One More Question

I have written a couple of times about questions patients ask when first diagnosed with cancer:  “Am I going to die?”  “How did this happen?”

Another question I hear emerges later.  It comes after the diagnosis, treatments, surgery and the scans that show no evidence of disease (NED):  “Will the cancer come back?”

Once you are diagnosed with cancer, it becomes part of your permanent landscape and fear of recurrence simply comes with the territory. 

The fear causes some people live in denial.  They don’t have follow up appointments, they don’t change their behavior.  I heard of a couple who owned a tanning salon and argued with melanoma patients that their business caused no harm.  Even when the husband was diagnosed with melanoma, he continued to push indoor tanning, and did so, as they say, “’til the day he died.”

Others become so worried about recurrence they will do anything that might (or might not) reduce the likelihood.  This may involve entering a treatment regimen with limited or no benefit, looking for a clinical trial that may be available to someone with no evidence of cancer, or taking massive dietary supplements to boost the immune system.

Between these two ends of the spectrum is a lot of common ground, and perhaps some lessons to be learned.

First, worrying about recurrence is normal.  If you watch the conversation on MPIP, you will see people with melanoma and their family members poignantly share these anxieties.  The worry ramps up around critical events.  For example, “scan anxiety” persists even years after being declared NED.  For most, the period between having the scans done and hearing the results is the toughest.

While worry is normal, we know that there are warning signs that something is amiss.    If you living from alarm to alarm, having trouble sleeping, seeing major changes in your core relationships, it is time to get help dealing with the anxiety and stress.  This is, in a very real sense, part of cancer care.

Second, a network of support is important even after you complete the cancer treatments.  Here’s why: cancer treatment is all-consuming.  You deal regularly with doctors and nurses and social workers and appointment managers.  This is often a love/hate relationship that is present every day of the cancer fight.  If you get to the point when the cancer is gone, all of that stops.  The appointments, the infusions, the pills, the reminder calls—it all disappears. 

The friends who dropped off a casserole or offered to babysit the kids or came by to keep you company during an infusion, they don’t necessarily go away but, to them, the cancer is over.  For you, life as a survivor has just begun.

The fact is, you still need support and shouldn’t be afraid to ask for it – whether it’s one month, six months or one year after showing NED.   

Third, remember that buying time pays off.  I have always heard that cancer treatment doesn’t have to cure, it just has to keep you alive long enough for the next therapy to come along.  “You never know what breakthrough will take place in five years,” is the old saying.  For the melanoma community, this has been something of a lie. After all,  13 years went by with no new melanoma therapies approved.  Thirteen years of failure after failure.

But right now, for melanoma patients, the old saying has a lot of truth to it.  Now things are finally beginning to move.  This year alone two new drugs have been approved for metastatic melanoma.  Next year may see another one, and the following year should see more. 

Not that long ago, the next breakthrough felt like a mirage.  Today, it’s inconceivable that we will go more than two years without a new therapy coming into the clinical setting. 

No-one wants to face cancer a second—or third!—time.  But if the cancer does come back, all those battling melanoma can take some comfort in knowing that the treatment landscape is changing very quickly indeed.