My Incredible Cancer Story and Why Quick Access to Quality Care Matters
Two days after starting my new role with Summus on April 12 of this year, I had a routine wellness visit with my primary care doctor. Having not had my blood drawn for several years, my doctor ordered some routine tests. I walked over to the lab and was quickly seen by the phlebotomist. I headed home, sat down at my desk, logged on and started to dig back into my new hire documents with Summus. That afternoon, my doctor called to say that my blood work was unusual and asked if I could come back the next day to take more blood, have chest x-rays and run a few additional tests. A couple days later, the blood test came back with 3 times the normal white blood cell count.
At this point, I was concerned. I had information and data so I was aware something was really going on and it could be serious. I arrived at my appointment on April 19 and the doctor was very to the point. She went through my blood results with me and said, “I don’t know what is going on, but I believe you need to see a hematologist/oncologist. I am not saying you have cancer, but we want to rule it out.” The oncologist couldn’t get me in until May 5. Sixteen days with the knowledge I may have cancer. During those 16 days, I slept little, ate little, and woke up every morning concerned and fell asleep every night concerned. My wife and I started the “what if” conversations. I also had access to all my test results, so I googled every specific detail on 7 different blood tests. I’ll pause to tell you, don’t do this. This “research” only made things worse. I was convinced, based on what I saw, that I had blood cancer and, on average, had about 5 years to live. In those 16 days, I lost 10 pounds.
I walked through a set of doors that read “SSM Cancer Care and Cyberknife.” I was on the verge of a panic attack. I waited for less than 10 minutes when the oncologist walked in. He told me that he would need to do a few more tests but he had a strong hunch I have Chronic Lymphocytic Leukemia. CLL is a rare slowing growing leukemia that he explained is mostly treatable and will probably require no treatment at this time because I had no signs of illness so we will “watch and wait.” He ordered more blood tests including genetic testing of my blood cells to see if I have any “concerning” mutations. The results came back that night confirming that I have un-mutated CLL except for the one mutation that they want you to have so the targeted immunotherapies will be effective when, or if, the time comes to treat my cancer. My oncologist told me that we will do blood work every 6 months to make sure nothing changes. I have now surpassed the first 6-month window, and the results of my first follow up blood tests showed fewer cancer cells and all my positive numbers were up. This is typical and good.
Before I continue, I should say my oncologist is wonderful. He is compassionate, a great communicator and is very knowledgeable but is not a CLL specialist. He is a general hematologist, and the question in my mind was, “do I really have to watch and wait for this cancer to get bad before we treat it?” The prospect of living for years waiting for cancer to get bad enough to treat was daunting. I wondered if there were another path or a trial that I could access to knock it out now, so I didn’t have to continue to worry.
To bring the story full circle, the company I work for, Summus Global, is a virtual care company focused in specialty medicine. I contacted our CEO to tell him about my diagnosis and he immediately offered to connect me through our platform with a CLL specialist. I told him yes and tried to move on to a business discussion. He laughed and told me to stop. He said, “Max, you have had this significant diagnosis. Are you okay? Can we do anything else for you?” I kept trying to get him back to business, but he wouldn’t let me. He said, “Take care of yourself and we will deal with that later. “ I couldn’t have appreciated the approach more.
A teammate who is part of our Member Experience team at Summus sent me a unique link and I logged on to the platform, entered the necessary information to become a member and uploaded the blood tests used for the diagnosis. Inside of an hour, she reached out via email to offer open times to schedule an intake MD consult within a few days. My intake was done with a practicing internist and clinical professor of medicine at The Mount Sinai hospital. She spent 30 minutes with me understanding what I was trying to accomplish and assured me that Summus would match my case to a specialist who could locate trials and answer all my questions about CLL. From there, I received an email two days later with the specialist information who was the director of clinical research, division of lymphoma at the Dana Farber Cancer Institute in Boston and an assistant professor at Harvard Medical School researching new treatments for CLL. I was blown away. I met with him 1 week later. He spent 45 minutes answering my questions, assured me my oncologist had me on the right path, was able to point out some dos and don’ts, explained I had “the best-case scenario of biological markers” and said any treatment, even a trial, would be worse than Stage 0 CLL. He explained that the statistics show that on average, if treatment was ever needed, it wouldn’t be for 7 to 10 years. He told me, “Go live your life. This cancer isn’t going to kill you. In fact, the targeted treatment today has replaced chemotherapy, so when, or if, you need to be treated, it will maybe be a pill a day. In 10 years, who knows, with the advances on these new immunotherapy drugs we may be much closer to a cure for CLL.”
Being able to access one of the best doctors in the world on my specific disease mattered. I immediately stopped thinking about cancer every morning and every night. I was now down 20 pounds and have been able to keep the weight off in a healthy way. My wife and kids stopped worrying, and most importantly I stopped googling CLL. Having access to this specialist gave my family and me peace of mind, saved me from spending more money on additional doctors, and inspired me to become the evangelist for Summus I am today. Most importantly, I am confident that I am on the best possible path to an outstanding healthcare outcome for this diagnosis.