A few months ago, I underwent a month long daily radiation therapy for breast cancer. It was hard for my frail rail thin body. The treatment left me physically, emotionally, and mentally depleted — like nothing I had experienced before. Several months after completion, I still suffer the side effects. (I know survivors who remain affected many years down the road). I feel lucky to be alive. A large part of me is filled with deep gratitude for the advances in cancer medicine –– and for my oncology team. Another part of me, the human-centered strategy consultant, is bewildered by the gap in understanding of human needs in the radiation therapy process.

From the very first day I stepped into the radiation waiting room, and treatment room, I witnessed the void. Efficiency versus humanity. It chilled my spine. Lots of efforts had been placed into maximizing output. Less so on ensuring a conducive experience for cancer patients. Why does it have to be so dualistic? Efficiency married with humanity would produce better outcomes for both cancer patients and radiation oncology employees. (The strain is visible on both sides). On the first day of treatment, a stressed radiation therapist greeted me with: “Next time I won’t come get you. You’ll go straight to the dressing room, put on a gown, and wait in the waiting area I’ll show you.” That’s all he said. Then left me to figure out the rest. I was stunned by the coldness of this first reception. I felt a pang rise in my chest. The waiting area was dismal. The temperature freezing. The lighting chilling. Haggard cancer patients, exposed and vulnerable, were waiting motionless in oversized gowns. Fatigued fishes in a decrepit aquarium completed the decor.

Although radiation therapy saves lives on a massive scale, the treatment process has much room for improvement. By process, I mean the way radiation therapy is administered from first consultation to final treatment. Existing processes add excessive stressors on already stressed cancer patients. Many of which could be preempted with a compassionate human-centered approach. While largely overlooked these stressors are fundamental to understand because they represent primal barriers to human wellbeing and healing. They can also have repercussions on medical performance. As an example, a patient who is distraught by the process will take longer to position on the radiation machine than one who is at ease. This in turn can increase stress on medical staff, and lower productivity.

In all truthfulness there are growing efforts to improve the patient experience in Healthcare organizations. Some hospitals (like the one I received treatment at) have a whole department dedicated to the patient experience. While a positive endeavor, in my experience these efforts only scratch the surface of human needs. They address the low hanging fruits, and fail to go deep enough to understand the root causes of patient distress.

During my month long radiation treatment, I experienced these stressors first-hand. It took concentrated efforts to acclimate to the process and be able to somatically experience treatment as treatment — and not torture or threat. It didn’t help that the radiation suite looked like a torture museum I had visited long ago. The neat rows of radiation moulds and masks (openly displayed for faster access) also added a sense of dread. Intellectually my mind was aware that I was receiving treatment, but at a primal level my somatic bodily response didn’t reflect my intellectual knowing. As a mindfulness practitioner I stayed attuned to my body during treatment. My body felt hijacked. The alignment process (the procedure used to position patients for the radiation beams) and breathing instructions made my body tense up. Thoughts of feeling dehumanized popped in my mind on multiple occasions. I had to make special requests to make the process more conducive. The technicians graciously responded, and it reduced the strain for all of us.

My first-hand experience of cancer treatment magnified the gap in understanding of patient needs. I wish hospitals would place more efforts into understanding the holistic human experience of cancer patients. Advanced technology and first-rate oncologists are terrific. But pairing them with processes that don’t acknowledge the full humanity of patients adds unnecessary stress on already stressed cancer patients. As a survivor, I feel extremely grateful to be alive. As a human-centered design consultant, I am acutely aware that the radiation experience could be positively transformed with a holistic human-centered approach. Witnessing the gap with technology companies (in my field), I developed a model that teaches “augmented perception” techniques to help practitioners explore the customer experience from the inside out, and discover stressors they had not previously realized. Such insights could lead to transformative improvements of the patient experience in healthcare settings.

Thank you for sharing this post with others!

14 thoughts on “An Insider View of Cancer Radiation Through the Eyes of a Cancer Patient

  1. I think your comments are very relevant and I too felt that the human touch would have gone a long way in my early treatment. I was scared and my body hurt with every move I made. I learned to request what I needed instead of expecting it. I foolishly assumed the technicians understood your condition and would show some compassion but that was not the case, I was just the next MRI or CAT scan or X-ray. Showing compassion was all I needed.

    1. Thank you Loretta for your heartfelt comment. That was my experience as well. I learned to voice my needs (I even requested a different technician) and it made things easier. That said, I don’t think it’s all the fault of the technicians. Being a radiation oncology therapist is a stressful job. I think the radiation process needs to be re-imagined from a holistic human-centered view, to benefit both patients and therapists. Empathetic therapists are helpful, but they can’t make up for the process flaws.

  2. Hi Silvie, thank you for your reflection of your experience. I get the sensation of nails on the chalkboard (almost) as I feel your vulnerability going through the process. For a solution, my mind think of my dentist in a small town of Woodland where I was growing up. The office was small, warm, charming and the staff were so friendly. That made the scary trip of going to a dentist a less scary and even a pleasant experience.
    Small and personal is the way to go.
    I think of Radiation Therapy is a knifeless surgery. It’s great that the doctor does not have to open you up to get to the tumor. But the radiation that goes in, the tissues that get damaged, the repairing and regrowth that take place, etc… all of that is as burdensome to the body as a surgery. Then you have to do that many times.
    So it is important to make the place as nice as a good dental office, or like a kindergarten class, where it can be scary to go to, but can be comforting once you get there and be willing to return again.
    It takes a re-visualizing of the patient’s needs. Not much to ask and doable for healthcare organizations. Your point is well understood!
    All the best to you.

    1. Thank you Brandon for your thoughtful comment. Although radiation is a lot worse than going to the dentist, your parallel with the dentist offers a useful analogy everyone can relate to. A comforting environment would go a long way. Although there are more than visual stressors that need addressing. In my mind, developing a holistic view of the patient experience is imperative to positively improve the radiation experience. And visualizing the patient experience from the inside out –– as you hinted to. I believe this requires new tools and skills. This is what prompted me to develop a new model to help companies see the patient experience through expanded eyes.
      On the personal side, my experience of radiation was that it was a lot harder than surgery. I had multiple cancer surgeries this year and recovered in a couple weeks. Several months after radiation treatment, I was still huffing and puffing. I think the repetitiveness of treatment (which you pointed to) is what makes it harder. I felt knocked down every day, and had to get back on my feet to get knocked down again the next day, and the next day, and the next day…

  3. I have worked as a part-time hospital chaplain volunteer for a few years. I completely echo what Sylvie described based on my interactions with cancer patients. An experience that is much more holistically human is needed in many of our today’s healthcare centers, for the benefit of both patients and care providers. Thank you for articulating this need so well, Sylvie.

  4. The radiation treatment experience should be more akin to what dentists practices finally begin to understand: a transformation from dread to spa: during the “old days” at a dentist, the tray with tools would sit in front of you; now good dentists know how to hide and make the entire “flow” of treatment an art: a modern dentist who masters the “art” now knows how to “hide” these tools and make the dental appointment more a “spa-like” experience: sadly for the bigger more important treatments, it is still a long way: I am so sorry that you went through such a disheartening experience. Hopefully there will be a more holistic approach to all of this. Well observed Sylvie!

  5. I also found Sylvie’s post very impactful and spot on. I’m a breast cancer survivor who had a similar experience some years ago at the same hospital. I recently went back for a scan, and really resonated with Sylvie’s description. Thank you for your fantastic image. It is perfection… embodied truth.

    It is really brave and important that you write this blog. It is needed. It gives me hope. Thank you.

  6. This is a powerful piece. I’m glad you found the energy to express your experience so clearly. It’s an important message to bring to those who are trying to achieve the best outcomes for cancer patients.

  7. Wow! Your extremely sensitive and keen observations brings all of us in tune with the coldness and callousness of these treatment centers. How fortunate we are that you are shedding light on this, Sylvie, for we need to bring this to the surface in society and show that patients need a ton more compassionate “human” care and obviously need training in developing it. Thank you for a magnificent and important article.

  8. The clarity and vulnerability that you bring to this piece Sylvie really help me visualize your experience. It’s often easy to think you know someone’s experience or put yourself in their shoes per say, however, that’s really never possible. The only way to get close is to have people eloquently write about their perspective as you have done or to have the insight and courage to ask a person what they are experiencing and then have the willingness to truly listen to their answer. Even if the healthcare team was each required to go through the radiation process in a high definition simulation process they would still fail to perceive the fatigue and many levels of trauma that you as a patient bring with you each time you receive a treatment. This is part of why healthcare workers who have been patients themselves often are able to bring humanity to the process that may otherwise be overlooked. What’s so unfortunate is that empathy, kindness, and compassion are good for everyone. Your courage and writing Sylvie continue to inspire me and I hope your words are reaching the ears of a healthcare system that needs to hear them.

    1. Thank you so much Jody for your comment, and perceptive insights. I reflected on your words, and they gave me an expanded understanding of the potential of my writing. Your words helped me see my writing through an angle I hadn’t thought of before. Thank you for the inspiration.

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