Abstract
Summary: This is my story of the extreme pain and fatigue I experienced from cancer that went misdiagnosed for nearly 3 years. I also tell the story of the heartbreak I felt when I was told my misdiagnosis was a “series of unfortunate events.” I understand that doctors often have an impossible job and are fallible. I question how well health care system leadership works to help doctors and patients by acknowledging and proactively working to prevent the same mistakes. I understand that this issue is pervasive in many health systems. Errors can only be prevented by understanding the root causes and correcting the underlying problems. I have also learned of the patient safety movement and learned that patients have the opportunity to meet with their health care providers to discuss problems in the system. Perhaps some good can come of my experience.
Keywords: Misdiagnosis, missed diagnosis, metastatic breast cancer, metastatic cancer, EHR, transparency, patient safety.
Citation: Holliman K. Metastatic breast cancer: lessons learned from my missed diagnosis. J Participat Med. 2013 Apr 10; 5:e15.
Published: April 10, 2013.
Competing Interests: The author has declared that no competing interests exist.
My Story
I have terminal metastatic breast cancer. It could have been diagnosed in February 2008 (vs December 2010) when my battle would have been more worthwhile. That would have alleviated almost three years of suffering, but that is not why I need to share my story.
My story is a cautionary tale about medical mistakes, basic communication failures between busy but fallible doctors, and my naive faith in a “world class academic health system.” It is also a story of many lessons I have learned as a misdiagnosed patient. Had I known these beforehand and realized the prevalence of medical mistakes in the US, I unquestionably would have participated more in my own care and may have been diagnosed much earlier. I have learned that medical mistakes are the third leading cause of death in the US after heart disease and cancer.[1]
My hope in sharing my story is that patients adopt a different attitude about managing their own health care.
Since 2008, I have spent years and gone to over 50 doctor appointments with my primary care provider (PCP) and specialists. I was trying to understand the reasons for my back pain, which began in 2007, and my extreme fatigue, which began in 2005.
I had an MRI in February 2008 that showed concerns for metastatic disease in multiple vertebrae. A bone scan was ordered that did not correspond to the MRI results. My PCP told me I did not have cancer and I believed him.
I went to many other doctors who also missed the diagnosis until the cancer was found in December 2010. I pored through my medical records and realized all of the evidence needed to diagnose my cancer was available as early as that first MRI in February 2008.
A Series of Mistakes
I hired a professional patient advocate to help me review my health records and an MRI radiologist to review my MRI images. The MRI radiologist said that MRIs are one of the best imaging tests to detect metastatic cancer in the early stages. A bone scan can provide complementary information but does not rule out MRI findings. He said the MRI shows I likely had cancer and confirmed that I should have had a biopsy immediately.
We all know the importance of early detection and treatment of cancer. I was dismayed about my missed diagnosis and the impact the cancer had on my body. A colleague recommended that I talk with my care providers. I requested meetings through the health system’s legal representative to understand the reasons for my missed diagnosis and the decisions made in my case. I wanted to discuss how we could improve the system to ensure this doesn’t happen to other patients. Details as well as opportunities for improvement emerged from the individual meetings with my key care providers. My family members attended and I also invited a note taker. The health system’s legal representatives also attended. Meetings were held around January 2012.
During my post-diagnosis PCP meeting I found that he made tragic assumptions. My PCP stated he didn’t know which radiology test was better and thought the bone scan ruled out the MRI results. Also, after my bone scan there was no two-way communication between the radiologists or between radiology and my PCP. Radiology made no further recommendations for a definitive diagnosis or followup. My PCP made no attempt to contact either radiologist for further information. My family and I feel this is a serious flaw in the system. I asked my PCP if he ever went back to review my records, especially considering that I was getting worse and considering the sheer number of referrals. He said he did not but will learn from this.
My back pain became much worse in early 2009. I saw my PCP in February and March 2009. In March he referred me for an orthopedic appointment. The orthopedist could have detected my PCP’s decision errors from 2008. I felt this doctor was rushed and insensitive. My pain level wasn’t assessed. I called a patient advocate but asked her to hold and not distribute the report until I read the doctor’s notes. I made a mistake in not filing the report immediately. I filed the report only after my diagnosis. I did not go back to another orthopedist, which was an enormous mistake. If I had, I feel confident I would have been diagnosed in 2009.
In the post-diagnosis meeting with the orthopedist, she acknowledged she didn’t take a fresh look at my medical reports and scans. Instead she relied on what prior doctors did and assumed they were correct. She said, “I thought if something was wrong, your PCP surely would have caught it.” She deeply regretted this mistake. She outlined the systemic errors made by saying, “I relied on other people prior to me who had made mistakes. I made the same mistakes; what you needed was a biopsy; and there was a collusion of people saying, no, this is not cancer. I need to learn everything I can from this.”
Later in 2009, my PCP diagnosed me with fibromyalgia and chronic fatigue. I felt that was a misdiagnosis because my pain didn’t correlate with information I read about the disease. Looking back, I don’t know why I kept seeing this PCP because I knew he was not working towards an accurate diagnosis. I should have changed my PCP. I also should have sought a second opinion.
In late 2009, I began short-term disability, then went on to long-term disability due to severe depression.
By 2010, I was in significantly more pain. I was often unable to walk without assistance or rest due to pain from agonizing, unrelenting muscle spasms. I used a chair to get around my home. I was truly in despair and exhausted and had become increasingly passive and isolated. My sister had been helping me and became my official advocate in mid-2010.
In 2010 I sought the help of a pain doctor. The pain doctor tried several pain-relieving treatments and sent me to the Emergency Department (ED) twice in October 2010 for level 10 pain. I was sent home each time. The first ED doctor didn’t examine my back or listen to me. She didn’t update my electronic health record (EHR). My EHR was almost a complete fabrication because she didn’t change default data. It read; “Pain Level 1”, “No back tenderness.” “No acute distress.” This expensive visit was initially denied by insurance because of my EHR.
My pain doctor called the ED before my second visit about a week later and requested an emergency MRI. The MRI was denied but scheduled days later.
On November 3, 2010, I finally had an MRI. My pain doctor called that evening saying my MRI revealed widespread cancer. Specifically, cancer was seen throughout my entire spine, sacrum and pelvis, and I had loss of height and a compression fracture (break). My pain and fatigue was finally given a name: Stage IV Metastatic Cancer. After a bone marrow, lymph node and bone biopsy, it was confirmed in December 2010 that I had metastatic breast cancer. After a breast biopsy, I found my breast cancer was estrogen positive (ER+) and progesterone positive (PR+).
My family and I were disappointed in my post-diagnosis meeting with the two radiologists. The MRI radiologist evaded questions and often giggled during the meeting. The bone scan radiologist was helpful, saying the bone scan is an imperfect test and sometimes has a false distribution. He said he doesn’t see two such differing reports often: “in review, something else should have been done. If the MRI radiologist and I had talked, had put the puzzle together… It’s something we should have done. We have to fix this problem… A lot goes down to communication. This is a time when we have some flexibility in initiating some reporting changes.”
Because of the lack of information from the MRI radiologist, I requested a meeting with the radiology department chair. The chair promised to arrange a meeting with radiologists and PCPs to develop collective wisdom on handling scans with divergent results and how to adjudicate them and help guide PCPs. The chair said he would query the database system they had in place to see how often this kind of scenario happens and take necessary steps. He said he would keep me informed but I do not know if these tasks were accomplished.
In December 2010 I saw an oncologist. My prognosis was estimated at 3 years, depending on my response to treatment.
Later in December I had an outpatient procedure called kyphoplasty to relieve the pain caused by my fracture. This doctor found two spinal fractures. Since this procedure and radiation, I am never pain free, but I feel better than I have in many years though I’m still very tired.
Trying to Make Sense of It
I’d had annual mammograms. All were negative but noted extremely dense breast tissue. I now understand that dense breasts have a higher proportion of connective tissue rather than fatty tissue, making it more difficult for mammograms to see tumors. I recently learned that breast density is also a significant risk factor for breast cancer.[2] I don’t have a family history of breast cancer.
I struggle to understand how my diagnosis was missed for so long. I suffer with the knowledge that the delay in diagnosis meant a delay in pain relieving and life extending treatments, including stopping the hormone replacement therapy (HRT) prescribed by my PCP, which fed my cancer the hormones it needed to thrive for years.
I yearn to go back to March 2008 and question my PCP effectively. I have learned there are critical questions you need to ask your doctor and that you can verify the information. I believe had I asked these critical questions I might have been diagnosed with cancer in early 2008. I could have asked him what the radiologists concluded, especially considering the alarming notes in the MRI report. I would have found out that my PCP had not communicated with the radiologists, and I would then have asked him to please get the specialist’s opinions. I could have asked him to help me understand the basis for his confidence in his decision. I could have done some research on radiology imaging and learned that my MRI should not have been ruled out.
I yearn to go back to early 2009 and see another orthopedist.
I yearn to go back to the ED in late 2010 and request another doctor and imaging test.
The Health System’s Response
I understand that doctors often have an impossible job and are imperfect. My concern is how well the health systems work to help its doctors, nurses, staff, and patients by acknowledging and proactively working to prevent the same mistakes in the future. Errors can only be prevented by understanding the root causes and correcting the underlying problems. The errors made in my case were all easily preventable.
After learning about my diagnosis in December 2010 and before I realized I could meet with my doctors, I sent a note to a legal representative explaining the gravity of my situation. I expected accountability, an apology, compensation for the missed diagnosis and years of unnecessary suffering and loss of income. I also expected to understand what happened and hoped the problems would be fixed.
After 4 months, the legal representative contacted me and said my case was deemed “a series of unfortunate events” by the system’s Joint Liability Steering Committee.
The system absolved itself of all responsibility. I feel this is a far greater mistake than my misdiagnosis because I know this can happen again to other patients. I have grieved that Committee’s decision. I am troubled at the system’s failure to act to get to the root cause and ensure this doesn’t happen to others. Owning up to mistakes, telling patients what happened and taking accountability is vital for patients to move forward.
However, in these post-diagnosis meetings with my care providers, especially hearing the PCP, orthopedist and bone scan radiologist acknowledge the mistakes and knowing that they will learn from this, I found healing. After these meetings I spent weeks preparing a document for the health system. I submitted the document in February 2012 in which I a) outlined my experience, b) included notes from meetings with my care providers and c) identified many opportunities for changes that could improve the quality of care and patient outcomes. Recommendations for change were offered in a spirit of compassion and concern for other patients.
I received a note from a legal representative saying thank you. Upon inquiry, I found the document was distributed but nothing was being done to reverse the Joint Liability Steering Committee’s initial decision. I did not receive any commitment that they would implement changes at the many opportunities identified.
Moving Forward
Lessons Learned Checklist:
- Expect mistakes from your health provider;
- Ask critical questions at every visit. Take a written list of questions in order of priority. If you get home and realize something is not clear, contact your doctor again;
- Get a friend or family member to serve as your advocate;
- Communication between doctors is absolutely critical. If a Radiology report indicates possible metastatic disease or something equally alarming make sure you get a definitive diagnosis. Rule out the worst-case scenarios. Make sure the doctors involved have talked;
- If you aren’t confident about the doctor’s diagnosis, ask your doctor to review your records with colleagues to see what might have been missed;
- Get a second opinion;
- Choose doctors who take time and listen. Ask for a copy of the doctor’s notes to ensure your issues are documented properly. This also ensures the doctor heard what you said;
- Ask specialists to take a “fresh look” at your case;
- Make use of hospital patient advocate resources without delay.
Shortcomings are not unique to this health system. All systems make mistakes and many are unwilling to tell the truth for fear of litigation or public scrutiny. A wall of silence permeates most health systems and medical mistakes are covered up. After reading Top Screwups Doctors Make and How to Avoid Them by Joe Graedon, MS, and Teresa Graedon, PhD, I learned that a patient safety movement has developed momentum to improve this situation.[1] I’ve learned that some health systems are offering transparency programs which have resulted in lower liability costs. I am grateful for the people and health systems involved in this movement.
Perhaps some good can come from my experience. I hope people who read this story will adopt a different attitude about their own medical care and ask vital questions of your doctors. That possibility gives me hope.
References
- Graedon J, Graedon T. Top Screwups Doctors Make and How to Avoid Them. New York: Crown Publishing Group; 2011, page 5. ↩
- Sy S, Lemieux C. The cancer risk factor you’ve probably never heard of. ABC News. October 5, 2011. Available at: http://abcnews.go.com/Health/dense-breasts-breast-cancer-doctor-telling/story?id=14673580#.UWXXcsoWBTE. Accessed April 10, 2013. ↩
Copyright: © 2013 Karen Holliman. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the author, with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.
Thank you for telling your story. It will inspire others to learn from your situation. It is also too familiar to me, as my cousin died at the age of 46 from metastatic breast cancer that was initially diagnosed as back pain. I am amazed she did not receive better care since she worked for her state’s medical association as a secretary. She left behind two children who desperately needed their matriarch and three grandchildren who will have only vague memories of their “Mountain Mama.” Thank you for the strength you showed by completing the grievance process and allowing us all to learn from you.
Dear Connie.
Thank you for your comment from 2013. I have just become aware of responses on my article. I am so sorry to hear about the care your cousin “mountain momma” received. I hope the children are coping well.
People think we have such a great medical system when we now know medical mistakes are the 3rd leading cause of death in America.
I am doing ok. I walk every day and, because of the summer heat, just hired a young man in my neighborhood to walk my girl two days a week. I have traveled and spent so much time with family and friends. I have made so many new friends. I have seen my new great nephew and now a great niece. What a blessing to see my niece and witness what a great mother she is. Now I have a 2nd cousin who is pregnant and hope I can fly to see her and her baby in December.
I am on a new chemo called Ibrance which is quite toxic. It’s the worst treatment yet and I am not sure it’s working. I feel blessed to have had this time with other treatments that were not bad at all and worked a long time.
I am sorry this response is 2 years late.
I am sending love and peace to you and everyone who knew your lovely cousin. All my love to you.
Ive been experiencing breast pain for two years and I’ve had back and neck problems over ten years …two years ago they did mammogram said everything was normal in which I did not believe and I tried to tell them it’s too painful something is wrong but they just kept telling me everything is normal ..so first part of last year a year later went to Dr pain was worst in breasts they ordered mammogram 3d this time and they found a 6ml mass and sent me for biopsy ….had biopsy but they said everything is normal but didn’t give me a diagnosis of what the mass they found was and refused to call it a mass any longer but did say it could be an injury in which is not possible I would know …or necrosis ….do not believe this at all ..so didn’t know quite what to do ..and my PCP sent me to oncologist which order bone scans because I was aslo having severe bone pain especially in my lower legs. They said ihad to go back for a second xray because they found a spot on my leg …so I went back to have xray only to have them call me tell me my xray is normal but not telling me what the spot they found is …..I’m really confused and scared as now I’m having severe hypertension pain fatigue and just started having pain in back of head and nosebleed ….hoping they did not misdiagnose but I’m afraid they did and cannot tell you how upset because I told many drs something wrong they did not listen or take it seriously 😡
Dear Ms. Holliman,
First, let me congratulate you on your equanimity.
I am a professional patient advocate of over 20 yrs and a lay medical researcher for patients with diagnosed conditions for over 45 yrs. Your story is frighteningly common.
Your situation is both tragic and compelling. Your “series of unfortunate events” was nothing but systemic incompetence. The “CYA” attitude is shocking but should be expected. I fear what must happen when Obamacare kicks in. You are obviously educated and you were victimized, what will happen to those who actually see a doctor in the new scheme and are unable to do their “due diligence” to protect themselves?
I wish you peace in this terrible situation.
Lanie Longo
Dear Laney. I’m so sorry that I am just now responding to your kind message. I was unaware I was getting comments. Better late than never.
People think we have such a great medical system when we now know medical mistakes are the 3rd leading cause of death in America. I see my primary care physician around Duke and he cannot look me in the eye.
I am doing ok but my body is starting to get tired. I walk every day but have certainly slowed down with the summer heat. I feel like I have been so fortunate that therapy has worked so well for me. I have traveled and seen so many family and friends. I was here when my new great nephew and now a great niece were born and was able to meet them. What a blessing to see my niece show what a great mother she is. Now I have a 2nd cousin who is pregnant and hope I can fly to see her and her baby in December.
I am on a new chemo called Ibrance which is quite toxic. I am not sure it’s working but we will wait and see. It’s the first time my hair is thinning a great deal and first time i am having side effects.
I feel blessed to have had this time.
All my love. Karen
Thank you for your story. I am also having these problems. Yet, all tests are normal, THEY SAY, that is what is so scary! WHERE DID YOU RECEIVE TREATMENT? Local, cancer treatment centers??
My heart goes out to you. I have also gone through a medical nightmare related to breast cancer. I am alarmed and frightened at what appears to be arrogant medical apathy. The most frightening thing is that there is no transparency for doctors who “should have known better.” I had a very early Stage I cancer that turned into a Stage II(a) with lymph node involvement of two nodes. I lost my breast because my first surgeon left unclear margins after a lumpectomy. She told me she “was comfortable with it.” I now know you never leave margins that are not clear. She told me she couldn’t take any more because I am so small and she would have to cut into my breastbone.
My second surgeon who did the mastectomy told me that wasn’t true and was horrified at what had happened to me, telling me it NEVER should have happened! I told my oncologist and radiologist what the first surgeon had told me. I thought if it was a problem that they would voice a concern. Neither one of them did. I trusted them too and should not have! I had to go through many painful procedures and chemo, not to mention losing my breast, because of the first surgeon and non-responses.
With the exception of the second surgeon, they all let me down, but it was primarily the first surgeon’s fault. What scares me is that when I called a medical supply company and relayed what had happened to me without mentioning the first surgeon’s name, they knew who I was talking about. I was shocked and asked how they knew. They told me that I was not the only person who was talking about her, that other women were too. I filed a complaint against her with the medical board to no avail. Because of laws that protect doctors from transparency, I also feel like a victim of the law and the medical board. I wish you well.
Thank you Sandra. I am so sorry for the ordeal you experienced. Most doctors really do want to do a good job. There was one lady in the ER where I went. When I talked to any of my friends who are doctors there they would say “OH God – she is the worst”. I don’t know why hospitals don’t deal with doctors they know are sketchy.
Litigation makes it hard for doctors to say I’m sorry and i just read a great note from an ENT at Harvard B&Y who are/have implementing a program for healthcare providers to be able to apologize and talk to patients.
There is also a forum who just had their 8th annual conference (international) focusing on medical mistakes.
Mistakes are the 3rd leading cause of death. Unbelievable.
I really didn’t believe my primary care doctor at Duke cared. He doesn’t look me in the eye when I see him around Duke.
I received terrible care in the Duke ER and it’s known for it’s poor care. They are working on it. I should have refused to leave the ER the first time I went with such pain.
I am so sorry for what happened to you. It makes me tear up. Karen
Karen, thank you for sharing your story. I have always encouraged people in my family to take notes, to keep detailed files and to include other people when making complex decisions. And above all, to follow your intuition and share information if your condition is worsening and seek that second opinion. I can truly empathize with your story. Believe I can. And you were at a center of excellence. I wish you peace, comfort and healing. You’re a remarkable woman.
Thank you Sue.
I just found out I had comments to reply to.
Thank you for the kind words.
I believe medical mistakes are the 3rd leading cause of death. I am not surprised.
I have been doing very well. I’ve seen graduations and (I am an aunt) I have seen grant babies born and thriving. I have traveled and life has been good.
I just had to get over the anger.
Thank you again for the kind words. Karen
The most devastating part of this is Karen’s statement,”The system absolved itself of all responsibility. I feel this is a far greater mistake than my misdiagnosis because I know this can happen again to other patients.”
As horrifying as Karen’s own situation is, she and we would be comforted if this had become a lesson and correction for the parties involved. Karen’s suffering was discounted and diminished by the system again in the failure to use this for improving. Patients may not truly understand that the communication between providers is often non-existent or that certain tests have limitations, but those providers do!
A “series of unfortunate events” is a cynical way of saying, “We screwed up again, but we are used to it, and we accept it”. This is reprehensible and worse yet, correctable, given the desire to do so.
Hi Peggy. Thank you for the note and sorry it took so long for me to respond. I was unaware of comments and should have looked.
I participated in a (I think 5th annual) meeting regarding medical mistakes. There is a concerted effort by many in the US to reduce medical errors.
I believe it is now the 3rd leading cause of death.
I know of several organizations looking at how to decrease or learn from errors. There is an annual conference called Diagnostic Error in Medicine. They just had their 8th annual International Conference.
I am doing fairly well, I just moved into the more toxic chemo and hoping for the best. I have been living the best life I can. Thanks again for the note.
All my love. Karen
First, I would like to apologize to you. I was not involved in your care but I apologize for doctors because this happened and I am sorry. I have written on medical errors and remember that when I was a resident one of my mentors always said, “Trust no one, especially the attendings.” By that he meant keep looking for the mistakes others have made.
I am going to use your case (making sure your name is not used) to talk to our residents about how the errors could have been corrected more quickly, and how they need to keep reading and learning so that they will know when one test is better than another before making a judgement.
Hello Gloria. Thanks so much for the note and I apologize for the delay in responding.
Thank you for using my story. You are welcome to use my name.
I love the students, residents, intens and fellows, – they are the ones I trust the most. Many doctors are so lazy and stop looking. I went to the ER a year ago unable to walk because my body wasn’t moving the way I was asking it to move. I crawled to the bathroom and peed. I didn’t think I had a stroke because everything else was ok. My smile and arm movements, etc.
A resident came in and said I just have crystals in my ear and said I would have to do PT. I couldn’t have done that PT because of the cancer in my spine. The doctor came in with the same diagnosis. When they were leaving, the student said “We didn’t check her ears”. I am having balance issues and they didn’t check my ears. He found a great deal of fluid in one ear and I got some antibiotics. I could see the doctor’s eyes role when he had to turn back around. I told him what I thought. I COME TO THE ER AND YOU CAN’T EVEN DIAGNOSE AN EAR INFECTION. STOP BEING SO LAZY. THIS IS A BIG DEAL FOR PATIENTS
This makes me weep. I am so sorry you had to go through this. I am posting this blog in the hopes that it gives you some measure of optimism. I am the Director of the Center for Professionalism and Peer Support at Brigham and Women’s Hospital, a teaching hospital of Harvard Medical School. I am also a practicing surgeon (ENT). Through our Center, we have a Disclosure, Apology and Peer Support program that focuses on helping physicians have difficult discussions with patients and famililes after unanticipated outcomes, some of which are due to medical errors. Our experience has shown us that most clinicians feel a deep sense of sadness, guilt, shame and isolation after being involved in any care that harms a patient. In order for the clinician to be able to discuss such errors compassionately and transparently with the patients and families, we need to support the clinicians through such emotions so that they can be there for the patient and family. In addition, this helps the clinicians participate in patient safety processes designed to prevent such errors from happening again. We have work to do on this and we know it. Thank you for sharing your story as it is further motivation for our profession to continue this work. Again, I thank you for your courage.
Jo. So sorry it has taken this long to respond. I should have checked comments.
THANK YOU FOR WHAT YOU ARE DOING!
I participated in a (I think 5th annual) meeting regarding medical mistakes at Johns Hopkins. There is a concerted effort by many in the US to reduce medical errors.
I believe medical mistakes are now the 3rd leading cause of death.
I know of several organizations looking at how to decrease or learn from errors. I am sure you are aware there is an annual conference called Diagnostic Error in Medicine. They just had their 8th annual International Conference.
I am doing fairly well, I just moved into the more toxic chemo and hoping for the best. I have been living the best life I can. I have seen graduations and babies born. Fatigue is and always has been my biggest symptom. I wish so much that Duke and large healthcare institutions would enact the system you have put in place.
Thank you for your important work.
Karen
So sorry, Karin, about what happened to you and causing delay in appropriate diagnosis and treatment. I have dense breast tissue also and have had ultrasounds as back-up to my mammograms but usually only on the left breast due to a cyst that has been there for 20+ years. A year prior to my diagnosis of breast cancer in my right breast I had pleaded with the ultrasound tech to please do the ultrasound on my right breast also since I had felt a very small lump in it. She was argumentative but went ahead and did it. When she returned to the room after showing the radiologist the results of my ultrasound, she informed me that the right breast was ‘nothing to worry about’ per the radiologist. Well, ‘nothing to worry about’ developed into Stage II cancer after the lump had grown at an alarmingly rapid rate over a period of approximately 8 months. I did get the appropriate treatment: lumpectomy and radiation with follow-up Arimidex. The Arimidex worked for 14 months and I suddenly started getting back pain. I had attributed it to a 2-day car trip and went to see my chiropractor, which didn’t help and he told me to return again. I then went to my PCP and had an x-ray in his office which he said was negative for anything but he’d give me steroids to take and to return in a week if they didn’t help. I went back to the chiropractor and again had no relief. I had been out walking around a few days after I finished the steroids and during the car ride home developed severe back pain and told my husband to take me to the ER. Please note that I am an ER nurse and worked in this hospital for 6 years though at the time I worked in a different department. The ER physician who ‘examined’ me without laying a hand on me said I should have an MRI but they didn’t do MRIs in the evenings. He prescribed me a pain medication that I was allergic to – clearly written on my records – and I even had to argue with the ER nurse that it was the medicine I was allergic to but just a different name! I was sent on my way with a different pain prescription but upon presenting it to the Pharmacist found it was unsigned. I refused to drive 10 miles back to the hospital and again 10 miles to the drug store due to my pain level. I went home and took ibuprofen and some Valium that I had. I called my PCP the next day and went in to see him and he advised me to see my oncologist, whom I called and got an immediate appointment with the Nurse Practitioner working. She advised a CT, I agreed, called the same hospital and I went over for the test. A month’s time was lost between my first pain and the CT findings of metastatic breast cancer to my spine and ribs. Thank God for that Nurse Practitioner and my PCP for pushing in the right direction. I had not even considered metastasis during those few weeks. When I received the bill for the ER physician, I called, wrote, and complained about his lack of care and refused to pay the bill from his group. After numerous responses I ended up paying half of what I owed because I was too distressed to continue the argument with his group. Being an ER nurse I knew he could have easily ordered a CT for me during that visit but without touching me he ‘blew me off’. Unfortunately, I have seen a lot in my years working in different ERs – some doctors are excellent and some are very much less than excellent. It is a shame that there is a cover-up within the medical community when it comes to the doctors and their fellow doctors! Unfortunately, even being a nurse didn’t save me from an incompetent ER doctor! Thank you for being courageous and telling your story, I am just so sorry that you have this story to tell.
Im only going to tell about two of my experiences with my close calls to what I will call Idiotical Medical Mistakes!!! At the moment I cant recall exact dates but I will tell you what happened.
On one visit to the hospital for chest pain Ian IV was started,,well the chest pain got better but I began to feel very sick and had a hard time focusing my thoughts!! Well I looked up at the IV bag and noticed it said glucose !! I immediately knew what was wrong I AM A DIABETIC !! I ask the nurse about the IV and she said it was suppose to be saline !!My wife checked my blood sugar with my own meter(Because they said it wasn’t necessary) my meter just said HI which means it was over 500 !! Ok now for number two which happened Nov. 2013.I was admitted for double Pneumonia ! Well I had given my drug list while in the ER ! One of my meds is Lyrica 225mg one tab three times daily !!Well when the nurse brought my first rounds of meds I looked before I took !! I noticed that instead of one Lyrica 225mg there was three!! So I told the nurse and she very politely said, “your chart says three caps three times daily !! I informed her that wasn’t right and told her I was already taking 75mg over the recommended daily dose of 600mgs, She said No sir this is what the doctor wants you to take !! After another plea for my life I gave up and put the pills in my mouth and pretended to swallow when she left I took two caps out and put them in the bedside drawer ..I continued this until her shift was up !!I thought NOW I WILL get results, NOT!!!!I even had her to send someone from the pharmacy to come to my room..When they came I explained to them my plight to NO avail !!They insisted that that is what the Doctor wanted me to take !!So I continued to pile the caps in my bedside drawer !! When the Doctor came in the next morning I Knew I would GET RESULTS ,,NOT!!!She insisted that was what was on my records !! So for Eight more days I piled up the caps in my bedside drawer!!NOONE would listen to me the whole time and I PROMISE you I am not exaggerating !! Now you know as well as I do what happened was somebody misunderstood me in the ER or they wrote it down wrong ! When I was released I went to my primary care Dr. He said he wasn’t sure what it would have done to me had I taken ALL that Medicine ,,but that it wouldn’t have been good if I would have lived through it !! I TOO am sorry I even have to tell of this experience !! Anyone who is reading this ALWAYS ALWAYS look at what someone is giving you and be familiar with what your meds look like !!
Karen, I cry for you, I cry for me, and I cry for all others in this same situation. I was told “no signs of cancer” after every mammogram for years, even though I could point right to the spot that I KNEW was suspicious; I demanded (and received) enhanced films and sonograms each year, yet kept being told there was nothing there. I wish I had known at the time of another test to demand, even if the insurance would have denied payment – what is the cost of an MRI or other scan compared to one’s life? I changed PCPs, hoping someone would suggest another test. When DCIS was finally diagnosed, then it was suggested that a PET/CT was in order, which showed extensive spine and rib mets. I was told “You didn’t fit the profile” and was infuriated to hear that, as I had told ALL doctors that my mother had breast cancer. I have found that doctors give more “shrugs” than answers and THIS IS WRONG. Thank you for your “Lessons Learned Checklist”. My heart is with you.
I have been taking care of my mother four about 4 years taking her to her regular pcp and pain doctor for back pain. My mother was in and out of the hospital for many reasons related to fatigue, back pain, uti, and thats just a few. My mother is 64 and looks 80, mostly her pcn would say was take her to a nutritionist. My mom is so frail, on oxygen and in a wheelchair from pain. Hey weight ranged from 65-85 pounds depending on how sick she would feel or bow much pain she was in. About 7 years with her pcp she had breast cance for at least 3-4 years. I found her a new pcp about 2 months ago and after a serious of labs, xrays, procedures and then biopsy she was diagnosed stage 3 breast cancer. My mothers overall health and wheight my not make her acandidate for kemo or radiation which her surgeon is requiring befor he operates. My family is very sad as we have struggled to keep my mom alive and healthy. I see the look in all the doctors eyes like she is a lost cause and its hard for me to belive different. I think it will be a mirraculous if she was to live through treatment and surgery. Im so sad her pcp did not take better care of her and gave her a better chance of beeting this if he had just diagnosed this years ago!
Hello Karen,
Firstly thank you for allowing me to read your story. My wife Julie experienced a simlilar situation in the U.K. Julie first had breast cancer some ten years ago and was treated successfully at that time Shortly after five years she started to experience back pain and was treated by her doctor for arthritis. Julie expressed her worry that it may have been a return of cancer but her doctor did not take her seriously and did not take blood tests. Many months following continuing physiotherapy which aggravated her condition Julie was admitted as an emergency patient by myself to hospital where she was diagnosed with breast cancer in her spine, hips and liver and was told she was terminally ill with little chance of survival. To adult insult to injury the doctor admitted making mistakes and wished her well. She then had to undergoe spinal surgery to avoid being a paraplegic. Julie survived three years with treatment and my loving care. I investigated through a legal expert wether I could sue for negligence but was told that whilst misakes occurred negligence woul be difficult to prove. Like you that didn’t help Julie bit it as about time the medical profession started exposing and dealing with medics that fall short of the standard expected of them. As a retired fire officer if I had made similar mistakes in my position I would have been sacked! I hope my story gives you some comfort that you are not on your own and I truly hope that you keep on living your life as best you can without letting the disgraceful medics ruin the happiness that you have remaining. Stephen
Dear Stephen. Thank you for the note.I am sorry for your loss.
I am sorry this has been so long. I was just made aware of the comments.
I participated in a (I think 5th annual) meeting regarding medical mistakes. There is a concerted effort by many in the US to reduce medical errors.
I believe it is now the 3rd leading cause of death.
I know of several organizations looking at how to decrease or learn from errors. There is an annual conference called Diagnostic Error in Medicine. They just had their 8th annual International Conference.
I am doing fairly well, I just moved into the more toxic chemo and hoping for the best. I have been living the best life I can. Fatigue is and always has been my biggest symptom. I hope you are doing well. All my love. Karen
So sorry to hear of this. I’m afraid it is all too familiar. I live in the UK, and my oncology team failed to spot spread to bones, peritoneum and skin over a six year period. I saw them every three months. I am pursuing the matter as I need justice but finding now that expert witnesses are blocking it as they are medics. There are such things as medical guidelines, deviation from which may constitute negligence.
My oncology team left me for dead. My old cat had better treatment when he was I’ll. It’s because they are the intellectually lazy, many are high achieving aspergers possibly and also make value judgements, and they want to cut costs in my personal opinion.
It’s just the old boys network at its worst showing a carelessness which is not only negligent but verging on criminal intent in my opinion. I don’t normally rant and rave like this, but it is more prevalent than we realise.
Dear Jayne. Thank you for your comment. I am sorry this happened to you.
I am sorry this has been so long. I was just made aware of the comments.
I participated in a (I think 5th annual) meeting regarding medical mistakes. There is a concerted effort by many to reduce medical errors.
I believe it is now the 3rd leading cause of death in the US.
I know of several organizations looking at how to decrease or learn from errors. There is an annual conference called Diagnostic Error in Medicine. They just had their 8th annual International Conference.
These are the true hero’s.
I found it impossible to find an expert witness and gave up on any legal route quickly. Doctors will be witnesses for big pharma and healthcare institutions but are not often available to a person. I wish you the best. In the US, the cost of bringing this to court and finding expert witnesses were clearly not an option for me; not to mention the mental anquish. It was very hard for me to accept this and I kept pushing.
I wish you all the best.
Karen
Karen. I am so sorry to hear what you’ve been through. Where are you at with your cancer?
To whom it may concern :
I recently lost my dear Partner Jenny of 25years to metastatic Breast cancer. 2009 a Mammogram said she was clear; 1999 she had a small lump (left breast) removed 2000 by lumpectomy and followed by 5 years Tamoxifen.
Because she was aged 71 years in 2012, no Automatic Reminder was sent to her (we were unaware that she could have asked for a Test anyway-who would think of it anyway after 3 years ?).
A large malignancy was found in her (R) breast following a chance visit to the GP surgery for a bruise pain.
Anguish for me is that this probably could have been seen if a Mammogram had been done in 2012 – and saved her life. Sadly, the cancer had spread as Metastases to Bones and liver-too late to save her, she was Palliative care and died this August.
Is this a familiar picture – why aren’t people called back for Tests, regardless of their age.
We can’t all remember 3 years later to “call in” and ask for a Test anyway. I would be interested to learn if this sad story connects with others.
Thank you for listening.
Christopher.
Dear Christopher. I am sorry for your loss. This happens all too often. It’s particularly agonizing when we all know it could have been prevented.
I have just been made aware that medical mistakes are the 3rd leading cause of death in the US. So many are working to change this but it’s hard to get anyone to admit to a mistake.
For me, I had mammogram after mammogram and should NOT have ever had them. I have dense breast tissue and doctors know that cancer cannot be seen on women with extremely dense breast tissue.
I many states now, the beast cancer report has to tell the patients that dense and extremely dense breast tissue may not be detected in a mammogram. They are asked to talk to their doctor about that. The responsibility is still on the patient – not the doctor who knows this.
Whenever the word mammogram comes up, I tell them about dense breast tissue. Often I send a link provided at the end of my document.
I am so sorry for your loss. Karen
I agree with the gentleman Stephen regarding his wife, Julie. A very sad case, too, and, as a former Nurse of some 30 years, we, too, would soon have been “hauled over the coals” for a lot less than some seem to get away with.
It’s high time the word “accountability” had real meaning, and, in cases where there has clearly been negligence and/or inexcusable mistake, those responsible need to be made accountable to Relatives and Loved Ones.
Not hide behind the fact that they may be “well respected” in their field, or otherwise “beyond reproach”. We require definitive answers which will at least help towards “closure” and some peace of mind.
Kind regards to all concerned,
Christopher.
Dear Karen,
Reading your story rips my heart apart! If one has never gone through such as this, then it reads like fiction. It seems impossible to fathom in this medical age! I see that your article was published in April 2013. It is currently October 2015 and I am wondering how you are doing. PLEASE, please (if you are able) let us hear from you! I want to tell you (and any others who might read your article to gain knowledge) about my mom as well. She has asked me numerous times if we could sue for medical malpractice and although she doesn’t have a vengeful heart, I understand why she would want to sue. I have told her it wouldn’t be worth the time because they would say pretty much what you found out when you tried. Mark my Mom’s story up to just another missed diagnosis, or oversight, or misjudgment, or mistake, or injustice, or eventual murder. IMO, murder.
My mom was dx with stage iv breast cancer in March 2012. Over the previous years, she always had regular mammograms and multiple benign cysts had been removed. As well, she had more fine needle biopsies than she or I could possibly count which had always proved to be benign. Nevertheless, (with her background) that still should not allow a radiologist to give a patient a dx of “PROBABLY BENIGN, come back in six months”…We all should know a dx is either benign or malignant! It CAN’T be “PROBABLY BENIGN!!”
Mom had been feeling fatigue and pain for quite a few months, then she began swelling in her abdominal area. This was brought to my attention on a Tuesday morning in late February when she and my dad came to visit. We were in the kitchen when mom pulled up her blouse to show her tummy to me when she asked, “what could this be? Your dad thinks I may have a tumor or something.” [I had married a family practice doc so she and dad were always asking us questions.] I felt something was terribly wrong, but didn’t want to think the worst and certainly didn’t want to alarm her. I asked her to sit down and gave her some Tums and Gaviscon and indicated she may have indigestion telling her to “just take one of these.” I then told her that I needed to go the bathroom and would be right back. I immediately called my husband and told him that mom needed a CT scan of her abdominal area ASAP. He asked why and I told him, “Mom looks like she is 6 or 7 months pregnant!” He quickly called and made an appt for Wednesday (next) morning.
My mind was swirling. My husband had ordered every blood test he could think of and all had come back within normal limits. She was anemic and given two pints of blood and no blood had been detected in her stool so why such a blood loss?? She had been going to the same GYN that had delivered me as a baby and that was 45 years ago! Her GYN was over 80 years old. I’m sorry, but there comes a point in which someone should retire….voluntarily. I am not beating up on the elderly population. Trust me, I love elderly people. I just feel that newer technology and advancements in medicine can be better understood by younger practitioners. [My apologies for personal feelings indicated here.]
I called my husband about noon to find out if he had heard anything from radiology. He said no, then his “doctor line” rang and he said, let me go, I’m getting a call I need to take. Well, he thought he hung up on me (cell phone), but I was still holding and listening. I heard him say, “What? No, she’s my mother-in-law. Wait, did you say, it’s all over the place?” I almost fainted. I was trying to order lunch for my daughters to take to their school and was thankful that it was written down because I was sobbing so hysterically that I couldn’t speak. I managed to get their lunch, drop it off and then pick up an anniversary card for my husband…our 6th anniversary was coming up the following week. My husband didn’t realize I had stayed on the phone so when he called me back to ask me to stop by his office, I was (still) sobbing. I told him I overheard the conversation. [By the grace of God, I was able to drive over to his office.] He told me that I needed to get myself together because my parents were coming over and they had no idea. My husband didn’t tell Mom and Dad that Mom had cancer, but said she had an appt with oncology the following morning. The oncologist (without ever mentioning staging) said she had metastases to her breasts, liver, spleen, kidneys, pelvis, female region, and spine. He gave her an option. He said, “you can do nothing and I would say you have 6 months or less, so we would have hospice come to your home to take care of you OR you can choose chemo and we have no way of knowing because only God can decide.” I thought my dad was going to pass out or have a heart attack..his face was bright red. [Dad had been dx with early stage prostate cancer 8 years earlier so he had organized everything so Mom wouldn’t have to worry…this was clearly not in Dad’s plan.] Mom looked directly at me and I shook my head yes, smiled at her and said, “Mom, you’ve got to fight this…God will take care of you!” She and Dad agreed so she had an appt the following week for a biopsy of her liver to determine the type of cancer. It was dx mostly breast with maybe ovarian as well, but chemo would treat both. Due to extent of mets, surgery was not an option so Mom began chemo the following day on Friday. [This was a bam, bam, bam sequence of events.] Mom had a rough time going through chemo for the first four months. She became neutropenic because she accidentally scratched herself while wiping on the toilet and obtained MRSA. After an IND, she spent the following 11 nights in the hospital, many of those not knowing my dad was even there although he had never left her side. [They were married in June 1959 and are never apart.]
To date, Mom has undergone countless chemo infusions Her numbers wax and wane so for the past 18 months, she goes every other week for chemo. Mom is still fighting!! Praise God!!
Karen, I don’t know your current health status, but am praying for you and your family. Please update this site if and when you can. Love, hugs and prayers.
P.S. After her BC dx, I called her former GYN (the one who delivered me) and asked for her medical records. I told them that Mom had been dx with stage iv breast cancer and that she would no longer be needing their services. Her former GYN has since called and spoke with Mom a couple of times. He even sent her a letter wishing her well, no apologies or owning it. The audacity just rips right through me. Although I know HE wasn’t the one who dx her mammogram “probably benign”, it was the radiologist with whom I have never corresponded. The doctor ultimately looks over the radiology report and gives it an ok or return for more testing. Both failed miserably. The radiologist just dismissed her “spot” as “probably benign” and went on about his life. Yes, I have wanted to visit this individual and introduce him to my mom so he can personally see her and maybe remember what that one dx has done to a lady and her family. I just keep praying for peace within all of us and restoration of Mom’s health.
Again, Karen, thank you for sharing your story so that others may be enlightened. God bless!!
Dearest Karen.
Thank you for the note. I was just made aware of the comments on this post and am getting to them one at a time.
I am so sorry and hope your mom is doing ok – I realize this is 9 months after your post. I am so sorry for your pain and all that your family has gone through. The mistakes are unacceptable. It truly breaks my heart to hear stories such as this.
I know Terry and Joe Graedon are one of many leading an effort to help prevent them. They have been have annual meetings for 8 years or so now.
I’m not sure how long this information has been “out there” but medical mistakes are the 3rd leading cause of death in the US. Most Americans think we have the world’s best health system and it’s quite the opposite.
I looked at suing but no one would even consider my case. I think you have to do something so clearly wrong (like cutting the wrong leg off) before anyone will consider a case. And they are time consuming and expensive. Most told me Duke would have 10 doctors refute anything my expert witness would say. So I gave up on that – quickly.
I see my primary care doctor around and he does not look me in the eye. I might call his name next time and ask him to look me in the eye.
Thank you so much for asking about me.
I continue working on letting the anger go. I still do deep breathing exercises to let the anger go. I breathe in love and goodness and fresh air and breath out my anger (to me it looks grey or black). I envision mother nature turning my anger into something good for the world. I usually envision blowing up giant balloons and sent them up like a helium balloon.
After my 2 years of rage and anger I had to let it go to live my best life. Looking back, I can’t believe so many friends stuck with me. I have great friends.
I had done very very well on existing cancer meds. I travel extensively. I have a dog and she gets me out and about every day (even though she has a giant back yard). I have seen my third oldest niece graduate from college (double major with 3.89 GPA). She is doing an internship in NYC and plans to go to PA school. She wants a big family.
My oldest niece (oldest of twins) has had two beautiful babies. I visit as much as I can but I get at least 2 video’s every day.
I have made new friends and kept the old and I wake up happy and I feel loved.
I am planning another trip to Italy in Sept when it’s not so hot.
I have joined a support group and I LOVE THE SUPPORT GROUP. This group is invaluable. I tried to join a Duke support group but often no one would show up – including the leader of the group. I found this support group through a non-profit in Durham called the Cornucopia Group.
I feel I have the best oncologist and pain management doctor. My pain is managed. My biggest issue is still fatigue. I just started my first toxic chemo treatment called Ibrance (which Pfizer sells at almost $10,000 per month – 21 pills – 3 weeks on pills and one week off). My first three months were good. I had a tumor marker that was not good at all a couple of weeks ago. I am waiting to see the next one in 10 days. If it’s still high, I may get scans earlier than planned because I don’t want to take a toxic drug if it’s not working.
I feel fortunate that the cancer has not spread in any vital organs. I feel I have had a great run considering my health at the time of my diagnosis. I do feel I am slowly getting in to a new stage of treatment. Many friends will not allow me to say that or “put that out there” but I need to say what I feel. It is not stopping me. I am still walking every day. I’m also painting in acrylics. I can only paint abstracts but watching Bob Ross on YouTube and learning a lot.
Days are good. Some days I just sleep most of the day.
I really wish you the best and I send you all of my love.
I am heading to a vigil tonight for the Orlando shooting victims.
Thanks you again for writing. I am so sorry for what your family has had to endure. I really hope my lessons learned helped. I also have a lot of medical people in my family and they did not find it and lived here and we saw each other constantly.
After I wrote this I thought of another great question for a patient – WHAT ELSE COULD IT BE? I would never let a care provider get away with “probably”. I would of before 12/2011.
All my love Karen
Hello Karen,
I am also a patient at Duke and have been since 2008. I had a benign neck tumor removed then, but the pre-surgical MRI revealed growths on my thyroid. I was not told about this until AFTER the surgery was completed…and told we would follow it. In 2013, it was diagnosed as thyroid cancer, but only after the FNA biopsy was done on the wrong side, I found it in my chart, and questioned the ordering physician about it. In 2009 I was diagnosed with bladder cancer after an incidental finding on urodynamics study. Both were removed early enough not to cause major issues. However, in 2011 and again this year, I experienced long periods of fatigue, hypersomnia, weakness, memory loss, and general malaise. I saw a bajillion specialists and no one could figure it out. In 2011, my son was diagnosed with mono. I asked my PCP to test me for it. He said it was nearly impossible that I would be as old as I was and have mono. I insisted that he humor me. The test was positive. It was positive again in 2015 after I suffered for over 6 months before an outside provider tested me for mono again. So here I am two years after my thyroid cancer, feeling like crap, with blood counts that have been high for 18 months (WBC, RBC, Hct, and Hgb)..my blood pressure is steadily rising and I have had to stop doing all the things I love because I don’t know if I’ll be able to get out of bed that day. About 90% of the specialists I’ve seen have encouraged me to exercise (which puts me in bed for a week) or asked if I’m depressed (I actually took antidepressants in 2011 when I had mono because I assumed I was going crazy). I’m not depressed..I’m pissed. I’m pissed that I have 15-20 minutes of the provider’s attention when clearly I don’t have an open and shut case. I’m pissed that when they order the standard tests and they all come back normal, I don’t see them again for 4 months when they run some more tests. Meanwhile, I’ve quit my job, had difficulty just keeping laundry done and dinner made, and some days I have to walk with a cane because I mysteriously can’t move. The lack of urgency and “out of the box” thinking by my care team has left me wondering if I am, in fact, going crazy. I know when I go in, they assume I am depressed or drug seeking for the pain. They tell me to take advil (even though my chart screams that NSAIDS screws up my platelets and irritates my ulcers). Truth is, I don’t want narcotics. I have a pile of them from prior surgeries and they make me so constipated that I get to do manual disimpactions…no thanks. I feel like the providers aren’t allowed enough time to really THINK about your case. They get 20 minutes and then on to the next person. I have taken to google to try and figure out what’s wrong myself (who gets multiple cancers in different places and has mono confirmed 3 times?) My worst fear is that I end up with a story like yours. I feel like we are playing pin-the-tail-on-the-cancer and nobody is taking the blindfold off. I hope
Dear Marie. Wow. I completely understand you anger. It sounds we both have been through hell. Primary care at Duke provide only given 15-20 per patient and that includes writing up the visit. I had to admit this was not the doctors fault – but the administrators just trying to make the most $. However, you make such a good point. You had a special case. So did I. Doctors should have given us more time and consideration. Also, I should have kept a copy of all of my records and kept on top of them. I could have seen the results of the MRI. One question that was asked when meeting with my Primary Care provider is – Karen obviously was getting worse and worse, did you EVER look back. He said NO. He said he would spread the word and use my case as an example. I’m quite sure he speaks of it as little as possible because I have found he is a coward. I see him and he does not look me in the eye.
I suffered extensively like you. It feels like this was yesterday. I was seeing a psychiatrist as well as a counselor and asked if I was crazy. I really had to consider that. I really thought I might be going crazy. I was looking for a way out.
I am on anti depressants and will stay on them. I went to FMLA when I could no longer get up and walk. I was approved right away and then they said I had two years only – because I was approved for depression. I just hoped the real problem would be revealed before my two years was up. If not, I would destitute. They found the problem right under the two year mark.
I know this is recent. I was awful to be around because I spewed anger. I thank God for the people who stayed with me and listed to the anger.
After a time, I knew I had to get rid of the anger. Anger was killing me and I only have so much time. I have just started a more toxic treatment. Fatigue is my most difficult side effect. My pain is under control. I haven’t had to change the dose of my pain meds much over the past 5 years.
My friend gave me an idea that really helped me get anger out and love back in. I couldn’t have a quality of life with the anger. I lie down and visualize breathing in good clean air. It circulated throughout my body and when I exhale, I fill a huge balloon. I would feel gray air coming out of my body, then black air. When I was done I would release the baloon(s) into the atmosphere to change and do something good by mother nature.
We have just found out that medical errors are the 3rd leading cause of death in the US. I am not at all surprised. The medical community knows this.
I have been contacted by companies to tell my story but they were eventually blocked by the Healthcare system. They were blocked even when they thought they had access to a healthcare system.
I wish you the best. I thank you for the note. All my love.
I was deeply impacted by your story. I intend to do what I can to spread the word about your very wise and insightful Lessons Learned Checklist. I am touched by how magnanimous you remain in the face of such institutionalized stupidity.
Dear Rick. Thank you for the kind note and for spreading the word. I was very angry and spewed anger for almost 2 years. I could not write this article the 2 years after my diagnosis.
I apologized and thanked everyone who stuck with me. I know the anger got old for them. I can understand that.
Thanks to social media, I received a gift from a college friend I hadn’t spoken to since college. He has glioblastoma (and he is still doing well). He was misdiagnosed for years and helped me with meditation and getting over the anger. It was only hurting me. I am doing good things for my body.
Since the article was published, I have continued to travel and see family and friends and the world. I got a dog and she needs to walk every day. I have the most wonderful friends, family and neighborhood community. I feel blessed I’ve done well for this long. I just started a treatment that is harder on my body and I feel tired and am having side effects for the first time. It’s toxic and I’m not even sure it’s working at this point. I have THE best oncologist and pain management doctor. My biggest symptom is still fatigue.
From time to time I run in to my primary care doctor who was so awful and said I did not have cancer when my MRI said otherwise. He cannot look me in the eye. He could have been a much better person. He should look me in the eye and even check on me. I actually feel sorry for him.
Thanks again for the kind note. All my love. Karen
hi thanks for your story, my friend had breast cancer 5 years ago and now she complains of terrible back pain which has been going on for about two years now and got worse couple of months ago. The doctors have been giving her countless a mouth of pain meds but she requested for mri scan which confirmed that she has a stag iv bone cancer please I would ur advice or anyones advice that’s gone through something like this on the next step for her to take thank you
I’m so sorry this happened to you and unfortunately me. I’m 35 and a mother. I’m dying of what was chronic leukemia that’s now acute. For 20 years I’ve been in miserable pain. I was labeled a drug seeker by a walk in clinic doctor at my primary care facility. No one ever told me that and they continued to treat me as a crazy person. Any other doctors office would apparently see those notes from that one doctor in my file and treat me like a crazy drug addict. I was told to exercise to relieve the pain and see a therapist. The bruising over 30% of my body was dismissed even when I could touch my hand in front of the doctor and bruise immediately. until last month when my hip bone shattered. The hospital found I had untreated leukemia that was obvious and now beyond anything reversible. I had vertebrae fractures, some tried to heal incorrectly from years of non treatment. My liver is destroyed. My doctor threw up when I confronted her. I will eventually leave my children motherless. I finally got my diagnosis and felt vindicated but at what cost.
Dear Anthonia.
I am sorry I did not see your note earlier. I am terribly sorry to hear about your friend. I have breast cancer that spread to my bones. It was in every single vertebrae, hips, pelvis and ribs and sternum, etc when I was diagnosed.
I do not know from your note if this is bone cancer or breast cancer spread to her bones.
I can tell you I know I had bone cancer in 2006-2007 and was not diagnosed until 12/2010 – six years later. Once I had a one hour surgery called kyphoplasty to fix my 2 breaks and once I started a cancer treatment my back is good. I also get an infusion of zometa every 3 months. Zometa slows the breakdown of my bones and has done a great job! My back has been fine with minimal medication.
Initial radiation also helped me in 01/2011.
I have been fortunate and my body has done very well on the treatments available.
I am just now starting a more toxic treatment so we will soon see if it is working. It has side effects but not bad enough that I wouldn’t take it.
I am grateful that the cancer has remained only in my lymph nodes and bones and has not spread to my vital organs.
I hope this helps. If you would like more info or want to talk, please send a message and I will check these messages again very soon.
Karen
I, too, am terribly sorry for your situation. I found this site when Iwas researching medical mistakes after a friend’s husband recently passed away from metastatic kidney cancer (I think). During his last days one of his doctors asked him why he never received treatment for his cancer when it was found years earlier. He responded that it was only recently found at which time the doctor told him they found his kidney cancer after an MRI he received years earlier while in the hospital for a supposedly unrelated reason. It turns out that the cancer was identified at that time but he was never informed! He was in his late 50’s and passed away leaving two teenagers and a wife and many other loving friends and relatives.
My most significant question or concern right now if why you haven’t filed a law suit? It sounds like you have been told that it wouldn’t be worthwhile or you can’t. I don’t understand. I believe this family sued and at least received compensation. The purpose of the lawsuit is to make them accountable and I believe it would make the medical system more likely to change their behavior. They need to be punished!!! And you need to be compensated for their indifference! I am not an attorney but I have a hard time believing that you can’t do this. Maybe you need a second opinion about this as well. These things rarely go to court. The hospital and doctors are likely to settle out of court with you because it seems under the circumstances that they would not win this case.
Hi Karen,
I was deeply saddened when I read about your situation. As a future nurse and healthcare team member, I want to make sure we learn from your story to prevent it from happening to others. We are trying to make progress to learn from your story and other stories like yours. As part of one of my courses, are we doing a project on medical errors to raise awareness and prevent them from occurring again. After reading about your story I decided to use your case for my project because I truly believe this situation should have never occurred and should never occur again. One of the best ways to do this is spread the word and make others aware of a situation like the. Without proper communication, you were put through more suffering than you should have ever experienced. I wanted you to know that the future of healthcare is learning from your case and you are making an impact to prevent this from happening to others. I wanted to reach out and see how you were doing and if there is any update you can provide?
I had a very similar experience except I have mostly been involved 8n my health care but none of them listened.I truly believe that had they listened my cancer would not have been so advanced, but who really knows. I was told by a healthcare ” professional”,” at my age it was probably benign” and cancelled all xrays ordered for me. What a great health care system!
Dear Mrs. Karen,
I was unbelievably moved by your story. The years of pain that you endured could have been prevented and should have. I am undergraduate working on research paper that addresses the flaws in the current health system and a possible machine learning system that could aid in reducing more misdiagnoses from occurring. I am hoping with this research no more individuals like yourself are harmed by the mistakes of physicians. I was wondering if you would be able to be apart of my research paper. In terms of advice and if I am accurately portraying the patients point of view in paper. I would really appreciate it! Thank you so much for sharing your story.
Thank you,
Simrun
Thank you for sharing your story. I’m kind of in the same boat. Over the past 3 years I have been sick. It started as fatigue. I brushed it off because at the time I was running my teenagers around for sports and clubs at school. I was also a cheer coach. Then came the episodes where I would feel horrible and be in bed for a couple of days tired and sick. Then things got worse. I started getting dizzy, high blood pressure skin issues. I ended up quitting my coaching job because I couldn’t physically do it. Then I started gaining weight. I was swelling so bad, I went to my dr they diagnosed me with high blood pressure and to see a cardiologist. My heart was fine. By now I have gained 50lbs within 6 months. I no urge to eat. I was also in pain in my back. I told my dr all of this. She said she didn’t know what was wrong so sent me to physical therapy for my back pain. Then I started getting pain in my side of my breast, under my arm pit it went in to my back and shoulder. She said it was because I was getting old. I was 40 at the time. But she did find a lump where I was having pain. So sent me to get an ultrasound and mammogram. Because of where the lump is they had to use an ultrasound. So did that. The mammogram showed I have dense breast tissue on my right side and that there was a lump where I was in pain at. The 9o clock position in my breast but the radiologist said that the lump is probably a fat deposit and I shouldn’t be worried. But need to check the lump every 6 months to see if it grows. I’ve been doing that a year now. Each time it’s been a little bigger. Now 2020, I went in for my 6month ultrasound and the lump seemed to vanish. I still feel it. The ultrasound tech told me she couldn’t find it. She also said that the country is in the middle of a pandemic and I shouldn’t worry about fat deposits. I felt shamed after that. But now I still have the pain under my arm. I’m so worn out that trying to clean my house is like I’m running a marathon. I have skin issues, my back hurts, I’ve lost some mobility with my legs. I get dizzy spells. My liver and spleen are enlarged. My spleen enzymes are elevated. I have constant headaches. I’m also on hormone replacement therapy. I feel I have something serious going on and no one is listening to me. The dr won’t order an mri or anything because the radiologist said it’s benign. But I’m going to keep advocating for my health until they figure out. What is wrong.