Discussions By Condition: Medical Errors

Terminal Cancer Misdiagnosis

Posted In: Medical Errors 22 Replies
  • Posted By: MichelleK
  • November 14, 2007
  • 00:06 AM

Long Story. After going through some tragic events in my life, in February of 2006 - I finally felt as though I had come through on top. I was ready to start over and my life took on a new meaning. I went to my doctor for trouble I had with my colon since having a hystorectomy in 2005. During a test, they noticed that I had an enlarged spleen. I was sent to an oncologist and she promtly sent me in for a CT Scan with IV contrast. Within minutes, I became extremely ill. Within an hour, I was in the ER with what was later diagnosed as "the flu". I returned to the ER for 4 days - being sent home everytime as if I were lying. My UA's looked red - strange for having no uterus! Finally, on the fourth day they finally noticed that I had gone into complete renal failure. By now the doctors were telling my husband that they would do what they could, but it may not be enough. I spent weeks having complete plasma exchanges every other day and kidney dialysis. Against all odds, I made it (obviously)! I have never been happier to be alive! Life was beautiful! Oh - and the spleen - I was told in the hospital that I was cancer free!
May 10, 2006 - A few weeks after I left the hospital, I returned to the oncologist for my "release". She asked why I came alone. Why wouldn't I? Still feeling on top of the world! She asked that I get my husband on the phone. I didn't hear a word she said as if I were not in my body when she told me that I had cancer. I had Chronic Lymphocitic Lukemia, Stage II. WHAT THE ***l IS CLL? The problem is - I was the "youngest patient ever" - 31 years old. There is no cure or treatment for CLL. I would live "as long as" 10 years. "Go home and forget you have it". Only chronically ill patients would have a reaction to IV Contrast. End of story. I lost my entire life in 10 seconds! Most of my "friends" said that it was "too hard" to go through with me.(I already know..Friends?) I went to counseling. I acted and felt as if I were already dead. A year later, I went to MD Anderson ready to fight! THERE WAS NO CANCER! I have an extremely rare immune disease that will not kill me. No CT scans obviously! or shots, injections, etc. There are a million reasons for me to feel more alive than anyone on this planet but I am having a hard time. that I just want my life back. How does something like this happen to anyone?
-Michelle, 33 years old

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  • Long Story. After going through some tragic events in my life, in February of 2006 - I finally felt as though I had come through on top. I was ready to start over and my life took on a new meaning. I went to my doctor for trouble I had with my colon since having a hystorectomy in 2005. During a test, they noticed that I had an enlarged spleen. I was sent to an oncologist and she promtly sent me in for a CT Scan with IV contrast. Within minutes, I became extremely ill. Within an hour, I was in the ER with what was later diagnosed as "the flu". I returned to the ER for 4 days - being sent home everytime as if I were lying. My UA's looked red - strange for having no uterus! Finally, on the fourth day they finally noticed that I had gone into complete renal failure. By now the doctors were telling my husband that they would do what they could, but it may not be enough. I spent weeks having complete plasma exchanges every other day and kidney dialysis. Against all odds, I made it (obviously)! I have never been happier to be alive! Life was beautiful! Oh - and the spleen - I was told in the hospital that I was cancer free! May 10, 2006 - A few weeks after I left the hospital, I returned to the oncologist for my "release". She asked why I came alone. Why wouldn't I? Still feeling on top of the world! She asked that I get my husband on the phone. I didn't hear a word she said as if I were not in my body when she told me that I had cancer. I had Chronic Lymphocitic Lukemia, Stage II. WHAT THE ***l IS CLL? The problem is - I was the "youngest patient ever" - 31 years old. There is no cure or treatment for CLL. I would live "as long as" 10 years. "Go home and forget you have it". Only chronically ill patients would have a reaction to IV Contrast. End of story. I lost my entire life in 10 seconds! Most of my "friends" said that it was "too hard" to go through with me.(I already know..Friends?) I went to counseling. I acted and felt as if I were already dead. A year later, I went to MD Anderson ready to fight! THERE WAS NO CANCER! I have an extremely rare immune disease that will not kill me. No CT scans obviously! or shots, injections, etc. There are a million reasons for me to feel more alive than anyone on this planet but I am having a hard time. that I just want my life back. How does something like this happen to anyone?-Michelle, 33 years old How did they make the diagnosis of CLL, especially on someone as young as you? They totally blew it. You probably had a high lymphocyte count, and some smudge cells and someone thought CLL. You would need some sort of immunophenotyping back up to establish it as CLL, such as CD5/19 coexpression, evidence of clonality etc. More than likely, a peripheral smear was read as absolute lymphocytosis, rule out CLL, and a doctor jumped on it as CLL.
    A pathologist 12 Replies
    • November 21, 2007
    • 08:11 PM
    • 0
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  • Can you see a lawyer...also..sounds like you had a reaction to the dye they injected...that dye can have horrible affects on some people..that's why they make you sign a wavier.
    Monsterlove 2921 Replies
    • November 22, 2007
    • 07:46 AM
    • 0
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  • Hang in there, Michelle!You surely have been through a lot, but why? The answer is called "humility", and the good Lord permits this to happen for probably dozens of reasons. It will make the doctors, nursing and other staff in those departments a bit (a lot) wiser. It showed you that friends are, well, pretty rare. It really HAS made you stronger and wiser. But remember, stay cheerful -- YOU ARE ALIVE, and many, many times life has been much extended simply because "sick" people truly enjoyed life, and the world God has put us into for a while. Am praying for you, and for so many who go through the roller-coaster of "health care" in this world.
    angie5 2 Replies
    • November 22, 2007
    • 11:45 AM
    • 0
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  • Can you see a lawyer...also..sounds like you had a reaction to the dye they injected...that dye can have horrible affects on some people..that's why they make you sign a wavier. No. You are wrong. She probably had a condition called TTP-HUS. Look it up. It occurs in young people her age, and it is immunologic. It would explain her enlarged spleen, the renal failure, and the blood changes. It often follows a flu-like condition. The doctors actually did an excellent job of keeping her alive. Lawyers would do her no good. She should feel very happy to be alive.
    A pathologist 12 Replies
    • November 23, 2007
    • 07:31 PM
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  • Oh come on, she had a horrible reaction to the dye. The diagnosis came much later after the hospitalization. She needs to consult with an attorney and run it by him. She better never have a contrast dye again. http://en.wikipedia.org/wiki/Radiocontrast Contrast-induced nephropathyContrast-induced nephropathy is defined as either a greater than 25% increase of serum creatinine or an absolute increase in serum creatinine of 0.5 mg/dL.To minimize the risk for contrast-induced nephropathy, various actions can be taken if the patient has predisposing conditions. These have been reviewed in a meta-analysis. A separate meta-analysis addresses interventions in for emergent patients with baseline renal insufficiency.Three factors have been associated with an increased risk of contrast-induced nephropathy: preexisting renal insufficiency (such as Creatinine clearance A clinical prediction rule is available to estimate probability of nephropathy (increase ≥25% and/or ≥0.5 mg/dl in serum creatinine at 48 h):
    Monsterlove 2921 Replies
    • November 24, 2007
    • 08:46 AM
    • 0
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  • Oh come on, she had a horrible reaction to the dye. The diagnosis came much later after the hospitalization. She needs to consult with an attorney and run it by him. She better never have a contrast dye again. http://en.wikipedia.org/wiki/Radiocontrast Contrast-induced nephropathyContrast-induced nephropathy is defined as either a greater than 25% increase of serum creatinine or an absolute increase in serum creatinine of 0.5 mg/dL.To minimize the risk for contrast-induced nephropathy, various actions can be taken if the patient has predisposing conditions. These have been reviewed in a meta-analysis. A separate meta-analysis addresses interventions in for emergent patients with baseline renal insufficiency.Three factors have been associated with an increased risk of contrast-induced nephropathy: preexisting renal insufficiency (such as Creatinine clearance A clinical prediction rule is available to estimate probability of nephropathy (increase ≥25% and/or ≥0.5 mg/dl in serum creatinine at 48 h): I'm just telling you what is more likely based on the scenario the patient listed. 1. She is very young. 2. There was evidence of hemolysis (red-brown urine). 3. Her spleen was enlarged by an immunologic process 4. She was treated at one point with Plasmapheresis. Of course I would need to know platelet counts etc at this point.In investigation of deaths, I've seen many times when a "reaction" to something was just coincidental in the timing. She may have just happened to have felt more feverish and ill during the procedure, but it did not necessarily cause the problem. Most of the dye reactions that occur immediately, as she described, are anaphylactic, and don't usually result in the kidney damage described. Most of the cases of Contrast induced nephropathy occur in older patients with already poor kidney fuction. In a young patient, you would usually just see a change in Cr clearance indicating some renal insufficiency, and not outright failure. I'm not completely ruling out some reaction to the dye, but my hunch is TTP-HUS. http://www.med.unc.edu/medicine/web/ttp.pdf I've seen this several times in women her age, and I have yet to see significant renal failure in a young person from dye in 20 years practice.
    A pathologist 12 Replies
    • November 26, 2007
    • 02:54 PM
    • 0
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  • Oh come on, she had a horrible reaction to the dye. The diagnosis came much later after the hospitalization. She needs to consult with an attorney and run it by him. She better never have a contrast dye again. http://en.wikipedia.org/wiki/Radiocontrast Contrast-induced nephropathyContrast-induced nephropathy is defined as either a greater than 25% increase of serum creatinine or an absolute increase in serum creatinine of 0.5 mg/dL.To minimize the risk for contrast-induced nephropathy, various actions can be taken if the patient has predisposing conditions. These have been reviewed in a meta-analysis. A separate meta-analysis addresses interventions in for emergent patients with baseline renal insufficiency.Three factors have been associated with an increased risk of contrast-induced nephropathy: preexisting renal insufficiency (such as Creatinine clearance A clinical prediction rule is available to estimate probability of nephropathy (increase ≥25% and/or ≥0.5 mg/dl in serum creatinine at 48 h): I'm just telling you what is more likely based on the scenario the patient listed. 1. She is very young. 2. There was evidence of hemolysis (red-brown urine). 3. Her spleen was enlarged by an immunologic process 4. She was treated at one point with Plasmapheresis. Of course I would need to know platelet counts etc at this point.In investigation of deaths, I've seen many times when a "reaction" to something was just coincidental in the timing. She may have just happened to have felt more feverish and ill during the procedure, but it did not necessarily cause the problem. Most of the dye reactions that occur immediately, as she described, are anaphylactic, and don't usually result in the kidney damage described. Most of the cases of Contrast induced nephropathy occur in older patients with already poor kidney fuction. In a young patient, you would usually just see a change in Cr clearance indicating some renal insufficiency, and not outright failure. I'm not completely ruling out some reaction to the dye, but my hunch is TTP-HUS. http://www.med.unc.edu/medicine/web/ttp.pdf I've seen this several times in women her age, and I have yet to see significant renal failure in a young person from dye in 20 years practice. Hey, but I don't claim to know or have seen everything...
    A pathologist 12 Replies
    • November 26, 2007
    • 02:54 PM
    • 0
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  • Thank you for all responses. Pathologist - I have never heard of what you are talking about. Some of what I read made sense - otherwise hard to understand! Does it matter that I had pre-eclampsia very severe to cause birth at 32 weeks in 2003. I have suffered with HBP since. MD Anderson says it is a immune disorder in which my cells do not have the ability to "class switch". It is my WBC that is extremely high and the B cells which look like Lukemia cells - hence the diagnosis - but they are benign. Genoptix Lab made the diagnosis of CLL. There are no doctors - both Colorado and Texas - who do not believe the IV Contrast caused the renal failure. My life since 1995 has been a medical mystery!
    MichelleK 3 Replies
    • December 31, 2007
    • 06:31 AM
    • 0
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  • Thank you for all responses. Pathologist - I have never heard of what you are talking about. Some of what I read made sense - otherwise hard to understand! Does it matter that I had pre-eclampsia very severe to cause birth at 32 weeks in 2003. I have suffered with HBP since. MD Anderson says it is a immune disorder in which my cells do not have the ability to "class switch". It is my WBC that is extremely high and the B cells which look like Lukemia cells - hence the diagnosis - but they are benign. Genoptix Lab made the diagnosis of CLL. There are no doctors - both Colorado and Texas - who do not believe the IV Contrast caused the renal failure. My life since 1995 has been a medical mystery! With that additional information. Yes it does make sense. Genoptix may have made a mistake in overintertrpting clonality. Yes, dye reaction does make sense in this setting.
    A pathologist 12 Replies
    • December 31, 2007
    • 07:38 PM
    • 0
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  • well then, I concur with the pathologist...
    Monsterlove 2921 Replies
    • December 31, 2007
    • 10:05 PM
    • 0
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  • Do you actually concur Monsterlove- or do you just not know what the pathologist is talking about?
    fewd4thought 126 Replies
    • January 8, 2008
    • 06:08 AM
    • 0
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  • Thanks Michelle for sharing your story. Coincidentally, I work on a Discovery Health Channel show that deals with medical mysteries. Would you consider chatting with me about what happened to you? When it comes to rare illnesses, this show is a good vehicle to promote awareness. If you're interested, you can email me at barbette@mikemathisprods.comThanks for your attention!barbette
    mysterybette 9 Replies
    • January 21, 2008
    • 10:18 PM
    • 0
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  • To pathologist: I wondered what the TTP stood for. I knew HUS was as my daughter had it and her kidneys failed and had to have dialysis. My mind instantly went to HUS but didn't know the rest, and I agree with the being allergic to the dye. I am that. But anyway to MichelleK I do sympathize with you as I have chronic kidney failure stage III. I hope I never get to stage V, but at this time I have to carry a little yellow card to show my drs. and anyone who withdraws any blood from me that they have to use my hand veins as I will need my viens later in life, (nice):eek:
    klschup 42 Replies
    • January 30, 2008
    • 11:04 PM
    • 0
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  • I am sorry for what you are going through! I wish that on no one. What is HUS and how/ why are you allergic to the dye?
    MichelleK 3 Replies
    • January 31, 2008
    • 00:28 AM
    • 0
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  • To MichelleK: HUS is hemolytic uremic syndrome. Your answer to the dye is that I break out in hives. So if they absolutely have to give me dye, they give me a good dose of prednisone and maybe an antihistimine. But running late. So I have to go. If you have anymore ?'s just post or I can give you my email.-----------klschup;)
    klschup 42 Replies
    • January 31, 2008
    • 01:12 AM
    • 0
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  • Hi MichelleK,I am so sorry for what you had to go through. It must have been such a difficult year for you and your family. I feel your story is extremely interesting and should be brought to the attention of the public! Misdiagnoses happen all too often!I am the Casting Producer for Mystery Diagnosis on Discovery Health. MD is currently in its 6th season and presents the stories of medical mysteries. They are told through intimate interviews with the patients themselves, their families, friends, and doctors. These interviews, in combination with photos, home movies, and highly stylized recreations, take the viewer step-by-step through a patient’s medical odyssey. If you would be interested in possibly sharing your story on television please contact me at eanniello@trueentertainment.net I think this story is so important and needs to be told!Thank you for your time,Joanna
    Joanna213 1 Replies Flag this Response
  • I just read about your misdiagnosis and found this link: http://xnet.kp.org/permanentejournal/sum05/renal.html Maybe it will help someCallie
    memaw5 1 Replies Flag this Response
  • Hang in there, Michelle!You surely have been through a lot, but why? The answer is called "humility", and the good Lord permits this to happen for probably dozens of reasons. It will make the doctors, nursing and other staff in those departments a bit (a lot) wiser. It showed you that friends are, well, pretty rare. It really HAS made you stronger and wiser. But remember, stay cheerful -- YOU ARE ALIVE, and many, many times life has been much extended simply because "sick" people truly enjoyed life, and the world God has put us into for a while. Am praying for you, and for so many who go through the roller-coaster of "health care" in this world.^Oh, what the crap...Anyway, misdiagnosis can be tough. We need better mechanisms that allow doctors to diagnose without giving death sentences.
    npcomplete 20 Replies Flag this Response
  • Long Story. After going through some tragic events in my life, in February of 2006 - I finally felt as though I had come through on top. I was ready to start over and my life took on a new meaning. I went to my doctor for trouble I had with my colon since having a hystorectomy in 2005. During a test, they noticed that I had an enlarged spleen. I was sent to an oncologist and she promtly sent me in for a CT Scan with IV contrast. Within minutes, I became extremely ill. Within an hour, I was in the ER with what was later diagnosed as "the flu". I returned to the ER for 4 days - being sent home everytime as if I were lying. My UA's looked red - strange for having no uterus! Finally, on the fourth day they finally noticed that I had gone into complete renal failure. By now the doctors were telling my husband that they would do what they could, but it may not be enough. I spent weeks having complete plasma exchanges every other day and kidney dialysis. Against all odds, I made it (obviously)! I have never been happier to be alive! Life was beautiful! Oh - and the spleen - I was told in the hospital that I was cancer free! May 10, 2006 - A few weeks after I left the hospital, I returned to the oncologist for my "release". She asked why I came alone. Why wouldn't I? Still feeling on top of the world! She asked that I get my husband on the phone. I didn't hear a word she said as if I were not in my body when she told me that I had cancer. I had Chronic Lymphocitic Lukemia, Stage II. WHAT THE ***l IS CLL? The problem is - I was the "youngest patient ever" - 31 years old. There is no cure or treatment for CLL. I would live "as long as" 10 years. "Go home and forget you have it". Only chronically ill patients would have a reaction to IV Contrast. End of story. I lost my entire life in 10 seconds! Most of my "friends" said that it was "too hard" to go through with me.(I already know..Friends?) I went to counseling. I acted and felt as if I were already dead. A year later, I went to MD Anderson ready to fight! THERE WAS NO CANCER! I have an extremely rare immune disease that will not kill me. No CT scans obviously! or shots, injections, etc. There are a million reasons for me to feel more alive than anyone on this planet but I am having a hard time. that I just want my life back. How does something like this happen to anyone?-Michelle, 33 years oldI under stand what you went through have my health issues I also know friends run friends? I understand that my own family ran for a bit well if you need a friend I am here god bless
    Anonymous 42789 Replies Flag this Response
  • Michelle, that sounds like a terrible misdiagnosis and a lot of stress. There are still some proactive things you can do to improve your health, improve your immune disease, and feel better about the whole situation.I've written more extensively about autoimmune disorders at http://healthandwellnessnewsnow.blogspot.com/2009/12/natural-eczema-treatments.htmlI hope this info is helpful! God bless.
    Anonymous 42789 Replies
    • December 30, 2009
    • 09:43 PM
    • 0
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