Dispelling the Myth of the 'Lucky' Hodgkin’s Diagnosis

All too often, patients diagnosed with Hodgkin’s lymphoma are told by one or more people that they somehow "lucked out" because Hodgkin’s is highly treatable and, in many cases, curable.

This is absurd on its face since a cancer diagnosis can’t be equated in any real-world way with good fortune. Unfortunately, it does help to underscore the ongoing public misperception of Hodgkin’s lymphoma as the kind of cancer that, should you develop it, the good news is that you’ll be cured of it.

More than 1,000 families in the U.S. every year learn that a loved one has Hodgkin’s, hear the "lucky" comment, and then watch in agony and confusion and helplessness as their "lucky" loved one dies of the "lucky" cancer.

The Facts

About 40 to 50 years ago, the idea that anyone would attach Hodgkin’s and luck in one sentence was unthinkable. Straight up, Hodgkin’s lymphoma was a death sentence. That has changed thanks to the work of Henry Kaplan at Stanford and of the German Hodgkin’s Study Group, to name a few.

The rise of combination chemotherapy in the late 1960s and early 1970s marked the beginning of a profound reversal in the outcomes of patients with Hodgkin’s. According to the National Cancer Institute’s SEER statistics on Hodgkin’s, if the disease is found very early, the cure rate hovers around 90 percent, and even when found in advanced stages, it’s still around 75 percent.

For cancer, those numbers are staggering. And easy to compare to pancreatic cancer, in which more than half of the 40,000 new diagnoses made each year in the U.S. are advanced-stage, and for whom the "cure" rate is not even 2 percent.

There are of course variables to consider, as any Hodgkin’s patient knows, such as whether the diagnosis is A or B, and why A is much better than B, but that’s not relevant here.

The Unluckiest Facts

To begin, Hodgkin’s is rare with only about 9,000 new cases annually in the U.S. Compare that to the 220,000 cases of lung cancer.

What gets overlooked in the "lucky" conversation is that about 1,100 people in the U.S. each year succumb to Hodgkin’s lymphoma. This "lucky," curable disease still manages to kill.

You might want to be critical of me for not sounding the common call of hope that gets blasted around cancer, but remember those 1,000 U.S. families. In the immediate wake of a cancer diagnosis, people tend to remember very little, unless it’s especially bad and they’re a realist or it’s especially good no matter how unlikely and they’re an optimist.

To make matters worse, modern medicine makes the final months and even years of their lives a wildly trying and costly time, full of as many as four or more independently administered and unsuccessful treatment regimens that will almost inevitably include a cumulative year or more of combination chemotherapy, months of radiotherapy, and a bone marrow transplant.

The Less Unluckiest Facts

For the remaining Hodgkin’s patients, those who will survive at least five years beyond their diagnosis and be labeled "cured," the road to that cure looks nothing like anything anyone would equate with good fortune.

The current standard of care in the majority of cases is the combination chemotherapy regimen AVBD. This regimen usually requires six cycles (or between four and eight) meaning, in this case, that it lasts for about six months (a cycle here is 28 days).

Each month, on the first day of the cycle, the patient receives all four drugs. Not in the form of pills or shots, but in the form of IV infusion, a process that takes hours. The vomit potential on this day is very high.

Then, for the next four days, they receive an infusion of just one of the drugs.

Then, on day 15, they receive repeat infusions of the three other drugs.

On day 29, they start this all over again.

While this is going on, they will likely experience easy bruising, bleeding, severe fatigue, they have trouble eating because they don’t want to vomit it up and food tastes badly bizarre anyway, they have trouble drinking any liquids and trouble even brushing their teeth because of the mouth sores they develop, they might have numbing and tingling in their hands and feet (called peripheral neuropathy) and there’s a good chance they lose their hair. Not just on their head, but everywhere.

Sound lucky?

Following chemotherapy, many patients then undergo 20 or more radiotherapy treatments, which leave them fatigued and with many of the same problems they experienced during chemo.

The Luck Goes On

Now, after all of that, they get to find out if they’re among the majority of patients with the disease for whom induction (initial) therapy is successful. Even if the odds were 99 to one that it was going to be successful, is there any person reading this who thinks this would bring them any true measure of comfort as they await results from their follow-up scans? Nobody is so smug as to assume they’re among the 99. Nobody cares much about the 99. It’s the one that scares the shit out of them.

But let’s say that they do indeed learn that induction therapy has been a success, and that they won’t require second-line treatment, which might have meant something like the antibody drug conjugate Adcetris or another round of combination chemotherapy followed by a stem cell transplant.

In this case—where induction treatment did not fail them [notice I didn’t say that the patient failed the treatment, which is how it is commonly expressed, as though the patient is at fault…one of modern medicine’s semantic miracles of audacity and arrogance] their lives are forever changed. Many experience symptoms similar to post-traumatic stress disorder: every cough or tired feeling or little tiny bump on their neck, no matter how ultimately benign it is, serves as a frightening harbinger that they have relapsed. While this tends to wane over the years, for many patients it never fully stops.

And On

Hodgkin’s lymphoma is a young person’s disease. It rarely affects people over the age of 55 and is most frequently diagnosed in people between the ages of 20 and 34. You know—those crucial years where most of us get to try and figure out what we’re going to do with our lives, and get to go out and have fun along the way.

Who are the lucky ones again?

For these Hodgkin’s survivors, even if the PTSD-like symptoms wane, they must always remain vigilant, because the chemotherapy and the radiation they received that knocked out Hodgkin’s lymphoma puts them at a significantly increased risk (compared to the general population) of developing cancer again in their later years. More often than not, when it does happen it tends to be a non-Hodgkin’s lymphoma or leukemia.

On top of that, while their hair has grown back and the neuropathy has stopped, some of these patients develop serious lung problems, a consequence of one of the chemotherapy drugs, bleomycin, known to be pneumotoxic, or toxic to the lungs. And if their oncologist failed to discuss their options as they pertained to the future and their fertility—which happens with alarming frequency—they face the potential of never being able to have children of their own.

The Legacy of the Less Fortunate

The good news is that Hodgkin’s lymphoma treatment is constantly being refined by researchers and study groups. That’s in fact the great glory and the great paradox of Hodgkin’s—that it has reached a stage where in the large majority of cases the disease can be cured, allowing researchers to now focus on ways of making the treatments that cure it less and less life-threatening to the patient.

So is this sounding at all like a lucky disease to anyone? It may not be as treacherous as other cancers, but nowhere is there an ounce of good fortune here, no lucky bounces. Rather, every bit of insight into the disease, every inch that has been fought for, has been gained thanks to the lives of the less fortunate, the ‘unlucky’, the lives of those who developed Hodgkin’s lymphoma through no fault of their own, at a time when treatments didn’t exist and there was just a handful of researchers willing to try anything to help them.

Eventually, after many lives were lost, and many patients sacrificed themselves to little-hope clinical trials that saved nobody but together contributed to the growing body of knowledge, we arrive where we are today: with a relative cure rate incredibly high compared to any other malignant cancer, and astronomically high compared to its former rate, which was zero. It’s not true for all Hodgkin’s patients. For those that it is, it only becomes that way through months of hard slog and a difficult, transformational life experience, one that might result in personal bankruptcy when all is said and done.

Those patients are more fortunate than those that die of the disease. But not one of them is lucky.