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.
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.
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. 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.
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. 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.
- 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.