Caution Before Clicking About Cancer

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In spending so many hours online, I came to see that much of what I was reading was opinions and, in fact, not facts at all.

I hear people say frequently, "I read somewhere…" That, to me, is the problem. No matter what you are seeking, the internet has a vast amount of knowledge that you can browse. While some sites are monitored and fact-checked for content, many other sites about medicine and treatment options aren't. They are self-posted advice blogs, privy for any eyes that happen upon them.

It doesn't matter where you stand on an issue or belief, you can find something online that aligns with your own feelings. When my sister was battling cancer, I become a researcher. I sought answers to the many things that I did not yet understand about cancer. But in spending so many hours online, I came to see that much of what I was reading was opinions and, in fact, not facts at all.

I researched most when my sister was sickest. When her team would give us bad news or when we were told that the end was possibly near, I felt that I couldn't sit idly by and do nothing. I turned to the internet to connect with others and sometimes, to get second opinions when I didn't want to believe the diagnosis that she was facing.

Having worked with many cancer charities, it was hardest to see people falsify a story to garner money or attention. When one faces cancer, or loses a loved one to the disease, they often seek a way to do good in their memory. Abusing the generosity of somebody who may have lost a loved one is unconscionable to me.

It is often said that what is read online cannot always be trusted; but when one is in a vulnerable place in their lives, they are reaching for a solution, and a miracle of sorts that does not always come when one has cancer. This article is not to suggest that people don't research when cancer comes into your life or that they do not seek alternatives to medications for simple complications such as nausea. But before stopping treatment that is prescribed by an oncologist, it is important to have a discussion with the care team.

Yes, it can be intimidating, but it is necessary. When I found ideas online, I had close friends and nurses to discuss them with, as well as a team of world-class doctors that I could bring treatment suggestions to and know that they would consider them all.

But having a rapport with the care team be challenging. You do not have to get along with them all — god knows I didn't. Regardless, an open dialogue is important so that you can discuss any and all options that they, and you, the patient or caregiver, may want to pursue during the cancer journey.

I think we inherently are a species of wonder. Living in a technological age means that when we wonder, and a potential solution to our curiosity is just a few clicks away. While it can be a great place to gain knowledge and understanding — especially when it comes to cancer – I would just encourage that we all utilize caution before clicking.

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For patients with cancer, the ongoing chemotherapy shortage may cause some anxiety as they wonder how they will receive their drugs. However, measuring drugs “down to the minutiae of the milligrams” helped patients receive the drugs they needed, said Alison Tray. Tray is an advanced oncology certified nurse practitioner and current vice president of ambulatory operations at Rutgers Cancer Institute in New Jersey.  If patients are concerned about getting their cancer drugs, Tray noted that having “an open conversation” between patients and providers is key.  “As a provider and a nurse myself, having that conversation, that reassurance and sharing the information is a two-way conversation,” she said. “So just knowing that we're taking care of you, we're going to make sure that you receive the care that you need is the key takeaway.” In June 2023, many patients were unable to receive certain chemotherapy drugs, such as carboplatin and cisplatin because of an ongoing shortage. By October 2023, experts saw an improvement, although the “ongoing crisis” remained.  READ MORE: Patients With Lung Cancer Face Unmet Needs During Drug Shortages “We’re really proud of the work that we could do and achieve that through a critical drug shortage,” Tray said. “None of our patients missed a dose of chemotherapy and we were able to provide that for them.” Tray sat down with CURE® during the 49th Annual Oncology Nursing Society Annual Congress to discuss the ongoing chemo shortage and how patients and care teams approached these challenges. Transcript: Particularly at Hartford HealthCare, when we established this infrastructure, our goal was to make sure that every patient would get the treatment that they need and require, utilizing the data that we have from ASCO guidelines to ensure that we're getting the optimal high-quality standard of care in a timely fashion that we didn't have to delay therapies. So, we were able to do that by going down to the minutiae of the milligrams on hand, particularly when we had a lot of critical drug shortages. So it was really creating that process to really ensure that every patient would get the treatment that they needed. For more news on cancer updates, research and education, don’t forget to subscribe to CURE®’s newsletters here.
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