Virtual Care and Self-Advocacy
- A 60-year-old English grandmother was finally diagnosed with non-Hodgkin lymphoma after she’d been perpetually denied an in-person visit to properly address her health concerns.
- Lymphoma is a type of blood cancer. Early symptoms of the disease can be tricky to notice as they may include swollen lymph nodes, fatigue or unexplained weight loss.
- The COVID-19 pandemic has led to a surge in use of telehealth appointments. And while there are good reasons for virtual visits, it’s important to remember that not all concerns can be properly addressed without an in-person visit. Being your own advocate can be key getting a correct diagnosis and obtaining the best treatment possible.
Unfortunately for Julie Forward, a cancer diagnosis arrived after she’d been perpetually denied an in-person visit to properly address her concerns.Read More
“That lack of contact means they just can’t get an accurate picture of what is happening,” she said. “You can talk as long as you like on the phone but if a doctor can’t look at you and see the pain you’re in and how you’re growing weaker – as I did – they can’t make those decisions that can save a life.”
Forward eventually had a bowel rupture after a cancerous mass continually pressed on it. What followed was an 11-week fight for her life in the hospital where she was finally given a correct diagnosis and treatment: non-Hodgkin lymphoma and chemotherapy.
“For weeks it was allowed to grow and spread until I suffered a ruptured bowel and was in a critical situation that meant I very nearly didn’t make it through the night,” she said. “I’m getting stronger, and I’m determined that I’ll still be here for my husband, my daughters and my grandchildren. But it’s all been so unnecessary because it should have been picked up when I first asked to see a doctor last August.”
Lymphoma is a cancer of the immune system that begins in the white blood cells called lymphocytes. According to the Leukemia & Lymphoma Society, about 90,390 people in the United States are expected to be diagnosed with lymphoma in 2021 – 8,830 cases of Hodgkin lymphoma and 81,560 cases of Non-Hodgkin lymphoma.
You might be at a higher risk for lymphoma if you:
- Have been infected with the HIV or Epstein-Barr virus
- Had an organ transplant
- Have a family history of lymphoma
- Have been treated with radiation or chemotherapy drugs for cancer in the past
- Have an autoimmune disease
There are more than 40 different types of the disease. Hodgkin lymphoma and non-Hodgkin lymphoma are the main two sub-categories with the latter being more common. The type of white blood cells linked to the disease determines the distinction. If doctors are unable to detect the Reed-Sternberg cell – a giant cell derived from B lymphocytes – then it is categorized as Non-Hodgkin lymphoma.
People with lymphoma do not always have symptoms, but common ones are:
- Swollen glands in your neck, armpit or groin
- Night sweats
- Unexplained weight loss
- Feeling tired
- Swelling in your stomach
Pushing for a Better Virtual Care Experience
Virtual care has become more prevalent since many people are, rightly so, concerned about potential exposure to COVID-19. That being said, it’s important to remember that virtual care may work great in some cases, and it may not in others. If you’re worried about an issue you’re having and you feel like your concerns would be better addressed in person, ask for that appointment. And, at the very least, make an effort to express your level of concern to your doctors if it is a virtual visit.
Telemedicine has become a big thing since the start of the pandemic, but some patients and providers have been using telemedicine regularly prior to 2020. Dr. Zachary Reese, a medical oncologist at Intermountain Healthcare, previously spoke with SurivorNet about the pros and cons of virtual cancer care.
“Telemedicine, believe it or not, works really well for cancer therapy,” Dr. Reese said. “And at Intermountain, we’ve been doing telemedicine for cancer patients since 2015.”
Dr. Reese did admit, however, that it is not a fool-proof system when it comes to checking in on the progress of treatment.
“Now, that’s not to say that it’s perfect because there are some limitations, specifically with regards to the physical exam,” he explained. “I can’t feel your abdomen to tell you is it more bloated, is it less bloated, or more distended or less distended than it was before. I can’t feel a lymph node in the neck and see is that getting bigger or not. But fortunately, we can further evaluate that by, again, using CAT scans to get something that’s more objective in that case.”
Dr. Abraham Chachoua, a medical oncologist specializing in lung cancer at NYU Langone Health’s Perlmutter Cancer Center, previously shared his thoughts on telehealth visits amid the pandemic. He, too, saw its benefits and issues.
Dr. Chachoua says that while telehealth can make getting second opinions on a diagnosis easier, it also has significant drawbacks. In order to detect diseases such as lung or breast cancer, oncologists must physically examine the patient by listening to their lungs or feeling over their breasts for lumps.
“One of the things that bothered me during this time is that you can do some things with teleheath, but you can’t do everything,” Dr. Chachoua said. “I think we’ll find that there’s no real substitute for the physical exam. So some people will need to come in and be examined and evaluated.”
But efforts have been made to provide virtual care that addresses people’s concerns while utilizing the socially distant benefits of telemedicine. Virtual clinics such as NYU Langone Health’s Perlmutter Cancer Center’s new Suspicion of Cancer Virtual Clinic have been created to encourage more people to talk about their potential cancer symptoms in an easy access way. In these clinics, patients can explain their symptoms with nurse practitioners over a video call and may be referred to other doctors for further discussion.
“Don’t ignore symptoms that would be significant, just call us,” Dr. Chachoua said.
Advocating for Your Health
Whether you are currently battling cancer or worried that you might have it, it’s always important to advocate for your health. And if virtual care is involved, it’s crucial that you clearly communicate your concerns and stick to your guns if something feels wrong.
“Every appointment you leave as a patient, there should be a plan for what the doc is going to do for you, and if that doesn’t work, what the next plan is,” Dr. Zuri Murrell, director of the Cedars-Sinai Colorectal Cancer Center, told SurvivorNet in a previous interview. “And I think that that’s totally fair. And me as a health professional – that’s what I do for all of my patients.”
In a previous interview with SurvivorNet, April Knowles explained how she became a breast cancer advocate after her doctor dismissed the lump in her breast as a side effect of her menstrual period. Unfortunately, that dismissal was a mistake. Knowles was diagnosed with metastatic breast cancer at age 39. She said the experience taught her the importance of listening to her body and speaking up when something doesn’t feel right.
“I wanted my doctor to like me,” she said. “I think women, especially young women, are really used to being dismissed by their doctors.”
Figuring out whether or not you actually have cancer based on possible symptoms is critical because early detection may help with treatment and outcomes. Seeking multiple opinions is one way to ensure you’re getting the care and attention you need.
Another thing to remember is that not all doctors are in agreement. Recommendations for further testing or treatment options can vary, and sometimes it’s essential to talk with multiple medical professionals.
Contributing: Shelby Black, Anne McCarthy