Possible misdiagnosis?
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Georgie is bringing up something interesting re: the possiility of PSC. Four years ago this is exactly what had happened when someone had been diagnosed with CC when in fact, it turned out to be PSC. Tumors less than 1cm in size will not show up on a scan therefore, the true diagnoses or extension of disease only can be confirmed during surgery.
All my best wishes,
MarionHi
And hopefully its not cc, Is there a chance for either patient thst PSC can be the culprit? It does require stenting and does cause infections. Actually some on this board started out w/ PSC. Just a thought. I would have thought that
the tumor or tumors could be seen on the scans but I guess not??Please let us know how it goes.
best intentions,
georgie430
Hi Minnie…it’s been awhile so I familiarized myself with your past posts before I answered you. I know he doesn’t want to go through anymore testing but I know I would have gotten a second opinion. It if looks like a duck and quacks like a duck it is usually a duck. I would definitley want to know WHAT my husband has. I would collect all if his Medical history and send it to a major Cancer Hospital like John Hopkins/etc. IF he doesn’t have CC why all the stent placements? Are these doctors real experienced with CC? I truly believe another opinion is in order.
Hi Barbara, I think we might have had a misdiagnosis too. My husband was diagnosed May 2010 with CC. he had two stents put in to relive the jaundice and the whole next year was a nightmare. I won’t go into the details but he almost died several times with infections. and has had two different sets of opinions. Now he had a metal stent put in over 3 months ago and seems to be getting better every day. In fact his tests are all perfectly normal and he has gained back all the lost weight and he acts and lives perfectly normal like nothing every happened. He doesn’t want to go through any more testing so here we are. It is sure messing with my mind I’ll tell you. Our doctors just scratch their head and say he sure doesn’t follow any test book, so leave him alone. I hope you get some answers. If it’s not CC then what else could it be? Thant’s what I want to know!!
Barbara….Hello and welcome to our site. I don’t have much to offer than what has already been mentioned by the others. Please, gather all medical records and search for another medical opinion.
All my best wishes,
MarionHi Barbara,
Welcome to the site. Sorry that you had to find us all and I am sorry to hear about your dad. He and your family have been through so much and I can totally understand your dads frustration here, no wonder you are all so upset with this. I completely agree with what Lainy and Percy have said to you about getting your dad seen immediately by doctors in another hospital and they have both given you excellent suggestions as to where he could be seen.
Please could you let us know how you get on with this and I wish you every success with getting your dad seen elsewhere.
My best wishes to you and your dad,
Gavin
Hi,
The best way to find out is to make an appointment with John Hopkins,indicated that you need a ” REVIEW and 2nd opinion on current treatment plan provided by the other hospital and oncologist.”
John Hopkins is ranked the #1 hospital OVERALL for the past 15-20 years.So they should be able to provide you the overall review and opinion for your dad’s CC by medical oncologist and radiologist there.Bring all the CTscan (not only the reports but the copied disc) and your current oncology treatment protocol to John Hopkins.If you are not sure what to bring,ask JH on the phone when making the appointment.Do it ASAP if you can.
God bless.
God bless.Dear Barbara, welcome to our wonderful famiy but sorry you had to join us. Your father has been through the mill and back. My suggestion is, RUN don’t walk with all of his records to either: Mayo Clinic in Rochester MN or John Hopkins which would be closer to you. Gather all his records and send them to either Hospital for another opinion. When a doctor admits he does not know what is wrong, it is time to get into action. I know some of our exceptional members will also suggest hospitals in your area. Best of luck.
Hi, I’m hoping someone can help me. My dad was diagnosed with CC in late June of 2010. His was admitted after jaundice and weight loss. He was diagnosed the first day he was in the hospital with elevated bilirubin levels. He spent about 10 days in UMMC before being released. He then went to Dana Farber in Boston where he was admitted immediately since his kidneys were failing and he was near death. He spent about another 5 weeks in the hospital. Over the the course of the past year he has had about 40+ surgical procedures. He’s had stents, internal drains, external drains, constant leaky drains. In addition he’s done several rounds of chemotheraphy, radiation. He’s had numerous transfusions, fluid replacement, magnesium etc. Also, his had his stomach drained too many times for me to count.
To make a long story a little short on Friday when he went to have his chemo done, his dr. said they would no longer be doing chemo since they are not sure what good it is doing him his catscan looked good and his pathology never showed that he had cancer. The dr admitted that he his frustrated because he is not sure what is wrong with my dad. My dad is upset and frustrated as well. There is obviously something seriously wrong with him but we are not sure what. He’s been through so much as well as my family dealing with his illness but I’m not sure how he can be helped.
Has anyone on this board experienced anything like this? Any insight you could provided would be greatly appreciated.
Thank you,
Barbara
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