Advocate For Your Own Health: Balancing Trust With Facts

Advocate For Your Own Health

Nonno surrounded by his family

by Nadia Fiorita

My grandfather was diagnosed with lung cancer about four years ago at the age of 82. At the time, it was absolutely devastating news. The doctors gave him only 3-6 months to live.

I’m happy to report that Nonno (as all us grandchildren call him) surpassed everyone’s expectations and is still alive today. And he was able to survive without chemotherapy or radiation treatments, which is amazing.

Unfortunately, after a recent follow-up visit, his doctor found multiple tumors on the left side of his brain that caused Nonno to have frequent headaches. Again, this was crushing news for my entire family, especially my grandfather, since he was looking forward to going to Italy the following week.

During that follow-up visit, the doctor strongly recommended that my grandfather begin immediate radiation treatments to target the largest tumor. The doctor passed along some information about the potential side effects of radiation, but reassured all of us that my grandfather would still be able to travel to Italy after receiving the first round of treatments. My grandfather wanted so badly to believe that everything would work out that he took the doctor’s reassurances to heart and put the potential side effects out of his mind. He thought he would get better and be able to go to visit his homeland. But right after the initial treatment, my grandfather’s health began to decline rapidly: he lost his energy and his appetite, and it became clear that he was getting sicker with each passing day.

As I think about this experience, it becomes very clear to me that we Americans put a great deal of faith and trust into our medical system. For example, my family trusted that this radiation treatment would work more or less in the manner the doctor described, and, while it did temporarily shrink the largest tumor, the side effects were far more severe than the doctor suggested. Was the treatment worth the cost? My grandfather wasn’t able to see his family in Italy, which was a huge emotional and psychological loss for him.

My father thinks that, regardless of the negative impact, the radiation treatment was the right thing to do because it has helped prolong Nonno’s life. But my dad’s sister, Aunt Viola, has mixed feelings — whenever she sees Nonno struggling, she regrets that he underwent the radiation. Personally, I wonder what would have happened if he hadn’t chosen to get the radiation treatments right away. When the doctor showed my grandfather the scans of the brain tumors, naturally my grandfather felt a sense of urgency to get them taken care of. Brain tumors are tremendously scary, and being shown the physical evidence of their existence is bound to shock any person into treatment. But how urgent was the treatment? More specifically, would my grandfather have been better off had he been able to see his family in Italy first and then come home to start the treatments? That’s a tough call, made even harder because the doctor told Nonno that he would be able to travel to Italy even after starting the radiation, which, like the lung cancer diagnosis of a few years before, turned out not to be true.

Much of medicine is inexact. Treatments and recoveries don’t always go as planned, so it’s unfair to suggest that a doctor’s credibility is at stake with every diagnosis or treatment plan. But one can certainly see the benefit of advocating for our own health or the health of those we love. Putting all your hope and faith in someone else is a dangerous proposition, no matter how smart and talented that person might be. Your life is your life, and no one else’s.

As a clinical social worker, I often find myself assisting families who are going through similar circumstances. While each situation is unique and comes with its own set of challenges, my experience allows me to offer these suggestions:

  • Do your own research. Get educated on the complexities of the condition you’re facing and all its possible treatments, and not just the conventional protocols. There are all kinds of different interventions available, but my grandfather’s doctor communicated only one option to him.
  • When a particular medication or treatment is prescribed, ask about the possible side effects. Ask why this medication is being recommended, and how other people have responded to the medication or treatment. We don’t think that our grandfather’s doctor really explained what we should expect after radiation — there was more hope communicated than worst-case scenarios, which in itself is not a bad thing. Maintaining a positive outlook is always helpful. But people should be given a fully realistic explanation of what they can expect.
  • Get connected with other people who have gone down the same path. Hearing from someone else of the same age as my grandfather who had undergone similar radiation treatments could have given us more insight and helped us, potentially, to understand the downside.

In the end, it is helpful to remind ourselves that the decisions made in the past were the best we could make with the information we had at the time. They cannot be undone, and we should allow ourselves respite from the self-blame and “what if” questions.

It has become more essential than ever to advocate for our own health and the health of our loved ones, especially those who may not be able to advocate for themselves. We must ask questions, gather information and carefully challenge what our medical providers recommend. At the end of the day, it is our own mind and body that will guide us to make the best decisions. And in all situations having to do with health and wellness, knowledge is definitely power.

I’m not sure how much time our Nonno has left, but as we move through this challenging time, it is the special moments that I’m sharing with him and my family that bring me the most joy.

 

Nadia Fiorita, MSW, is a clinical social worker with Family Centers. Serving Greenwich, Stamford, Darien, New Canaan and Westchester County, NY,  Family Centers is a United Way, New Canaan Community Foundation and Community Fund of Darien partner agency that offers counseling and support programs for children, adults and families. For information, call 203-869-4848 or visit www.familycenters.org.



Leave a Reply