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Sajjad Iqbal, MD

My Story of Hope, Determination and Survival

I am a physician, a pediatrician, and a cancer survivor.

Given only a 30% chance of surviving for 2 years, at initial diagnosis, I have now lived for 16 years and counting.

It all started with a sudden but partial paralysis of the left side of my face. My doctor thought it was Bell’s palsy, a common condition that goes away in a few weeks. Contrary to that, my facial paralysis got worse with time. As a physician, I knew I did not have Bell’s palsy. Unfortunately, multiple experts at various medical centers insisted it was just that. I was even subjected to an unnecessary operation for Bell’s palsy. Of course, it did nothing and my paralysis progressed.

Ultimately, I took it upon myself to solve this diagnostic puzzle. Using my basic medical knowledge and simple logic and reasoning, I concluded that the only diagnosis that fit perfectly was: parotid cancer. Unfortunately, the experts refused to accept my diagnosis, which caused further frustration & delay.

Finally, a detailed MRI of the parotid gland confirmed the diagnosis of cancer. In February 2002, I underwent an extensive & radical surgery on the left side of my face and upper neck followed by a reconstruction utilizing the muscles, tendons, nerves and arteries taken from other parts of my body.

The pathology report revealed that I had an extremely rare and highly malignant type called Salivary Duct Carcinoma that killed 70% of patients within 2 years. No patient had ever survived for 5 years, I was told. My prognosis was bleak.

I needed to summon every ounce of positive thinking, unshakeable optimism, and all the good karma I was due. I decided not to focus on the poor prognosis but on the slim chance that I CAN beat the odds. If only 30% of patients survive, then I shall be among those 30%.

If no one has ever survived for 5 years, then I shall be the first one. After all, I thought – somebody has to be the first.

With interminable hope and unwavering determination, I set out to fight my mortal enemy. I decided to learn everything I could about my cancer, did my own comprehensive literature search, and visited several experts across the United States. Besides the surgery I had already undergone, and the radiation I was receiving at that time, medical science offered little to improve the survival odds. I pushed for much more aggressive chemo-radiation therapy to reduce the chance of recurrence.

That strategy seemed to work. The two-year mark came and went and I was still alive and cancer-free. Had I completely rid myself of cancer? Not really!

Exactly 4 years after initial surgery, the cancer returned – this time in both lungs. The prognosis was grim and the treatment options virtually nil, yet my relentless quest for answers persisted.

Finally, I saw a small ray of light among the darkest clouds. The biopsy revealed that my cancer was positive for HER2 receptors, a feature found in some types of breast cancer. Luckily, a new drug, Herceptin, had just come to market, that targeted HER2 and improved survival in those types of breast cancers. Could Herceptin work for me?

Herceptin was the logical drug choice, indeed my only hope. However, finding a doctor to prescribe and administer it was next to impossible. The FDA had not approved its use in the parotid cancers so using it would be considered an unapproved “off-label use” – a term that makes most doctors nervous. In addition, a recent study involving 14 patients with parotid cancer had failed to show any benefit of Herceptin therapy. Every oncologist I consulted referred to that small study to reject my logic that Herceptin should work for me. So, I decided to go and visit the author of that study. He was most generous with his time and open to my analysis. At the end of the visit, he agreed that it made sense for me to try Herceptin and even wrote me a note to that effect.

Three months into the Herceptin treatment, the cancer nodules in my lungs had stopped growing. So, now I had a stable disease, not progressing but not improving either. Still, it allowed me some precious time to plan my next move when, inevitably, cancer would break through Herceptin treatment.

That moment came about 22 months later with sudden emergence of several new cancer spots scattered over both lungs. Luckily, my CT scan showed that all those nodules were rather superficial and could be excised by a surgeon. But, such a major surgery on both lungs was a highly risky undertaking with the possibility of serious life threatening complications and a long and difficult recovery. In addition, there was a high degree of probability that new cancer nodules would sprout up within a few months post-operatively.

My solution was that the surgery should be done via multiple endoscopy procedures (Video Assisted Thoracic Surgery). The surgery would be far less invasive with only 2 weeks of recuperation. Best of all, we could repeat the procedure if, as expected, new cancer spots appeared later.

After a long battle with multiple chest surgeons who were adamant that it couldn’t be done in the manner I wanted, I finally found a surgeon – with an extensive experience in this technique – who performed the VATS surgery. It was a huge success. My recovery was relatively smooth and the cancer has never returned in the lungs.

I won another battle but the war was far from over. Three years after the lung surgery, the wily cancer returned to attack my bones. I developed metastases in my spine and multiple other bones. Once again, I had hit a dead end. There was no standard treatment and I could not enter a clinical trial. Once again, I charted my own path.

An extensive review of the medical literature from the world over revealed 3 case reports of patients who had metastatic cancers somewhat similar to mine, successfully treated with Herceptin-based chemotherapy combinations. I presented this limited data to my oncologist. Together, we carefully analyzed the information and formulated a treatment plan.

This regimen, just like all others, could not destroy my cancer, but it stopped the progression and converted it into “stable disease,” a status quo. It has been 5 years since and I am still alive, still on chemotherapy and still have metastatic bone cancer but under control. We monitor it closely and tweak the drug combinations at the earliest signs of activity. I remain pain-free and feel quite well overall.

It has been 16 long but lucky years since that initial prognosis when I was given less than two years to live.

I am the longest known survivor of salivary duct carcinoma. I consider myself among the luckiest in the world. But, as they say, “luck is the residue of design.” It has been my eternal optimism, interminable hope, invincible determination and the support of my loving family that have carried me through this incredible journey. And, of course, being a physician was most fortunate.
The fight must go on.

I appreciate the opportunity to share this brief summary of my very long journey. To learn full details of this amazing story, please read my book, Swimming Upstream, which is available at Amazon.com.