Cancer Patients: Tackling the Privacy Dilemma

As a patient I know that there are laws in place to protect my medical records and the confidential nature of my consultations with my doctor. However, there is much less to protect my privacy in other situations. For example, if information I may not want to become public knowledge comes to be revealed through other individuals who are not part of my medical team. When undergoing cancer treatment, it’s usually necessary for us to share sensitive or highly personal medical information with members of our family, we also may need to share news with our social network or work colleagues. 

I realize now, nine years after my cancer diagnosis, that it was truly up to me what I wanted to say about my medical condition and what I wanted other people to know. There have certainly been times when I should have been more careful with what I revealed or chosen more carefully who I confided in. Much to my chagrin, one matter of etiquette that was breached during my diagnosis and treatment was respect for my privacy as a cancer patient. Of course, I won’t name people specifically, but there were a couple of family acquaintances who took it upon themselves to spread the news of my illness. Please don’t share cancer information unless you know you have permission from the individual. Don’t use telephone calls, emails, social media, newsletters or bulletins to comment about a person without their specific consent. This rule is especially important when it comes to something as intensely personal as one’s health or a cancer diagnosis.

Regrettably, I’ve learned that our society still has misperceptions about chronic illnesses, such as cancer, and that there is still indignity for those of us living with such conditions. This legacy isn’t surprising considering the profound fear, confusion and stigma surrounding cancer for centuries. Until relatively recently the word was hardly spoken in public or said out loud. In 1978 Susan Sontag wrote the classic, and still controversial work, Illness as Metaphor. A breast cancer patient herself when she was authoring the book, Sontag argues that the metaphors and myths surrounding certain illnesses add greatly to the suffering of patients and frequently inhibit them from seeking proper treatment. By demystifying the fantasies surrounding cancer, Sontag strives to show cancer for what it is—just a disease. Cancer, she argues, is not a curse, not a punishment, certainly not an embarrassment, and it is often highly curable if appropriate treatment is followed.

It’s no wonder that some cancer patients still choose to avoid revealing their illness to others. Some don’t want to be viewed differently. They just want to be normal, not defined by the disease. Others may choose to stay silent to protect their privacy and emotional stability. When the news broke that musical legend David Bowie had died at the age of 69 after an 18-month battle with cancer, fans around the world expressed not just grief but shock. Despite decades on the world stage, under the glare of a public spotlight, the rock-and-roll icon managed to keep his cancer journey a secret from fans and friends alike, sharing his medical condition only with a handful of people in his inner circle.

It’s one thing to grieve a long life lived and a promise fulfilled. It is quite another to be shaken by a life cut short. Just recently many of us were shocked once again by the news that the actor Chadwick Boseman had died at the age of 43 from colon cancer. Boseman was diagnosed with stage III colon cancer in 2016, and battled with it these last 4 years as it progressed to stage IV. He never spoke publicly about his cancer diagnosis, and according to The Hollywood Reporter, “Only a handful of non-family members knew that Boseman was sick… with varying degrees of knowledge about the severity of his condition.” During treatment, involving multiple surgeries and chemotherapy, he continued to work and completed production for several films, Boseman died at his home as a result of complications related to colon cancer on August 28, 2020, with his wife and family by his side.

Getting Organized: Learning to Manage Your Cancer Journey

 

IMG_0117When my gynecologist informed me that I had cancer almost three and half years ago the last thing on my mind was trying to manage the absolute chaos that my life had suddenly become. First, I was numb and in shock to learn that I had gynecological cancer at a fairly advanced stage. Once the dust had settled I found myself experiencing intense anger and fear, I was actually astonished to learn that emotions so strong existed. My life seemed to be spinning violently out of control and there appeared to be little I could do to stop this process or to regain a sense of stability. It was tempting to sit back and let things happen to me, and to believe that events were completely beyond my influence.

Despite my anxiety, I immediately realized that successful cancer treatment would require me to be an active participant, I would need to schedule and attend literally dozens of medical appointments. At the same time I would have to deal with the bureaucracy of the health-care system on an almost daily basis. Of course, I knew I could depend on family members to assist me when I was hospitalized or completely exhausted. But by and large I established that it was my cancer, my body and my complex journey to navigate.

Following my diagnosis I was often overwhelmed with the countless tasks that I was required to perform and with the hurried pace at which things were happening, but I’ve gradually devised my own system that enables me to be more organized. Over time I’ve learned to confront the practical life changes associated with cancer treatment, I’m now able to approach them with more efficiency and less hassle.

Keeping a Record of Your Treatment on Paper

 

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I strongly recommend keeping a personal record of your cancer treatment, including surgeries that are performed and any chemotherapy or radiotherapy that is administered. I have chosen to use a binder and I suggest the following other essential stationery supplies:

1. Page protectors (single page and multipage)
2. A hole punch
3. A stapler

I’ve used a combination of chronological order and straightforward categories to organize my documents. In case you’re wondering what needs to be in your cancer treatment diary, here is some of the key information that I’ve chosen to include in mine:

  • Basic documentation concerning my hospitalizations and surgeries
  • Complete pathology reports
  • A timetable of appointments, the specific drugs that I was given and other essential details regarding my chemotherapy
  • Physician progress notes summarizing my appointments at the Tom Baker Cancer Centre outpatient clinic

Using a Computer to Bring Your Journey Together

 

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Now that personal computers are firmly ingrained in our culture and nearly everyone is computer literate you’ll want to take advantage of this technology to make your cancer journey easier and more organized. As with traditional filing, you’ll require an organized system for letters, personal notes, essays and other word processing files. It’s best to create a classification system that makes sense to you and that allows you to locate files and documents quickly on your computer. Of course the Internet is invaluable for cancer patients wishing to learn more about their disease, but it’s essential to ascertain the difference between reliable or accredited sites and those that contain inaccurate, and sometimes even dangerous, information.

Some cancer patients have the advantage of accessing their official medical records online. Those of us being treated for cancer in Alberta unfortunately do not have access to these types of databases; my hope is that we might in the near future. I was excited to learn that there are plans to start an online portal this year that will give Albertan’s access to their prescriptions. Meanwhile, the intention is to add other medical information to the online system over time. In the interim I have to be content with requesting information from my medical records directly from the Tom Baker Centre and making sure each request is in writing. This can be a time consuming and tedious process, but it’s my judgment that the aggravation is worth it.

Ultimately the completeness or comprehensiveness of your medical information and the ease with which you can obtain medical records will vary depending on where in Canada you are receiving treatment. There is little doubt that receiving your cancer treatment in the United States or in a private health-care system may offer some advantages in terms of obtaining complete documentation. There is considerable bureaucracy and more overall effort involved by patients in the public system that I am a part of in Calgary, Alberta. We have to advocate a great deal for ourselves in terms of getting the information we need, and such pursuits can be difficult for a cancer patient when they are receiving chemotherapy or other active treatment. Personally I admit my medical appointments and diagnostic tests have slowed down substantially now that I’m in remission.