Real Life Cancer Caregiving - Do Your Research

Advocacy Series: #2 – Do Your Research

#2. Do Your Research.

Bring your own ideas and the ideas of your loved one to the medical team – and find the right team member willing to explore them with you.

Ask for the clinical studies and research reports and have your oncologist explain them to you.

Meet with the radiation oncologist, the medical oncologist, the surgeon, the nutritionist, the palliative care expert (this is different than hospice), the pain center, the social workers, and psychologists.

And, get the second (or third) opinion if it’s important to you.

As an advocate, we know our loved one’s health history. We know their meds, we observe the daily impact of treatment on their body and mind, and we notice subtle changes in behavior and activities. You know when something is “off”. And likely, so does your loved one.

Jeff’s medical oncologist wants to know when any symptom changes or if something new pops up.  Is he more tired? Has his appetite changed? Is he experiencing more pain than usual? Together, we capture this research.

As new information is received, we can (often) put the pieces of the puzzle together and partner with the medical team to explore options. That piece of information, the one that doesn’t seem very important, could hold an opportunity to be explored.

Active advocates bring it to the discussion.

What Jeff says…

“For me, doing our research helped bring to light as many if not all of the options we have considered versus relying on one doctor’s opinion. When things changed with my diagnosis, we sought second and third opinions to evaluate treatment options and outcomes. It’s not that I don’t trust my oncologist. I needed to feel comfortable with the decision and to do that, I wanted the data so I could understand the scenarios.

A great example of doing the research is when Jen questioned what was going on with my stomach while in the hospital. Nobody was digging deep enough – they assumed because I have stage 4 cancer, that every symptom I was experiencing was due to cancer.

Jen pushed to find the root cause and asked for a specific bloodtest. Sure enough, when the results came back, we found out I had an infection and needed an antibiotic. Not every health issue is a result of the cancer or treatment side effect. That’s just one of a number of examples where doing research and approaching it as a team has helped to make sure that I’m taking advantage of everything that’s available to me – and uncovering every rock possible.”

Now it’s your turn…

How has doing your research helped you to navigate the daily demands of cancer?

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