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Monday, April 9, 2012

Critical Lessons Learned: Metastatic Breast Cancer Misdiagnosed for Nearly 3 Years

Karen Holliman's story

This is my story and Duke’s story. It’s a cautionary story of my efforts over several years to identify the source of increasing back pain and extreme fatigue and to find appropriate treatment for its relief. As Duke doctors were my care providers at that time, it’s also Duke’s story of medical judgment, decisions and institutional processes.

This story includes necessary background information, critical lessons learned after meetings with my key care-providers and other noteworthy information.

Since working at Duke for about 14 years, I selected its HMO insurance. I had issues with fatigue and back pain throughout 2007. In 2/2008, I went for a “same day” visit to a Primary Care Physician (PCP). This PCP ordered a MRI. My MRI showed concerns for metastatic disease in several areas of my back. A bone scan was ordered in 3/2008 which did not correlate with my MRI.

Tragically, I was NOT diagnosed with cancer in early 2008. My PCP reviewed the 2 radiology reports and believed the MRI concerns for metastatic disease were ruled out by the bone scan results. Radiology did not provide any further information to my doctor. My doctor didn’t contact Radiology and Radiology didn’t contact my doctor after the bone scan. My PCP told me I did not have cancer. I believed I did not have cancer.

I had over 50 doctor visits over the course of three years as my pain increased. I believe people who know me will agree that I am persistent; intelligent; and quick to try to resolve problems. These characteristics were utilized in the process of trying to get to the root cause of my issues. I should have had a family member or friend serving as my patient advocate. At my request my sister began going to appointments with me in 2010.

I was diagnosed with fibromyalgia which never felt right to me. This was added to my Electronic Health Record (EHR).

As early as 8/2009, my Therapist’s notes say, “She feels angry and frustrated that she is doomed to feel the pain and fatigue until someone can tell her differently.” By 2010, I was often unable to walk without assistance or rest due to agonizing and unrelenting muscle spasms. My Psychiatrist’s notes on 6/2010 say “For about a week she has had incapacitating back spasms”; “feeling very low”; and said she “didn’t want to live like this.”

I went to the Emergency Department (ED) twice in October of 2010. The first visit was appalling and I’ll explain later. On the second visit my Pain doctor called ahead ordering an emergency MRI. It was denied at the time but scheduled days later.

I received the phone call from my Pain doctor on 11/3/2010. He indicated that my MRI revealed the diagnosis: widespread cancer. Specifically, cancer was seen throughout virtually my entire spine, sacrum and pelvis, and I had a compression fracture. This news was terrifying and I became outraged as I realized my 2/2008 MRI concerns were accurate and I had gone without treatment for nearly 3 years allowing the cancer to envelop my spine. Previously, I had heard and felt that some people thought this illness was “all in my head.” I felt a strange sense of relief because my illness finally had a name. I did not expect that I would feel better with treatment but I feel much better today.

On 11/24/10 I received a procedure called Kyphoplasty to fix two compression fractures in my back. I walked out of the hospital hours later with astonishing pain relief.

Soon after this procedure the root cause of my symptoms was found. I have: Stage IV Metastatic Breast Cancer (ER+ PR+). My prognosis was estimated at three years to live depending on response to treatment. My Oncologist at that time told me to stop taking my Hormone Replacement Therapy (HRT) which I had started in 2008 and said “that is half of your treatment.” I became incensed because not only was the diagnosis missed in early 2008 but I was feeding the cancer the hormones it wanted to thrive. Also, the realization that I would not be around to care for the children of my nieces was devastating.

I received two weeks of radiation which provided more pain relief.

I’ve spent precious time struggling to understand how my diagnosis was missed. I’ve struggled with the knowledge that the delay in diagnosis resulted in a delay in treatment, which could have alleviated so many years of intense suffering, and potentially added many more years to my life (especially had I known to stop taking HRT).

I first contacted a Legal representative who said my case was a series of unfortunate events and no settlement would be offered. Legal did get expert witnesses to review my case. I was told these experts supported the doctors and were complimentary of my PCPs care.

Later, because of my anger and plans to protest, a high level doctor put me in touch with Legal again to meet with my doctors to discuss what happened. I believe he wanted to know where the system had failed and he wanted it fixed.

The Legal representative arranged meetings with key doctors around 1/2012. My family attended. I worked diligently with Patient Advocate Ken Farbstein to prepare for these meetings. My PCP and Orthopedic doctors admitted mistakes / missing the diagnosis and deeply regretted their errors. These doctors came up with ideas for improvements. These meetings were healing for me and I believe were healing for the doctors as well.

The one exception was the meeting with Radiologists. The Radiologist who read my MRI didn’t answer key questions, often shrugged her shoulders and giggled throughout the meeting. My family and I were incredibly offended. Because of this Radiologist’s behavior, we scheduled a meeting with the head of Radiology who was extremely thoughtful and we discussed opportunities for improvement.


Primary Care Physician (PCP) Meeting:
In meeting with my PCP, he said “I’m not a radiologist; ... It’s hard for us to say which test is the best test.” Yet, he didn’t talk with either Radiologist after my MRI and Bone Scan in 3/2008 and vice versa. Without better communication and teamwork between Radiology and generalists, this could happen to other people.

I yearn to go back and effectively question my doctor about the MRI and Bone Scan in early 2008. Some lessons I can share are:

- If you have any Radiology report which indicates possible metastatic disease or something equally alarming, make sure you get a definitive diagnosis even if you have inconsistent findings in another report. Rule out the worst case scenarios. Ask your doctor to speak with the Radiologist(s). Communication is so critical at this stage.

- I saw my PCP or went to Urgent Care averaging almost monthly for nearly 2 years. If you are not getting answers and are being referred to many specialists without any further answers ask the PCP to go back to the beginning of your record and review it with colleagues. In my case, the answers were already there.

- I sensed quite early on that I wasn’t going to get a definitive diagnosis from my PCP and I should have made a change. If necessary, go to a new doctor. Consider seeing a private PCP who is not affiliated with a large hospital. I am now seeing a private practice PCP who seems more empowered and seems to take more ownership in the care he is providing.

Orthopedic Meeting:
I was sent to an Orthopedic doctor in 3/2009 who could have detected the metastatic disease that was missed in 2008. My pain level was not assessed. I felt this doctor was rushed and insensitive and as a result, I filed a patient advocate report. At the time I asked them to hold my report until I reviewed the doctor’s report. I was concerned, given her interaction with me, that she would say something was wrong with my head, which she had verbalized to me during my appointment. I forgot to call back and ask that the report be released.

- Tell the doctor how you feel or make use of patient advocate resources. I regret not standing up to the doctor and not having filed the report right away. If I had filed it, my cancer may have been diagnosed earlier.
In our subsequent meeting, my Orthopedic doctor expressed deep regret and apologized that she didn’t take a “fresh look” at my case as she trusted what my other care-providers had reported. She said she had relied on my previous doctors who had made mistakes and said she too made the same mistake. She said what I had needed was a bone biopsy.

- Ask specialists to take a fresh look at your case and make sure they spend an adequate amount of time with you.

Emergency Department (ED):
In addition to the failure to diagnose my cancer for nearly 3 years, I had two visits with the ED. The first visit was appalling. I was never examined and was given two injections of Dilaudid and sent home on a Friday night still having spasms.

- I should have demanded to see another doctor and should not have left the ED without further help. The ED doctors asked me to leave twice and it didn’t feel like I had an option.

When I arrived and was being moved to my ED room, my brother witnessed personnel peaking around corners and doors laughing and heard one person mocking my moaning sounds. My brother was upset and confronted them. He said “Do you think this is funny? My sister is in excruciating pain.”

- We wish now that he would have taken names. We notified the head of the ED later.

The ED doctor didn’t update my Electronic Health Record (EHR) with the information I provided. The EHR read “No back tenderness.” “No acute distress.” I was given verbal instructions to use my bedroom for sleep and relations only. Because of the report, any payment was initially denied by my HMO. The visit was deemed “unnecessary.”

- An EHR is important but it can be a huge risk for patients if your doctor does not listen to you or use and update the EHR correctly. I believe had I gone to an out-of-network ED, for example, I would have been treated differently since they would not have had access to my Duke EHR. If you are not getting the care you think you need, ask the doctor questions. Ask about the basis for his/her decision(s). If it’s based solely on your EHR, then ask them to listen to you.

In meeting later with the Head of the ED, we felt that the ED was dedicated to addressing the issues.

Change in Insurance:
In October of 2010, I went on disability and changed my HMO insurance to a slightly more expensive option so that I could go outside of the HMO network to get some answers.

- If you are part of an HMO and having issues that are not getting resolved, consider changing your healthcare insurance so you can choose a different doctor.

Doctors are well meaning but fallible. It’s tragic that my doctors made a succession of critical mistakes.

- If you have a bad outcome, please speak with the institution’s legal representative to arrange meetings with your doctor(s). I learned a lot in my meetings. Doctors can make changes.


The mistakes made in my case were all preventable.

I believe this failure sheds light on a lack of basic communication and collaboration between care-providers at an institution that promotes patient safety and teamwork as part of its core values.

My family, friends and I spent several weeks writing a report. I submitted the 15-page document in 2/2012 to Legal that outlined my experience, included notes from meetings, and made recommendations for possible changes that could improve the quality of care provided and improve patient outcomes. Recommendations for change were offered in a spirit of compassion and concern for other patients.

I received a thank you note from Legal representative but haven’t heard any further news. The Legal representative didn’t provide me with any further information about how the document would be used or address compensation initially requested for pain and suffering and possible loss of years of my life.

Unless actions are taken, this could happen to others. It is my sincere hope that my efforts to secure such changes will make a difference for others.

With treatment, I am feeling better than I’ve felt in many years. I am always conscious of how precious life is and I believe that those around me have become more aware of that too. I am striving to live my life with more love, patience, compassion and understanding. I have a positive attitude most of the time. At night, my mind often wanders to how my life will end and that scares me. My cancer could spread to vital organs but my biggest fear is total paralysis given the damage to my back before my diagnosis. I am single and often worry about the cost of the in-home care that I will almost certainly need. I am not in much pain now but take pain medication daily and require a great deal of rest.

I will spend the precious time I have left working to educate as many readers as possible about the lessons I have learned. I will create more joyful memories with my family and friends. I plan on vacationing this summer at a beautiful villa in Tuscany with visits from those I love. Here is a photo of the villa just south of Florence.

I hope that my story touches other people’s lives. If so, my sharing this story will have been very worthwhile.


Anonymous said...

Thank you so much, Karen, for sharing your story. It is scary and eye-opening. And I have printed out your recommendations so that I can put them in place for my own family. Thank you so much, and all the very best to you. Sarah in Durham.

treatment of cancer said...

love this blog, thank you and keep it up!