Dear Lit Loves,
I am taking an opportunity to pause on the memoir reviews I usually write about on this blog as well as the updates I frequently give regarding the insanity of attempting to become a published author in today's traditional publishing world. As most people know I write about real life, real people and very real experiences. I especially want to devote this blog post to people and cancer patients in North Carolina. Unfortunately, I have lost two incredibly wonderful people recently not only to cancer, but also because of substandard cancer care. Both individuals who died were treated at the same cancer center and both suffered the dire consequences of oncologists who made poor judgement calls and a cancer center run by administrators who are more interested in their "excellent" reputation and bottom line rather than putting cancer patients' needs and care a priority..
First, I cannot stress enough how important it is when you receive a cancer diagnosis that you make sure you ask for a copy of your CT/MRI/PET scans and biopsy reports. You and your insurance company paid for them and you rightly deserve a copy. Do not be afraid to obtain a second opinion from another oncologist regarding your specific type of cancer, options for treatment and a precise understanding of what stage your cancer is. These are vitally important pieces of information you need to have to make a wise decision regarding your treatment as a cancer patient. Never be afraid to question any oncologist or to conduct research to find an oncologist that has a stellar reputation, experience and treatment outcomes for your specific type of cancer.
The first case example I'm going to discuss is a friend and former colleague of mine who began experiencing distressing digestive symptoms and suddenly one night found herself on the floor of a bathroom in serious pain. She called 911 and was rushed to the nearest hospital. It was discovered that she had a grapefruit size tumor in her colon that had actually broken through the colon wall and spread to an ovary. She received immediately surgery to remove the tumor, the ovary where the tumor had spread and a resectioning of her colon. She was in the hospital for three weeks for recovery. When the biopsy or pathology report was finally revealed to her, she learned she had a very rare type of cancer that is highly aggressive. Initially, her oncologist thought she would need no further treatment; however, when he presented her case to other oncologists he was informed that he better jump on treating this aggressive form of cancer via chemotherapy. My friend and former colleague successfully completed multiple rounds of chemotherapy and was able to return to work. Unfortunately, her oncologist did not conduct proper follow up visits with her and monitor her for recurrence of the cancer. She had no CT/MRI/PET scans following initial remission over a nine month period. As far as I know, a patient with her type of aggressive cancer should be monitored with scans every three months for a year once a patient achieves intial cancer remission. Nine months later my friend and former colleague calls to tell me that she thinks she has a stomach bug and she is having extensive difficulty with her visual acuity. I asked her what her latest scan had shown. She asked me, "What scan?" I was horrified to learn that her oncologist had not given any follow up scans to monitor her cancer after its initial remission. In other words, the oncologist let her fall through the cracks. By the time her primary care doctor sent her back to the oncologist when the stomach bug did not go away, a CT scan was finally performed and her rare cancer had returned. And it had spread throughout her colon, liver, pancreas, rectum and four tumors were found in her brain causing the vision problems. I urged her to go to a major cancer hospital in our state where doctors were well-versed in treating her type of rare cancer. She chose to remain with the oncologist who allowed her to fall through the cracks. He never leveled with her about how much time she had left to live even when she asked him for that information. She had a right to know that information. My friend and colleague died seven months later due to how pervasive the cancer had spread and the fact that it was so advanced at the time it was once again discovered that there was no treatment her oncologist found that would cure her.
In 2015 my dad returned to the same cancer center for a third recurrence of a rare lymphoma. He had been diagnosed in 2002 and treated successfully with six rounds of chemotherapy and monitored closely for recurrence of the cancer via scans. In 2010, a scan that my dad had discovered the lymphoma had once again returned and this time it would require a stem cell transplant. We had that stem cell transplant done at a cancer hospital that is well-known for its success with stem cell transplants. Dad's stem cell transplant proved successful. Last January in 2015 dad's lymphoma symptoms once again returned. Fortunately, he had a veteran oncologist well-trained in the type of rare lymphoma my dad had. It took the cancer center two attempts at a biopsy in order to reach the area where the lymphoma could be found. This delayed his treatment. Additionally, our family learned that my dad's veteran oncologist was leaving this local cancer center. New hospital management had arrived in recent years and my family and I noticed many well-trained and experienced oncologists leaving the cancer center. Now, my dad was going to have to face a new therapy that had only been available in the last couple of years without the veteran oncologist who had seen him through twelve years of successful lymphoma treatment. Dad would be seeing a newly-hired, novice oncologist. Dad began treatment with a monoclonal antibody treatment called Adcetris. I never liked the new novice oncologist dad was assigned because she was very dismissive to me when I asked her questions. She was very adamant that her way was the best and only way when it came to my dad's treatment. Dad successfully was treated with three rounds of Adcetris and then he had a CT scan completed to determine how well the treatment was working. The results showed no sign of the lymphoma; however, it did show that dad had a lower lung infection of both lungs. This is also known as pneumonia, folks. Dad's novice oncologist chose to place him on a low dose of oral Augmentin. His pneumonia grew worse and my mom called the cancer center to inform them she needed dad's oncologist to call her as soon as possible because dad's symptoms were worsening and not responding to the Augmentin. No one from this cancer center returned a call to my mom regarding my dad's case. I called the next day about this lack of follow up and was informed by the cancer center telephone operator that my mom should have kept calling them because they get busy and may not get a message. When the oncologist's assistant called my mom, she was distraught and crying because she had been reamed out for not getting back to a message regarding my dad's case and worsening condition. The oncologist's assistant then called my mom crying about how she had been called on the carpet for her inadequate response. My mom didn't need to deal with this assistant's nonperformance issues; the oncologist should have returned a call to my mom immediately. Since my dad was due to see the oncologist at the cancer center the next day, he waited for his appointment the next morning to see his oncologist.
The oncologist did not perform a chest x-ray to assess the state of the pneumonia in his lungs. Dad was having difficulty breathing and he had swelling in his ankles and feet. This oncologist advised keeping my dad on the Augmentin which was not working and also added Prednisone. This was a bad judgement call as my dad should have been admitted immediately to the hospital and his pneumonia type identified followed by serious intravenous antibiotics specific to his pneumonia. When my mom called the oncologist back on Friday to tell her dad was getting even worse, the oncologist advised remaining on the same dose of Augmentin and Prednisone. Well, by Monday my mom frantically called me asking what she should do. I advised her to get dad to the emergency room. Guess what? The doctor in the emergency room did a chest x-ray and CT scan and realized not only did my dad have a phenomenally difficult to treat pneumonia, but also respiratory failure as well as a pneumothorax or collapsed lung. The ER doctor immediately started dad on the precise forms of intravenous antibiotics he should have been on from the initial findings of pneumonia infection. The ER doctor also placed him on full oxygen and then my dad was transferred to another hospital because the type of doctors he would require for treatment did not have privileges at his hospital's cancer center. Dad was in the hospital for three weeks. During his second week while taking rehabilitation in the hospital, he fell while trying to walk with a nurse and my mom's assistance. Dad crashed and all hands came on deck to revive him. At this point, his heart was also giving him problems. I called the cancer center on numerous occasions to relay the inadequacies in my dad's care to the director of the cancer center. I even called to ask for assistance to obtain the help of dad's former, veteran oncologist. Do you know what the director of this cancer center said to me while I called him from a hospital lobby? He said, "You're dad will never walk out of that hospital like he walked in to the emergency room. It's over. His body is giving out. I realize you are trying to handle this from afar." At that point I informed him the only person handling this from afar was him as I was in the hospital with my dad. The cancer director then said to me, I don't mean to sound....." and he ceased speaking because he could not find a word to describe his behavior. Since I am an English teacher and this cancer center director couldn't find a word to explain his behavior I said, "Insensitive, Uncaring... and are you telling me that my dad is going to die? Because you've never seen or examined my dad." Would you like to know what his answer was folks? He said, "Well, I don't want to give you any false hope. And I don't have access to your dad's former oncologist even though he does now practice at the hospital where your dad is. There is nothing further I can do to help you." What a jerk. Would you want a man like this in charge of a cancer center? Not me.
My dad would die a week later. I eventually filed a complaint with the VP of this cancer center and it took repeated attempts to get his attention much less a call from him. He assured me he would have his medical director investigate my dad's case. Later, the cancer center VP called to tell me that another oncologist and general surgeon found no inadequacies in the way my dad's case was handled. I asked him what consequences he implemented for his cancer center director who was such an incompetent and insensitive jerk to me and my family. The response? "Well, he reports directly to me and I've had a chat with him about it." "A chat?" I asked incredulously. "I don't think I would want him managing my cancer center much less interacting with cancer patients or their families," I replied.
Later, I filed a report with The Joint Commission that oversees hospital certification and care. They wanted permission to give my complaint and evidence to the director and VP of the cancer center. I informed them that those folks already had that information. And to this day, both the novice oncologist, the cancer center director and cancer center VP are still in power and as far as I know, no one has ever been held accountable. So that is why my fellow North Carolinians, I sincerely believe you should think about where and from whom you receive cancer treatment. Because not all oncologists graduated at the top of their class and not all cancer centers are managed by folks who generally have a sincere interest about the quality of care a cancer patient or their family members receive.
Sincerely,
Grace
(Amy)
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