would not even bother consulting with him. No one at Cooper was ever able to help me, not the oncologists nor surgeons. My CC was pretty much localized to the liver. I had a 10 cm tumor in the liver that no one wanted to touch. I went to many, many drs and was told my tumor was inoperable. My entire story is listed under the intro section here as “My inspirational story”. I never gave up and never listened to any drs, especially the ones at Cooper. To make a long story short, I miraculously found the only dr in the world who performs ex-vivo surgery (outside the body). His name is Dr. Tomoaki Kato, affiliated with Columbia Univ in New York. I successfully underwent surgery 8 mos ago and am alive and well due to the bravery and intelligence of Dr. Kato. I do not know if he would be able to help your brother, but he wiill give you an honest answer. He believes that nothing is impossible. He is truly the most amazing person I have ever met. If you send him all reports & scans, he will let you know via phone if it is worth the trip to see him. He is extremely kind and sweet. Please look him up. If he can’t help, then I would suggest Sloan Kettering or one of the hospitals more equipped to handle CC. Cooper is NOT the answer, believe me. I recently turned 46, which seems to be the new age for this type of cancer. It used to be a disease that struck older men, but not so any more. Losing was never an option for me & please tell your brother to never give up. I would be more than happy to speak with you since it seems as though your brother lives in the same area as I do. I was seen by drs in Phila, NJ and New Brunswick without any success, so perhaps I can be of help. Having traveled down this path, I can certainly relate and offer some advice. My email is kcirucci@msn.com. Keep the chin up. I will help you get thru this, as will everyone else on this site. Remember, nothing is impossible. I am living proof of that. My new oncologist calls me miracle girl. Just believe. I look forward to hearing from you Donna.

Kim

Donna, welcome and sorry you have to join us. Time may be critical to the available options in treating cc. I live on the Eastern Shore in MD and ended up being treated at NY Presbyterian in NYC, and from my perspective with the awful disease, it was the right place, in spite of inconvenience. Long story short, I had a successful resection almost two years ago, and am still cancer free, but looking over my shoulder as each CT scan comes up. Dr. Kato was my surgeon, and it would be hard to find a more caring and skilled surgeon anywhere. CC is a tough disease, but not without hope. Dr. Kato’s forte is taking challenging cases other surgeons won’t take, but he won’t operate if there’s no chance of success, in his opinion. There is a summary under the hospitals link under my name of my experience with NY Presbyterian.

You will find another poster here, Kim Cirucci, who had a much more challenging surgery with Dr. Kato. She lives in South Jersey and her story is here under “My Inspirational Story”.

You will find, because cc is so rare, the very best care is limited to big city/major cancer centers, as there are only around 2000 cases diagnosed in the US per year.

Whatever you decide, try to get a game plan in place quickly, as time is your enemy. And be prepared to ask lots of questions. You must be a blessing to you brother, since most patients are in a state of shock and not capable of informed research. Every patient needs a good advocate, and you sound like a good one.

Best of luck and come back here with questions/concerns when ever you want. Bless you on a tough mission.

Dear Donna-I am a CC survivor, I also was stageIV and inoperable. I was blessed because when I was diagnosed I was put in the hands of Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO. I had a transplant.
I suggest you take lots of notes and ask any question, no matter how silly when talking to your oncologist. Get his opinions on transplant trials and liver resection, these are really your best options to be cured. Jim Wilde post on here about his resection and his “miracle worker doctor”, read his post. Ask your doctor about his doctor and about Dr. Chapman. These 2 doctors are the top of there field in treating CC. Get as many opinions as you need you will know when you have heard the right one. There is HOPE.
You can read my story at thetelegraph.com under christmas miracle. I am alive because of the power of prayer and one of the worlds greatest doctor.
Please call me 618-567-3247 or email me if you want to talk or vent.
Lots of prayers-Cathy jrdunnagan@gmail.com