Prior to confronting a life-threatening health event, all the information we are societally provided is engineered towards the best possible medical outcome, so it is a shock when a medical outcome is just one of several matters that must be considered when the cancer bombshell is dropped. For example, in the American medical “system” inadequate financial planning during a period of illness could do more to harm an individual than not obtaining a second opinion. Society insinuates that obtaining a second opinion should be immediate and instinctual. Combined with the self-imposed pressure to do every forthcoming step correctly, not getting the diagnosis reaffirmed seems like absolute failure. If handling a crisis were simple this expected course of action would always be viable, but you quickly learn that nothing is simple with cancer and viability needs to be determined on a case-by-case basis.
Logisitics of obtaining a second opinion
When a patient is in a state where the simplest direction or process cannot be followed, as may be the case in a brain cancer patient, caregiver responsibilities cascade overwhelmingly. With such a dire diagnosis, one immediately embarks on a whirlwind of information-gathering and planning that includes
- learning about medical treatments, outcomes, alternatives, side effects, options, best practices, doctors, and health insurance minutiae;
- setting up and maintaining possibly dozens of appointments;
- understanding the legal ramifications of the situation on the patient and the family and establishing power of attorney;
- financial planning including deciphering the patient’s circumstance, as well as anticipating the impact on a family’s finances;
- figuring out the best possibly quality of life for your loved one
– to name a few.
When a patient can manage some of their health care on their own, then, with support, obtaining a second opinion may not be nearly as challenging. However, in a situation where the caregiver must take over for the patient entirely, as in our case, there are several obstacles. The most restrictive is the inability of the patient to get to appointments, or even just sign in, on their own. The most common course of treatment for brain cancer patients is several weeks of daily radiation combined with chemo therapy. The chemo, in the form of Temodar, is given in pill form, which is a relief because that can be administered at home. But of course radiation is only given at a clinic, so daily commutes are necessary. Keep in mind that the caregiver most likely has a day job, has personal responsibilities that can’t ignored, and may have a family of their own that also needs attention. Also keep in mind that cancer treatment is not a short term course of action. If the first opinion treatment requires so much time invested, it is not easily possible to add a round of second opinion appointments.
“What if I have failed?”
When you believe you only have one shot at getting it right, the pressure to do things correctly is immense. Society may blame any diminishment in the patient’s health as potentially the caregiver’s inability to “do enough.” If the patient is capable of making his or her own decisions, then not doing everything possible may mean the patient must have “given up.” Society’s assumptions are incorrect and the pressure put upon patients and caregivers, even when self-imposed, is an unnecessary additional burden.
Advice from a social worker
I visited CancerCare out of desperation to get a sense of direction. Even though I felt my father had received the best medical care up to that point, the guilt of not having gotten a second opinion weighed heavily on me. In our suite of care providers, we had the hospital’s chief of neurosurgery on the case, as well as a top-rated medical oncologist and a radiation oncologist (who was also later recommended by a family friend). This sounds like a dream team and yet I couldn’t stop feeling like I hadn’t done enough because I had not purposely chosen these people, they had been assigned to us by the hospital. The social worker at CancerCare told me that getting a second opinion is really about feeling comfortable about the diagnosis and medical care-giving. I was comfortable with our doctors and didn’t feel they had steered us wrong. My information-gathering activities had told me that there were few treatment options for my father and we hadn’t exhausted any at that point. Besides, we were already regularly seeing three doctors and had seen countless others. How many does it take before I actually have a second opinion?
More can always be done if you are superhuman enough
Exhausted from being in the hospital for about two weeks, traumatized from a bad night-nurse experience in the ICU after his biopsy, overwhelmed by the onslaught of doctors that saw him in the hospital and thereafter, suffering from confusion over the types of medications and treatments being prescribed, and the stress of moving in with me meant that my father couldn’t take more. Of course, I was with him every step of the way, taking on the full responsibility of his medical situation as would any caregiver. The deluge of responsibility is a reality that most people could not be aware of on the outset.
I’m not suggesting that a second opinion is unimportant; I don’t write this to convince people dealing with cancer to avoid a second opinion. Of course getting confirmation on a diagnosis makes sense to do. What I am saying is that we are not superhuman, especially not when dealing with such illness. After one attempts to manage all aspects of a patient’s life, finding more doctors, getting to more appointments, and managing all that this entails may be impossible. Do not beat yourself up over not having done everything like in the movies. It is highly doubtful you have not done enough. Most likely you have seen several doctors but still may not have technically obtained a second opinion.
Cancer is not easy. People who have not faced the reality of the problem will never really understand. You will challenge yourself to do your best — who wouldn’t for a loved one — but don’t feel like you failed if a second opinion, or any “must do” task, becomes insurmountable.
To the hospital’s credit, it did automatically require a second opinion on the biopsy results. As someone not in the medical field, I had no idea a biopsy, or any test, could have a second opinion done on it without going through the process of acquiring the materials again. In my father’s case the results were no different.
