Why a 3rd & 4th Opinion is Very Important!!
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Kris….congratulations on your “new birthday”. I am looking forward to your upcoming posting.
Fingers are crossed for a successful surgery followed by a quick recovery.
All my best wishes,
Marioncathy…. Wow…You are the first with this syndrome. I pulled up a link for others to read: http://www.ncbi.nlm.nih.gov/pubmed/9058121
I am absolutely thrilled for you and I hope for this pesky wound to heal quickly.
Cathy….when you are feeling up to it would you mind repeating your posting intermittently? It is a poignant, first-hand story and it will have an impact on those patients newly diagnosed with Cholangiocarcinoma and confirms the necessity of being tenacious about the consultations with several specialists familiar with Cholangiocarcinoma. And, thank you for the kind offer of wanting to volunteer within this organization. It is greatly appreciated. When you are able and ready to do so please, use this link to sign up
http://www.cholangiocarcinoma.org/volunteer.htm
But, first get better, real soon.
All my best wishes,
MarionKris, I am praying and wishing for great success for you on the 19th. I love your attitude and know that we are all thinking and caring about you!
Cathy:
Thank you for sharing your story. I agree that a 2nd, 3rd or 4th opinion is very important. I was sent to an oncological surgeon who knew immediately that this was out of his league. He referred me to one of the top rated liver specialists in the Philadelphia, PA area. I disliked the surgeon, but was willing to listen to him because he is supposedly one of the best in the area. After over 1 month of tests, he changed his views on the success of surgery. When I first met with him, he thought it would be a 90% success rate. After the month of tests and waiting, waiting, he lowered his view to 60% success. I did not like those odds, so went to Memorial Sloan Kettering. Dr. Fong said I would have never lived thru a surgery because of the placement of my tumor, and has suggested a hepatic liver infusion pump. We are going to try to shrink the tumor, and the pump surgery is Tuesday the 19th.
If I had stayed with the “good” local Philadelphia, PA surgeon, I would have died on the table today. So today is my new birthday! I hope in a month or so to be able to blog onto the “good news” section with wonderful news!
Good luck on your journey.
KrisHi Cathy, What great news!! Funny to think having a syndrome is great news but it’s better than the alternative! Here’s hoping others will find they have this, too! I read about it and they do say it is often mistaken for cholangiocarcinoma or pancreatic cancer.
What a relief! So glad you are now recovering well. We love success stories. Thank you for sharing!
Take care of yourself!
NancyHi Cathy,
Wow! That is quite some story and thank you so much for sharing it with us all. I had never heard of Mirizzi syndrome either, so again, thank you for sharing that also. I am very glad to hear that you are doing so well after your surgery and I wish you a very speedy recovery indeed.
My best wishes to you,
Gavin
Cathy….So very happy for you…a truly uplifting story with a very important message..have an advocate or be your own advocate….my brother in law once told me something I have never forgotten….he told me there are Doctors who got A’s in Med School and Doctors who received D’s in Med School still both have M.D. after their names….and same goes for Lawyers…you obviously found some Doctors who got A’s…I wish you a speedy recovery and thank you so very much for posting your great news!!
Hi Miracle Lady and kudos to your Doctor who told you to go to Mayo. So glad to hear your doing so well and wishing you a speedier recovery. Those open wounds can be real tough. Please keep us posted on your progress and I am so very happy for you.
Cathy
Thanks for sharing your experience.
Mirizzi syndrome…..never heard of it…..I’ll have to google that one.Gerry
Cathy:
I always knew it, but am very glad that you were able to prove it!! Miracles do happen … congratulations. Hope everything goes well and I agree, everyone in this organization and on this site are outstanding and caring !!!
CherylHello Everyone, it has been a few weeks and here is finally my story with a happy ending. Sorry in advance for this being so long….
At the end of December 2010, I woke up with jaundice and went to the emergency room of a hospital that is local to my home, suburb of Chicago. After numerous tests, I was told that I had cholangiocarcinoma, bile duct cancer.
After talking to a friend who is a radiologist in Dallas, she told me that while the suburbs are great to live in, it is not the right place to go for life or death situations. She suggested a very famous doctor who is director of transplant of organs in Chicago. After I met him and took more tests, he agreed that I had cholangiocarcinoma. But because he has only seen a few cases, he suggested that I go to Mayo Clinic in Minnesota for further evaluation.
After getting approved with Mayo, I took more tests and met with an oncologist who said that I do not have cancer but suggested I take more tests. So after 2 more weeks of tests, met with more doctors and said that I do have bile duct cancer and probably colon cancer also. So back again for more tests and I seriously dont think that an abdominal test was missed. lol …. So 2 weeks ago, I meet with 3 doctors, one being the surgeon. He said that Mayo doctors do not have any clue what I have but they do know that the tumor in my bile duct does not belong there and it must come out. They said that after it is removed, they will figure out what it is. Surgery was the next morning and lasted 6 hours.
It took less than 24 hours for them to figure out that I had Mirizzi Syndrome, Type 2. Again, a very rare case. They said that I was a very very lucky lady and Mirizzi mirror images Cholangiocarcinoma and this is why everyone was so confused.
I am writing this to tell you how important it is get a 3rd & 4th opinion. It is also important to go where your doctor has treated cases of this nature before. So please, read this site, although heartbreaking, it is very important that you are your own health advocate.
How am I doing? While I was at Mayo (they removed the gallbladder and common bile duct & replaced it with my small intestant), I got an infection and am at a friends with a large open wound. I have someone come in and change the bandages 2x a day, probably for another 4 weeks. But other than that I am great and I thank God everyday that I am alive. So while I am still weak, please let me know what I can do to help with this outstanding organization or if I can help any patient or help this site. I was brought here for a reason, so let me help.
Again, my message to every bile duct cancer patient or caregiver… PLEASE GET A 2nd, 3rd & even a 4th OPINION!!! Miracles do happen and never ever give up. God Bless everyone on this site and prayers go out to everyone one of you.
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