Friday, May 30, 2008

'Fight like Hell': Nasopharyngeal Cancer and Pop

In early November of last year my father was diagnosed with nasopharyngeal carcinoma (NPC). Prone to hindsight bias, I could not forgive myself for not paying closer attention to his signs and symptoms. They indicated, it seemed, to the obvious presence of a tumor. Anger towards myself and towards my Dad’s Primary Care Physician (PCP) for not detecting it in time led me to a near psychological breakdown. Since June of that year I had taken my Father for monthly appointments with his PCP, and each visit presented the same complaints: 

Nasal congestion
Increasing headaches radiating towards the occipital lobe
Radiating pain towards his neck
Slight vision problems, and
Moderate hearing loss. 

With each symptom becoming progressively worst, I began to question the PCP’s competence. The care rendered included ongoing control of high blood pressure along with new prescriptions that included pain med’s, nasal decongestants, and even muscle relaxants for his neck problem- this just in case stress was the culprit... Vision assessments revealed no significant vision loss. After two months of treating just symptoms, the PCP referred Dad to an audiologist rather than an Otolaryngologist (ENT) to asses his hearing difficulties; for nearly three weeks we waited for the referral appointment. Finally, according to the audiologist, the preliminary results indicated “hearing impairment” possibly explained by his age and employment background (e.g. Dad was 74 years-old at the time, and had worked with industrial machines for nearly 15 years) which could be alleviated with a behind-the-ear hearing aid (BTE). By late October, his ability to breath through his nose was compromised. Finally, the PCP referred us for an immediate consult with an ear, nose and throat doctor (ENT).

The doc found a bilateral ear infection and bilateral accumulation of fluid on the middle ear. Diagnosis: otitis media with effusion. According to the doc, the fluid was disturbing the regular sound wave vibrations that take place between the auditory ossicles (malleus, incus and stapes) and the tympanic membrane; draining the fluid with an ear tube (surgical grommets) and taking antibiotics would fix the problem. The procedure was done at the ENT’s office. It was funny how we entered the ENT clinic having to shout to give Dad directions, and then exiting with Dad’s silent smile. Just like that, his hearing returned back to normal. No more irritated people having to raise their voices just to say, “Hola, buenas tardes.” 

Now it was November, and the only symptom that had improved was his gradual hearing loss. The other symptoms were becoming progressively worse and now included limited range of motion of the neck and stiffness. Things were simply not making any sense, I thought. So the next week, I said “F*** the PCP, we are going straight to the specialist” (BTW, this is something you cannot always do in the U.S due to limitations imposed by our managed care system). The ENT became very concerned when he realized that symptoms had been ongoing for several months. The ENT ordered a CT scan of the nasopharynx even though a sinus infection (sinusitis) was unlikely- Dad had already been through a two-week regimen of antibiotics. 

CT results came back. Lo and behold, a small mass in the posterior nasopharynx just under the sphenoidal sinuses. After a more thorough CT of the head and neck was performed, the radiology reports indicated the presence of a small mass (less than 3cm) in the base of the scull, located under the clivus. It was about to invade the cervical bone (c1). The doc said medical oncology would take over the case because surgery was too risky, if not impossible. Dad had been smoking since the 1950's and had failed at multiple attempts to stop the addiction. Sensibly, doc suspected the mass in the base of the scull was secondary to a primary source of cancer (metastasis). Given Dad’s history, it was probably the lung, if not the lung, then probably the colon. However, imaging tests were negative. Doc now knew the primary cancer source: the base of the scull. After a 1.5 week wait, a biopsy was performed. Results: Squamous cell carcinoma of the posterior nasopharynx.

The radiation oncologist and hematologist now came into the picture. The tumor was aggressively treated with a combination of radiation and chemotherapy- this, they said, would give Dad the highest chance at survival. Only someone with stubborn hope and strong self-affirmation would be willing to undergo such invasive forms of treatment. In cancer television commercials, we often see cute, inspirational picture of kids without hair due to Tx secondary effects; we become inspired because despite their obvious grief, they still manage to smile… God bless their souls. But the commercials do not show how the skin burns, peels, bleeds, and smells from high energy radiation, and they can’t really show the extent of their actual pain. Lance Armstrong once said,
“If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or fight like hell”.

Dad decided to fight like hell…
After having a feeding tube inserted (percutaneous endoscopic gastrostomy tube) and nearly 6 weeks of radiation/chemo, Dad had to stop treatments because his airway became compromised. A combination of things occurred- severe inflammation of the nasopharynx, mucositis, pneumonia, and the accumulation of scar tissue in the airway. He could no longer breathe on his own. I had said goodbye to Dad the day prior to his emergency hospitalization due to a medical school admissions interview at UC Davis the next day. While at Davis, I got the phone call on what had happened that day. The interview at Davis sucked, to say the least, and I rushed to my flight back home. Once at the hospital, I had a few moments with him before a decision was made to intubate Dad. He was intubated and placed on a ventilator machine. They sedated him with propofol. Dad stayed on the ventilator machine for nearly two weeks. He would remain in the ICU for 1 month. His fighting spirit inspired all of the medical staff and our family. Gradually, Dad gained the strength to breathe independently with the help of a tracheostomy.

While at the ICU, imaging studies were done to determine the progress of the treatments. The CT scan showed the tumor had grown twice (2x) its side, and had invaded the bone causing bone destruction of C1. Neurological studies indicated that cranial nerve XII function was deteriorating. Consequently, Dad was losing his ability to move the right side of his tongue. Clinically, it became clear that radiation and chemotherapy were ineffective in destroying the tumor, or at least stopping its growth. The hematologist gave Dad two to three weeks expected life expectancy, and our radiation oncologist anticipated a couple months of life left, at best. To describe the feelings and emotions that happened when hearing such horrible news is a futile endeavor. We all wept and prayed…

Dad was deemed terminally ill, and we were given the advance directive to sign indicating that our family understood that hospice care would ensure Dad spent his last days in comfort. Nevertheless, Dad’s courage proved the hematologist wrong when he was able to walk, talk and laugh even after the two-week projected life expectancy. He would spend a couple hours in the recreation room with other terminally-ill patients lifting 5lb. weights and smiling in front a mirror… After 1-month of constant improvement, we suspected our doctors could be wrong…I remember reading that the effects of radiation may continue for several weeks after treatments have ended [1]. It was clear to me- Dad was not slowly dying. He was slowly thriving. The Doc’s had to be wrong!

We asked for a second medical opinion from other specialists, and due to his progress, after weeks of reluctance by some medical professionals, further radiation/chemo was recommended. The same doctors that had given up on Dad were now scheduling for more radiation/chemotherapy. What was my Dad’s response to the prospect of more radiation? He said, “Good deal,” With a hopeful grin.

Prior to Tx, he had imaging studies done to see what was happening with the tumor. The clinical symptoms were not correlating with the previous imaging results. I was driving my Dad and Mom in my car when the radiation oncologist called my cell, “Michael, I got the CT and the tumor shows a smaller mass. I cannot explain it. In all my years I’ve never seen this before; the tumor that we thought had doubled in size is now smaller than when we initially started treatment” I then asked him, “What’s going to happen next?” He replied “‘Tomoradiation ASAP!” This innovative form of radiation Tx has saved many lives because it targets the specific tumor and not the surrounding tissues, the following video shows how it works.
Dad underwent tomotherapy radiation and chemo. for two more weeks. He took it like a real champ. Go Dad!

It is almost three months since he finished Tx. Soon a PET scan will reveal the progress. Remarkably, Dad went from using a Fentanyl patch and 15mL’s of hydrocodone/4 hours for pain management, to just a few mL’s of hydrocodone/day. Dad is uncertain of whether his recovery should be characterized as a miracle. Perhaps the second CT scan was misinterpreted- the presence of scar tissue around the actual tumor could have made the mass look twice as large…who knows. One could try to pose many logical explanations for Dad’s case and disprove a miracle, but the reality is our family went from despair to elation. Dad’s courage has changed many lives. God? Science? Maybe both. Regardless of the reasons, as an up and coming medical student, I hope to see more patients with Dad’s courage. Miracles do happen!


Anonymous said...

Stubborn as Hell, but so are the best fighters. Keep your head up Bubba

Anonymous said...

Im so very sorry for what you endured.. im glad your dad was a fighter and made it through. I however know exactely how you felt at that time, my mom was diagnosed with nasopharyngeal squamos cell carcinoma a few months back.. the drs here had did the same exact thing, she was on antibiotics for like 4 months before she seen a ent.. she had many strokes which is why we took her to the er and her ent dr had reccomended we sent her to johns hopkins.. they was amazing down there but at this point my mom has pneumonia :( im very worried for her hence i work in the medical field and i see what pneumonia does, not pretty... I pray my mom has the strength your dad did and can fight tooth and nail until the cancer is GONE.. i found your story very inspirational beings my family and i are going through the same thing.. cancer is rough, i hate it with every ounce of my soul.. im very glad for you and your family ... Thank you

Anonymous said...

my mom has been recently diagnosed with nasopharyngeal carcinoma. We got a PET CT done 3 days back. Im very scared for her right now and can imagine the ordeal you and your family had to undergo. but your story is very inspirational. my mom is 53 and otherwise still healthy. both I and my sister are doctors and i can relate to your feelings for not suspecting cancer. but this type of cancer is often confused with other ENT problems and is mostly detected at stage 3 or 4. every time i see my mom's brave smile i want to start crying but i have to hold myself back and be strong for her sake. im constantly trying to pray to God and i wish for a miracle to take place in her case. i know that the battle ahead of us is going to be a long one but i have faith in my mom's fighting spirit and positive attitude. just last night she told me that she wants to live for the both of us.