Becoming the doctor the patient in me wished for: my cancer journey

Raafia Siddiqui is second year medical student at McMaster University.

 

The surgeon asked me for the second time, “So are you here alone?” “Yes”, I answered, this time a bit impatiently. I was a 20-year-old with other things than this appointment but my family doctor had noticed a lump on my throat and insisted I see a specialist. We were supposed to discuss the results of the biopsy today.

After my response, the surgeon placed his hand on my shoulder and let out a long sigh. I asked him, “What is it?” His reply was very short and urgent, “There’s a lump - and we have to take it out”.

Immediately, I understood what he meant and began pressing him with questions, “Is it malignant? Has it metastasized? What type of cancer is it?” Although I felt I had to pry answers out of him, the specialist finally told me I had a thyroid tumour, which he believed had begun to spread.

I remember walking out of that appointment very confused, with the most daunting question still on my mind, “How do I explain any of this to my parents?” To my parents, pictures of good health with no history within the family, cancer was a foreign, terrifying disease. They were unable to digest my reassurances that thyroid cancer was relatively “safe” compared to other types and were astounded that their young daughter was suffering from what they held to be a non-treatable and deadly.

I sought out the support of my family doctor, with the hopes that she’d know how to calm their worries. “Don’t worry, if you have cancer, you want this kind! She’ll be fine! Thyroid tumours are very easy to treat!” she said. I didn’t understand why someone would tell a patient they’re disease is something to be happy about, but I thought, maybe that was her way of putting my parents at ease. Things went downhill when my mother asked if she could get a second opinion, greatly upsetting my doctor. When my father asked if there were any options other than surgery or radiation, she said he’d have to find out himself. When I mentioned I had heard some alternative therapies may be helpful, she scoffed at me and said I could try “magical lotions and potions” if I wanted to but she was certain they’d have no effect. My family doctor clearly did not like that we were questioning what she thought was best. What she didn’t realize was that we were simply worried and would have benefitted from professional reassurance.

A few months later I had my thyroid gland surgically removed. I also had one round of radioactive iodine therapy, in which I was kept isolated in a radio-proof room for a couple of nights. Throughout this time, I remember feeling a total loss of control over my health. I had to put on a tough face for my family so they wouldn’t worry. Who could I speak to? Who could they?

Inevitably, I turned to online blogs filled with misinformation and horror stories regarding surgery and radiation. I remember going into radiation treatment thinking I would die of low sodium because I had read it on an online blog.

After treatment, I was put on thyroid replacement therapy for life. My endocrinologist retired a year later without referring me elsewhere but I didn’t think much of it as by that point my faith in our health care system had waned. That was when my health really plummeted. At one point I was twenty pounds thinner and my hands would shake, my heart would start racing and I would have nightly panic attacks. I remember feeling as if I was going insane, yet wasn’t sure how to get help. It wasn’t until a walk-in doctor suggested I have my thyroid hormone checked did I realize that I my issues had to do with my medication dosage. Other problems I developed included changes to my blood sugar levels, my reproductive hormones and my stress hormone levels. Motivated to improve my health, I sought out a new endocrinologist who worked with me to find an appropriate dosage. With his support, my condition improved over several months.

My experiences as a cancer patient left me feeling bitter, angry, and powerless. I think many of these feelings stemmed from poor communication with my health providers and the limited support I received. Five years later, I am now training to be a doctor myself. I ask myself often, will I be a doctor like the ones who treated me or the patient in me would want to see?

If I had to go back and do things differently, I’d speak up and demand that my concerns be heard. I’d better advocate for myself, since now I know that asking for a second or third opinion is my right as a patient. I would seek out reliable resources in the community that could help me with the treatment and transition process. As a care provider in training, I know that I can be an advocate for my patients by giving them the agency they deserve. I can and should treat patients as an expert on their own body and as a co-creator of health care knowledge.  I will be careful not to be dismissive of their concerns, or insensitive towards their condition and the impact it has on them. I will be the doctor the patient in me wishes she had seen.

 

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