What Matters Most for Advanced Cancer Patients?

Everywhere you look these days, there are stories about new developments in cancer treatments. What was once considered a mysterious terminal disease is today a group of many different diseases that function, spread, and are treated in very different ways.

The promotions for new treatments hail these developments and suggest the first real promise of a cure for cancer is on the horizon. People are surviving longer with cancers that previously would have killed them. The disease is now more effectively managed. But as we see all these advances coming in the near future, we need to remember that life is about living. Quality of life matters.

Leukemia is now potentially curable, thanks to a new treatment that utilizes the body's immune system, still in the testing phase. That goes beyond previous successes in managing the disease with a once-a-day pill regimen.

A new drug for advanced breast cancer has just been approved by the FDA. Kadcyla, developed by Genentech, combines Herceptin with a toxin that not only has fewer side effects, but kills more cancer cells without damaging healthy cells, giving advanced breast cancer patients an average of six more months of survival over other treatments. It's almost impossible not to be excited by such news, isn't it?

As cancer caregivers, one of the most important jobs is to keep informed about the newest treatment advances. Why? Many reasons. You might be able to get your loved one into a trial for a promising new drug. You might just latch onto the best new option that extends your loved one's life long enough to improve survival, especially now that cancer is a disease that can often be managed over time. Cancer isn't always a death sentence any more.

But cancer caregivers also have another job, that of making sure that comfort is a built-in part of cancer treatment and management. So often, the promise of a cure is the carrot dangled before cancer patients. "If you get through this hurricane and remain on your feet, the clouds will part and you'll see sunshine again!" Patients go through hell in the hope of a rainbow after the storm. What if they never see the sun again? What if the clouds don't part and they die before the winds subside? Our goal as cancer caregivers should always be to give our loved ones the best shot at enjoying those blue skies, even if only for a few weeks.

If you've ever sat with a cancer patient in chemotherapy and tried to soothe the discomfort, if you've ever rubbed lotion on a loved one with radiation burns and felt the heat on the reddened skin, if you've ever had to help a loved one deal with painful scar tissue in the aftermath of cancer surgery, you know that dark side of cancer treatment. Sometimes it can feel like we are in cahoots with some horrible band of torturers, out to make our loved ones miserable. We encourage our loved ones to take it one day at a time. We cajole them into sticking with the actions that we hope can make a difference. We offer them solace that sometimes falls short, leaving us feeling guilty that we're pushing cancer patients to the edge of agony.

Any good cancer caregiver understands that without quality of life, it doesn't really matter how long a loved one survives. What good does it do for someone to live an extra three months if those months are spent in the hospital, in bed at home, or in a recliner, unable to partake of life? That's not living, that's existing.

I was reminded of this earlier in the week, when a relative died. The family was relieved that the suffering was finally over. They understood that the struggle robbed the patient of what mattered most. In the last few months, the descent towards death was swift and cruel. There was no fairy tale ending. Sometimes, even with the best care, it's not possible to avoid the pain.

As advocates for our loved ones, we should always focus on making life worth living. When we hear that there is a new drug that actually has fewer side effects than the current treatment regimen, which is the case with Kadcyla, we should consider finding out more about the treatment options. But we should also understand the risks. Kadcyla works because the toxin doesn't become active until the antibodies to latch onto the tumor. That protects healthy cells from unnecessary damage during treatment. On the surface, it all sounds so good, doesn't it? This is a new way of fighting advanced breast cancer.

By the same token, there are some serious risks to using Kadcyla, including heart and liver damage. That means that it might not be a good option for someone who has already been knocked for a loop by previous treatments. Some long-time cancer patients often have serious heart issues, due to the side effects of chemotherapy. That may make the drug a huge risk for your loved one, especially if she only gains a few months that keep her from living her life out loud.

For many blood cancer patients, the race for the cure is often tempered by the realities of the disease. Many leukemia patients have been treated with a once-a-day pill and they remain in remission far longer than patients a decade ago. Even as researchers tweak the medications and extend life, they are able to find medicines with fewer side effects. That is definitely a boon to quality of life. All the more reason why cancer caregivers should continue to educate themselves on new treatments that might be appropriate for their loved ones. But we should also understand the price our loved ones will pay for the promise of a little more life. What is it worth to try to stay in the game of life? For some people who have bone marrow transplants, the pain and complications can be an acceptable risk. For others, the hardships are too much of a sacrifice. How do we, as cancer caregivers, learn to recognize when to push for more and when to back off?

One of my biggest inspirations for proactive cancer management was a wonderful woman I met in the chemotherapy room when my mother was being treated at a cancer center. A twenty-year survivor, her cancer had popped up all over her body over those two decades, but she was still alive and kicking. I asked her what her secret was and she shared it. She learned to recognize the symptoms as soon as they occurred. She knew the signs that cancer was growing inside her again, so she would get herself checked out. And every time one cancer center would exhaust its treatment options, she would go shopping for a center that was up on the latest treatments for whatever type of cancer she had. She was motivated to survive. She had a good caregiver in the man she married long ago. But it was always her choice to continue to fight.

And that is my message to all cancer caregivers. As much as we can love, we must recognize that cancer patients are the ones who are taking all the risks, enduring all the hardships of the medications and treatments. At every junction of the cancer management road, we should be asking, "What do you want to do?" We should never think that, as the wind beneath the wings of a loved one, we have the power to propel an advanced cancer patient above the storm clouds. Cancer touches every patient in unique ways, many of which are uncomfortable for the sufferer. Our most important responsibility is to help our loved ones find the best comfort possible, through medications, nutrition, and meeting the physical needs that arise from treatment and side effects. But comfort is more than just physical. It's about understanding that the mental anguish and the psychological worries can sometimes be more overwhelming than any physical pain.

If we start each day with the idea that we will look for ways to make life more palatable for our loved ones, we temper more of the overall negative effects of cancer and cancer treatment. Advanced cancer patients actually survive longer with palliative care than aggressive treatments that knock the wind out of their sails. That, in combination with newer drugs that have fewer side effects, may make the difference between existing and enjoying the life that's left. If one day of joy is worth more than gold to you, remind yourself each morning as you rise that cancer management is about living life. Help your loved one take advantage of new treatments that make sense. Don't fight for the sake of survival. Fight for the joy of blue skies, belly laughs, and beautiful moments that warm the heart. Make life matter.