What Comes Next?

Multi-tasking has never been my forte and so I like to keep my schedule organized.  Mondays, I see all of my on-treatment patients.  Tuesdays and Thursdays I see new patients in consultation.  Wednesdays are reserved for treatment planning and research projects.  But Fridays—well, Fridays are usually the best day of the week.  Not only is the weekend approaching, with time to spend on my menagerie and the ever present home improvement projects, but on Fridays I see my follow up patients.  Nothing is more gratifying than seeing a patient who was near death from a locally advanced head and neck cancer a year ago leading a normal life now, back at work, and grateful not only to be free of disease, but also for the excuse to leave work early on a Friday afternoon for a follow up visit.  Together we’ve shared many a TGIF moment!

Sometimes, however, the first follow up visit that a patient makes is not such a cheerful encounter. Yesterday was such a moment.  A young breast cancer patient came in for her first follow up a month after completing all treatment for her early stage, but high risk breast cancer—she had her lumpectomy and sentinel lymph node dissection, followed by four rounds of dose intensive chemotherapy, and finally, her radiation therapy to the breast. She is a beautiful young woman, and despite her hair loss from the chemotherapy, her presence and broad smile lit up the radiation therapy department every day when she came in for treatment.  But when she arrived yesterday, something had changed.   Despite her artfully sculpted short fringe of hair, her colorful bangle earrings and her pretty red lipstick, she answered my nurse’s questions with terse replies, fighting back tears.  When I entered the exam room, the floodgates opened.  I was horrified, took her in my arms and said, “What has happened?  What is the matter?”  Through her tears she managed to blurt out, “I just don’t know what comes next!”

There have been many scientific papers written on the phenomenon of depression post cancer treatment, mostly relating the depression to physical symptoms such as fatigue and other side effects of treatment. I know that there is a different reason because I see it at least once every Friday.  Cancer, especially those like breast cancer and head and neck cancer which require multimodal treatments, is a disease that keeps you busy.  Once the diagnosis has been made, and the treatment plan is laid out, the patient has a new career.  Just as with any other job, there is new terminology to be learned, new orders to follow, and new sensations, both emotional and physical to experience and cope with.  People are surprisingly resilient—after the initial anger and “woe is me” moments, most patients get their game on.  They take care of their incisions, they appear for their blood work, they shore up their reading material and their support systems for their chemotherapy, and they organize their schedules around their daily radiation treatments.  In short, they put one foot in front of the other, one day at a time, and they count the days until their treatment will end (and trust me, never argue with a patient who tells you they have only 12 more radiation treatments when you think they have thirteen—the patient is ALWAYS right!)

The hard part is when the treatment ends.  Fears that have been shoved deep under while the patient is so busy just getting through each day of treatment surface with a vengeance.  The demons of what might have been, and what might yet be creep through the doorjambs and windowsills of dreams.  For patients who overcame the shock of their diagnosis, and who battled through the side effects of their treatment—this is their time for pause, contemplation, realization and reaction.  And when it happens, I tell patients that there is only one thing to do and that is to seek professional help. Cancer is a life changing event. Denial only carries us so far.  Caring for the emotional needs of a cancer patient is not easy, and cannot always be managed by a spouse, a parent, a child or a well-meaning best friend.  When this happens to my patients—when they fall into this post treatment abyss– I tell them to get the help they need, even if it requires antidepressant medication.  This, even more than the treatment that I have offered, can be life-saving.  There is no shame in it.  From what I have seen, lux ex tenebris.  Whatever comes next, come what may.

How Do I Know This is Working?

This is the question I get asked the most:  “So Doc, how do I know that this is working?”  Sometimes my patients come to me with visible or palpable disease—something on the skin that they can see fading away, an enlarged lymph node in the neck that shrinks visibly during treatment, a lump or a bump that disappears, much to the gratification of both patient and doctor.  But most of the time, this is not the case.  Most of the time, the tumors are either deep inside, and not seen or felt, or the tumor has been removed, and we radiation oncologists are called in to do “clean up” work after the surgeon.  As disturbing as it might be to a patient, most of the time, we don’t actually know that “it”, meaning the radiation, is working.

I’m old enough to know that life is not black or white, right or wrong, on or off.  But still, as an optimist,  I  am a person who likes absolutes—I have always believed that if you play by the rules, you deserve to win.  I dot all of my  “I’s” and I cross my “T’s”.  I was the kid who NEVER colored outside the lines in my coloring book, and now that I am a grown up, everything should be in place:  my patients will attest to the fact that I am likely to rearrange the furniture in the consultation room if the cleaning people have set anything off kilter. I don’t see this as obsessive-compulsive—I see it as maintaining order in a disordered world.  I like to see justice served, the plates cleared off after dinner, and I do not eat dessert first.   In my linear world, the beginning is the consultation, the ending is the cure. The daily radiation treatments are the means to that end.  Why should my patients expect less?

So what do I tell my patients who ask tentatively, half way through treatment,  “Is it working?” when they have the invisible tumors, the ones deep inside, or the ones where the surgeon took most of it and we’re seeking out and destroying those microscopic stragglers?  One of my teachers once said, meaning to be humorous,  “Radiation works best when there is no disease!” Even the patients with the palpable masses that melted away—how can we be sure that every last malignant cell is gone?   At the end of treatment, my patients want to be told that their disease has been vanquished and will never come back.  Some doctors will oblige.  They will say  “We got it all”.  Or they say, “You are cancer free.”  This is despite the fact that there is not a single diagnostic test on the planet that can support that claim.

We oncologists prefer to use the word “remission.”  Or “complete response.”  As in, “You are in remission.”  Or “You have had a complete clinical and radiographic  response to treatment.”   We would love to say, “Your cancer is cured,”  because that is ever so much more satisfying than stating the truth, which is that we do not and cannot know for sure.   Sometimes, somethings, some days—you just have to take it on faith and try to move on.  Even if you are not a believer.

Here is what I tell my patients. I tell them that first the side effects will fade from their bodies and their memories.  And then  there will come a day when they will actually miss the camaraderie and support that they got from their chemotherapy and radiation teams. I tell them that the sun will rise and the sun will set, and they will bravely put one foot in front of the other.  And one day, before they know it, they will wake up and stretch and smile and they will have forgotten, just in that moment,  that they ever had cancer.  And that’s when they will know, it worked.

Fire and Ice

“Some say the world will end in fire, some say in ice…..”     Robert Frost

Sometimes there is a very fine line between doing too much, and not doing enough.   I have been thinking about this lately as I watch patients go through radiation therapy.  It’s not  just the acute side effects that worry me with radiation, it’s the late effects also.  One only needs to have known a few patients who were treated for Hodgkin’s Disease in the 1970’s, with now archaic radiation therapy techniques, to realize the havoc that can be wreaked  later, in the form of breast cancer, coronary artery disease and other secondary malignancies.  And yet I always counsel patients who need the treatment to take it, because as hard as it is to say this, the cancer that the patient already has is far more likely to kill him than the theoretical risk of something bad happening 25 years down the line.  For some reason, patients have a hard time understanding this concept.

When it comes to an individual patient, the radiation dose is sometimes the issue.  Most cancers have a clear dose-response curve, where the higher the dose, the more likely the tumor will be obliterated– up to a point, and that point varies from individual to individual and from tumor to tumor. At the highest doses, the complication rate starts to rise, and some complications can be quite severe indeed.  So one of my duties is knowing when to stop, when enough is enough.

When I was a young doctor, just out of residency, the first year of practice was the hardest. One of my very first patients was a 50 year old Polaroid executive with a very advanced form of nasopharyngeal cancer.  I had the sudden and startling knowledge that I alone was responsible for curing this man—in those days chemotherapy and surgery played no role in treating this type of cancer.  It was terrifying to have that responsibility, even though I had been well trained.    I asked one of my mentor/ teachers about the total dose that he would use.  He gave me a rather conservative number, stating grandly that “A tumor recurrence is an Act of God, but a complication is YOUR fault”. I went with the conservative approach; the patient was cured, and seven years later I named my third child after him.

Many years later, I was chatting with a colleague and we were talking about philosophies of treatment.  I drew myself up, and in my most senior, most pompous and most commanding voice I said:  “A tumor recurrence is an Act of God, but a complication is YOUR fault!”  He laughed.  I had ten years experience on him and he actually laughed at me.  And he replied, “Well, my own mentor always said to me, the WORST complication is a tumor recurrence!”

Are you, my readers, fire or ice people?  I’ve discovered through the years, that “cooling it down a bit” has served me well.  But then again, I’ve never been a risk taker.  Not with my life, and not with others.