Long-Term Survivorship for the Record
Maine Cancer Foundation Board Member Laura Davis Rinck spends her day job as President of Rinck Advertising. In addition to serving on the Foundation’s Board of Directors, Laura has been a voice for those affected by cancer and has shown how to live with hope and success. She won the 2011 Amgen Breakaway from Cancer Survivor award for her involvement in community outreach and for demonstrating a passion for helping others with cancer. The national award is given to a cancer survivor who is involved in community outreach and demonstrates a passion for helping others with cancer.
The month of July is dedicated to cancer survivorship. In our guest blog series, Laura, who was first diagnosed with Hodgkins Lymphoma in 1989, shares unique and impactful perspectives on 28 years of survivorship. Most recently, her journey included over six months of trying to gain access to medical records she was told had been destroyed.
According the National Cancer Institute’s Office of Cancer Survivorship, there are approximately 15.5 million survivors in the United States. Just 17% or 2.6 million have survived over twenty years. And the number drops to about 6% or 960,000 survivors who have lived for thirty years.
I am a twenty-eight year survivor.
The data from NCI supports my own internal clock which, lately, has felt like a bit of ticking time bomb. I suspect that ticking is probably heard by most people who are fifty-something but I only hear it as a survivor. In fact, I have now lived longer as a survivor than not. The advantage of long-term survivorship is a kind of health vigilance that you gain when you’ve been introduced to your own mortality in your early 20’s. Sometimes that clock ticks louder than other times.
A cancer survivor is anyone diagnosed with any type of cancer from the time of their first diagnosis through the balance of the rest of their life, whether that is a few precious months or several decades. My survivorship journey has been defined as living cancer-free for most of that 28-year period, with intermittent secondary cancers including thyroid cancer and multiple basal cell carcinomas. I’ve also had health issues related to radiation scars like pulmonary fibrosis, colon strictures and angiomyolipomas which are benign tumors of the kidneys. There have been plenty of suppressed immune issues over the years including pneumonia and a case of meningitis.
My story is quite typical of a long-term Hodgkin lymphoma survivor. Many of my long-term effects have been the result of receiving a lifetime quota of 4800 rads of radiation treatment. While I have had my ups and downs, in 2011, I took a much more active role in the management of my survivorship when I stumbled upon a medical article that had been published in the American Journal of Medicine entitled, “Care of the Adult Hodgkin Lymphoma Survivor”. I distinctly remember feeling alarmed after reading the abstract: “Hodgkin lymphoma survivors are at risk of developing secondary malignancies, cardiovascular disease, pulmonary disease, thyroid disease, infertility, premature menopause, chronic fatigue, and psychosocial issues. These conditions usually have a long latency and therefore present years or decades after Hodgkin lymphoma treatment, when the patient’s care is being managed by a primary care provider.” (Read the article in full).
Let me pause here to negate the common advice to never Google your medical condition. You must Google it. You absolutely must become a medical student of your own body and your diagnosis. But you must be responsible and knowledgeable about your sources as well as careful where you place your trust.
For me, finding that article in 2011 was extremely important to my survivorship journey. At the time, I printed out several copies and hand delivered them to both my PCP and my oncologist. I asked these trusted partners to read the article carefully and work with me to avoid the avoidable and predict the predictable. I reminded them both that my life goal was to live to be 100 and I needed their help. My physicians have been great partners and have helped me manage my health and survivorship although I have been, at times, in the driver’s seat. It has mostly worked well but I have recently posed hard questions for all of us that have gone unanswered or “under answered”. Not because of negligence but just because of lack of available information or resources.
So, in this the 28th year of my survivorship, I have made a resolution and an epic life goal to become even more vigilant and as healthy as possible. It is necessary if I am going to live to be 100 but I also made a shorter term bucket list goal to celebrate my 30th “pearl” anniversary in Japan with my husband. Trip planning aside, the last year I have had some troublesome symptoms that I felt needed a closer look. That lead me to yet another Google search where, much to my surprise, I found the Dana-Farber Cancer Institute Adult Survivorship Program which is designed to help patients manage the long-term and late effects of cancer and its treatment. The thing that fascinated about this program is the emergent nature of the practice as well as its clinicians. Cardio-oncologists, onco-endrocronoligists and onco-nephrologists are all part of this innovative program. In fact, the director explains the program as a whole new field of medicine. In all my 28-years of survivorship, I have never even heard of these kinds of doctors and that is because they have not, until recently, existed. From the patient perspective, it makes perfect sense to me.
On January 4th I started the process of becoming a patient of the Adult Survivorship Program. I was relieved to hear that it was not necessary that I had been treated at Dana-Farber nor would I need a referral. I simply needed to send my medical records which they would review in order to set up my in-take appointment. Unfortunately, it was not as easy as it sounded.
For the next six months, I would search for my records. Two separate in-person trips to the office of medical records, multiple calls and emails and a very tense call to Iron Mountain, the off-site data management corporation, were all to no avail. My records of pathology, treatment, surgery, follow-ups, mammograms were nowhere to be found. Moreover, both my original oncologists had retired. I could not accept this status on my medical records. How could my physicians be caring for me if they did not have my records?
On my last call in early spring, I would be told that that due to hospital policy my records had been, in fact, destroyed. The policy and procedure, as stated to me on that call, was to destroy records after twenty years. For someone who had never missed an annual check-up or a mammogram, this news absolutely devastated me. I felt violated as if I was the victim of medical identity theft. It also felt like the hospital had placed a bet against my long term survivorship. And that made me really angry.
What this would ultimately mean is that Dana-Farber could not accept me as their patient. I had nothing for proof but radiation tattoos, seventeen surgical scars and my mother’s diary from 1989 which she lovingly transcribed for me but which Dana-Farber could not accept as my record – and yes, I did offer it to them in a last-ditch effort.
After I recovered from the shock of losing my medical records, I went back to Google to search for the Maine State Law of Medical Records Collection, Retention and Access, Title 22, 1711. What I learned was not comforting. Maine law requires hospitals to keep patient records for a period of seven years (or if the patient is a minor, six years after they become 18 years old). However, as I continued to research, I found what I thought could be a loop-hole and that is, Maine law requires the hospital to give the patient prior notice either directly or through a newspaper with broad distribution.
I called one final time to the office of medical records to request documentation of my legal notification. I explained that I understood the Maine law and simply requested proof of that notification. Within one hour, I received a call back. They had found my records. I have no reasonable explanation for this but I do know that if I had not been tenacious and demanding, those records would be lost forever.
The fact that I have my records and my appointment at Dana-Farber is a huge relief. But it is not enough. As a long-term survivor, I am compelled to do two things: to educate every cancer patient about the importance of medical records retrieval and to change the Maine law.
I took two steps today. I wrote this blog and I met with my legislator.
Please note: Thoughts and opinions expressed in Maine Cancer Foundation's guest blog series are the views of the writers.