What You Should Know -- And Ask -- About Your Cancer Treatment

When Allan Osborne was diagnosed with multiple myeloma in 2008, the first thing he and his wife Deb did was to start learning about it. While they both have backgrounds as educators, that education didn’t include medical topics. “We now know more about medicine than we ever wanted to,” Allan said. And it was this process that helped them become more involved in Allan's cancer care -- they now refer to themselves as "co-captains" of Allan's cancer care team.

Even if you’re not a medical professional, your input counts. You can be an integral part of the team, along with your physicians. As co-captains, the Osbornes recommend researching the disease, current treatments and treatments under investigation, and talking with others who are fighting or have fought the same kind of cancer. By taking a leading role, you empower yourself and your family to make decisions that are right for you. Your cancer team includes all the doctors and nurses but also includes you and your family. Allan stresses that Deb has an important role in his cancer team, which is why he calls her his co-captain.

Here are some steps they have taken to better understand Allan's disease and treatment.

Education

“It’s vital for patients and caregivers to be well informed, and not just hand decisions over to the doctor,” Deb said. While she acknowledges that it’s challenging at times to understand the disease and various treatments, it’s important to keep asking questions.

Many people feel that because the medical topics are so complex, and they don’t have a medical background, it’s beyond their ability to learn, said Deb. “It’s not. It might be hard, but you can learn it. It’s important,” she said.

Knowing where to go for information is half the battle. When Allan was first diagnosed, his oncologist gave him the names of a few sites he could trust for accurate and timely information, including the National Institutes of Health, the American Cancer Society (ACS), the Multiple Myeloma Research Foundation (MMRF) and the International Myeloma Foundation (IMF). He cautioned against going to other sites where information might be out of date. He and Deb went to the recommended sites to read everything they could. “Since that time, we’ve been very involved keeping ourselves up to date,” Allan said.

In addition to reading, they attend patient seminars sponsored by the Dana-Farber Cancer Institute in Boston, close to where they live. They also attend the MMRF patient seminar held every other year and listen or watch webinars and videos sponsored by the IMF.

Research treatment

When his oncologist recommended treatments for him, Allan and Deb asked a lot of questions about it, including side effects, what they could expect in terms of prognosis, the treatment timeline and anticipated lifestyle changes as a result of treatment. They asked these questions and got answers before agreeing to the treatment.

Allan said that his oncologist said they’d go one step at a time for treatment. When the doctor brought up the next treatment step, it was introduced with enough time for the Osbornes to research it before making a decision.

The Osbornes also found it helpful to ask what they could do to make treatment more successful. “Rather than rely on what the drugs can do for us, we approached it as what we can also do,” Deb said. That includes asking clinicians about exercise, diet and whether vitamins or antioxidants are helpful.

Keep asking questions

While it can be uncomfortable to continue asking the same question, it’s important to do that if you don't understand something. “We don’t leave an appointment without understanding what the doctor told us,” Deb said. “Even if he explained it the best he can, we keep asking.” Remember that those with cancer and their loved ones can be in an anxious state during these visits. It’s critical not to be hesitant to continue asking questions until the answer is clear. “It gives you confidence in what lies ahead,” she said. “It takes away the fear of the unknown for what to expect.”

To make it easier, the Osbornes recommend that the person with cancer bring someone else to the appointment. It’s hard to hear and process everything said when in an emotional state, particularly in the beginning. There’s a lot to absorb. Bring someone who might ask different questions, also as an additional pair of ears for listening. It could be a spouse, adult child or friend. And Deb says that some people record the visit so they can listen to it again at home if they’re concerned about not retaining all the information.

Learn from everyone

The Osbornes found that the oncologist was helpful, but so were the IV nurse and nurse practitioners, who they saw in conjunction with the doctor. The IV nurse who administered the chemotherapy provided them with a lot of information about the effects of the medication.

Getting support from those who have had multiple myeloma was also valuable. They joined a support group at the Dana-Farber Cancer Institute, and are involved with a program that matches people with mentors. “The doctors are wonderful, but if you haven’t walked the walk, there’s a lot you don’t know,” said Deb. The Osbornes trained to become mentors to those who are newly diagnosed. For people getting treatment at hospitals or health centers that don’t offer a mentoring program, the Osbornes recommend asking your doctor about programs or reaching out to the MMRF and ACS.

Being captain of your cancer team can make a big difference in your outlook. “You need to be invested in this,” said Deb. Taking on a leadership role in Allan's care gave the Osbornes a greater feeling of control, which improved their understanding of the disease, as well as the family's morale. 

 

 

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