From Bedside to Patient to Caregiver: One Oncologist's Story of Each Side of the Cancer Journey
Kristie L. Kahl
Every person has a different perspective on a cancer journey, from those diagnosed with the disease, to their loved ones or the health care teams that treat them. One esteemed oncologist has seen cancer through a variety of lenses – from physician to patient to caregiver – over the last 40-plus years.
Nicholas J. Vogelzang, M.D., FASCO, FACP, a medical oncologist with Comprehensive Cancer Centers of Nevada, an affiliate of The US Oncology Network, began his journey in the medical field in the early 1970s, first working with the herpes virus as a cause for various cancers.
In 1983, Vogelzang received a stage 2A Hodgkin’s lymphoma diagnosis. He was treated with radiotherapy, which has unfortunately left him with a number late effects, but Vogelzang says they are manageable. And most recently in his experiences with cancer, Vogelzang served as a caregiver to his wife after she received a sarcoma diagnosis.
Vogelzang spoke with CURE about his experiences with cancer, and how patients and their physicians can have better dialogue to improve outcomes.
How did your experience play a role in your professional career?
Vogelzang: I think it’s given me the wish to be more involved in patient care…The story about “You can’t save the world, but you can save one person at a time,” is still my goal. I realize that I could probably do more benefit if I were developing a drug for a pharmaceutical company, or if I were running a cancer center and training young people, but I drive great joy and personal pleasure from helping individuals negotiate their way through this field of cancer.
Given your personal experience, do you have advice for your peers on how they could improve communication with patients?
I think the advice is to appreciate the overwhelming complexity that each person faces. These are folks who generally don’t have a medical background, and the amount of knowledge and information that a newly-diagnosed cancer patient has to – over a short period of time – master is enormous. And so, I usually use the rule of repeating everything three times.
On your first visit, don’t assume a patient will remember what you said on the first visit. Refresh their memory. Go over with their family member. Summarize their history from time to time. Walk them through the story of their cancer so that they remember where they have been.
I take a lot of pride in my notes, and my notes always have the complete history of their cancer – the treatments they’ve had, the duration of treatments, the outcomes of the treatment, and the sequence of the treatment – so that when I come to the next step, I can quickly look back and I can refresh the patient and their family’s memory and say, “Ok, this is where we were, this is where we are going to go, and let’s make certain that we have tried all available therapies and/or we have not run in to unusual side effects.”
So, it is laborious for the doctor and the family to go over that each time, but it is invaluable. They need to know that the physician remembers their story. It’s not just, “How are you? What side effects did you have last treatment? OK, let’s move on.” It’s a story that is constantly being written and the ending of that book – the patient’s story of their lives – is not over. It is always evolving. And that is a major issue. Doctors need to know how complex it is, and how confusing it is for patients.
Coming from the patient and caregiver side, what can they do to help understand a cancer diagnosis, treatment and side effects?
The major issue is that the patients need to do their homework. It’s like anything else in life. Do your homework, know your cancer. Don’t assume that your doctor has every fact at his or her fingertip. Keep a good summary of your story.
Many people move from one city to another, and they assume that the doctor who treated them in one city has transferred all of the records accurately. I find that to be not always true. It is very difficult to get all of the full records. And many times, I’ll put a note in my medical records “pathology report not available.” I try, but you cannot get the pathology report.
If the patients keep a binder of their cancer story, including those important things like the pathology report, the radiation records, surgery, the history of their chemotherapy – those are vital to their continuity of care. And that improves outcomes. Then the doctor can quickly learn that and doesn’t have to spend half an hour or more just digging through paper looking for important documents.
Given your experience with cancer from a variety of angles, what is your biggest takeaway from your experience?
The biggest takeaway is that it’s a life-changing disease. You can be cured of the disease, but it lives with you in the corner of your mind constantly. It’s not just the worry about relapse, but also the late side effects: What did that treatment do to me? Will the side effects resolve? How long will it take to resolve? What about the effects of the radiation or the surgery? What about the effects on my immune system?
It’s a life-changing and constant, evolving story that is important for the patient and all subsequent caregivers. It’s not sufficient to say, “history of prostate cancer” or “history of breast cancer.” What was the treatment? With radiation or chemotherapy? A lumpectomy? All these things, many times, the primary care doctor can’t follow, and doesn’t know. So, lifelong follow-up is probably the most important thing to remind everyone about.