From Terminal Lung Cancer To Chronic Condition

There is a lot of chatter these days about metastatic lung cancer being treated as a chronic disease rather than a terminal one. Patients receiving a diagnosis may be less likely to have an indication of how long they have left -- a time period that is almost impossible to predict with any accuracy outside of the most advanced cases. And with new treatment options, there is much hope for long-term survival. But along with this new hope comes a new type of emotional stress.

The path ahead

After an initial stage IV diagnosis, it is common for patients and their families to feel an urgency about getting their affairs in order. They may hustle to fill out the necessary paperwork, like a Living Will or a Last Will and Testament, if those had not already been executed. Finances are put in order, plans are made for the inevitable. And then, in many cases, the inevitable does not come.

Instead, there is a maintenance protocol. One complex drug cocktail turns into a simpler treatment that continues, open-ended until it doesn't. There is remission or progression, the treatments halt or re-start. For a time, there may be No Evidence of Disease. Then there may be a new tumor or several new tumors, and treatments begin all over again.

Lung cancer as a chronic disease

The process of treating advanced lung cancer as a chronic disease is an ever-shifting journey of discovery and trepidation. Clean scans are almost always temporary and new recurrences may be harder to treat than the original tumors, in part because cancer cells continue to mutate. Not only is lung cancer not a single disease with a single treatment plan, but any individual lung cancer has the potential to become a new disease of its own as it continues to grow and change.

Of course, this sounds terribly dire, but the reality is that patients are living much longer and many will outlive their cancer long enough to die of something else unrelated. There are new drugs coming on the market at a historically rapid rate. Many of these new drugs are more effective than the old ones, but no drug is perfect for every patient. There are also new methods of radiation treatment that are less likely to cause nasty side-effects while improving their accuracy and efficiency. Even surgical approaches have improved in recent years, making the process less invasive in many cases.

A new age for stage IV patients

Altogether, this is a new age in care for stage IV lung cancer patients. But it does mean that families must prepare in new ways, too. Because there is more uncertainty and there are more highs and lows. Everyone is hoping for a cure, but metastatic cancer is generally considered incurable. It simply is too likely to return, because all it takes is one cell escaping into the bloodstream and settling in some other organ or bone. It may take some time, but that cell could multiply, forming a new tumor, probably impervious to the treatment used before.

On the journey together

Scanxiety will haunt the patient, perhaps even more so if the last scan or two has come up clean. Emotionally, this can wreak havoc on a family, not just the individual patient. Cancer is a shared disease, even though it is not contagious. Family members and close friends are partners in the experience, on the journey together like a group of kids stuck together in the back seat while their oncologist drives the car. "Are we there yet? Are we there yet?"

If "there" is a cure, it is a question that cannot be definitively answered at this point. The group in the back seat gets more anxious with every passed rest stop. Sure, they can get out and stretch their legs, even run around a bit. Some may decide to exit the ride entirely. But soon enough, all the remaining passengers are back on the road, cramped together and wanting to know how long the ride will be. But no one can say. The trip has a purpose and a perceived destination, but for many of us, the trip itself is the destination. And after a while, that can take its own toll.

Editor’s Note: We are extremely saddened to say that on October 21, 2018, Jeffrey Poehlmann passed away. Jeffrey’s advocacy efforts and writing continue to reach many. He will be deeply missed.