Mom passed away late March, about a year and five months after she was diagnosed with neuroendocrine tumours (NET). This is a rare form of cancer, the kind that took away actor Irrfan Khan far too soon. Mom was only 66. That is way too young for me, as I have taught senior citizens well in their 80s.
A cancer diagnosis is never easy despite advancements in medical science like nuclear medicine (PRRT) whose side effects are supposedly less than conventional chemotherapy, radiation, or other medication options (everolimus, cabozantinib). I still recall Fall 2024 when at the behest of our retired family doctor we obtained Mom’s ultrasound results, which took us through a rollercoaster ride. In what follows, I would like to share what I learned with others, who may find themselves in a similar predicament.
- Cancer is a rich person’s disease
I have barely lived 5 years in Lahore. The bulk of my life has been spent abroad. I earn in dollars, which confers upon me some privilege. Though, not everybody earns like Pakistani American medical doctors and entrepreneurs. And cancer is a rich person’s disease.
Mom never wanted to move in with me as her social circle in Lahore kept her close to family and friends. Lahore’s premier cancer hospital refused her case citing her advanced diagnosis and age. Given their limited resources, it is understandable that they reserve treatment for younger more promising cases. Thankfully, between my modest savings, my friend Rob’s help, and extra workload, I was able to afford private care. I cannot even imagine how those without means cope with such a rare disease.
Too often an individual is made a scapegoat when the blame should rest on a system that fails to train them effectively or that prizes profits over patient wellbeing
NET patients require monthly octreotide shots. When administered through private clinics, the cost easily translates to PKR 100,000 per shot. Including regular ultrasounds, blood work, oncologist consulting fees, medications, and all, I was budgeting a minimum of PKR 200,000 for ongoing treatment. As the cancer progressed, the frequency of these shots had to be increased from every 28 days to every 21 days.
- Steep Learning Curve
My sister put her career on hold to emerge as Mom’s primary caregiver. She, my baby sister, and I braced ourselves for Stage IV NET - a marathon of slow decay. This was about our Queen Bee around whom our worlds revolved. We did our homework. My sister sought multiple consultations from local oncologists for second and third opinions.
I joined a couple of online groups on NET Cancer. The best resource support arrived from Lisa Yen and Heather Davis, whose own loved ones were diagnosed with NET. Their videos on some successful stories of patients inspired hope. Lisa and Heather would send detailed emails in response to my queries. Heather and I had a heartfelt hour long talk after Mom’s passing. I am ever grateful to both.
However, the situation seemed grim in Lahore, where we have capable oncologists but not NET specialists. We had to make do within our resource constraints. Sometimes there was conflict of information, and we had to wade through a plethora of information. For instance, we debated whether Mom should forgo broiler chicken. On the one hand was the issue of adequate protein consumption, on the other hand, we worried about hormone infused products. The ingredient list of protein powders including sugars or artificial sweeteners was another issue.
As the disease progressed, such issues became moot and we just wanted Mom to eat something. I was concerned about loss of muscle mass and wasting away. Our beautiful plump Mom was reduced to a bag of bones within a year. Should I have aggressively pushed for more protein intake in the initial stages has now become part of the “what if” questions that haunt me at times.
Through Mom’s journey, I kept using google AI, searching for options and side effects. Sometimes, too much information can paralyze decision making. There are also unforeseen outcomes, which jostle one terribly. I still question not stopping the chemo pill (Xeloda), sooner or going with the second cycle of PRRT, which was followed by Mom’s eventual deterioration. The point is that the learning curve for a rare disease on which oncologists themselves are learning can be quite steep.
- Opportunistic Behaviour
NET patients have several options if the primary treatment with monthly octreotide shots fails to arrest tumour growth. Amongst the most promising is PRRT. Yet, finding that option was an uphill task. Local oncologists did not provide us with that option upfront. We pursued it based on our homework. We contacted IRNUM in Peshawar and NORI in Islamabad, as Lahore options were initially unavailable.
Shaukat Khanum offered the German version at PKR 1.6 million per dose, way beyond my reach. Eventually, we found the Pakistani equivalent at INMOL at PKR 200,000 per dose. In the US, this option is available for NET patients, but we had to go through an anxiety inducing process to finally procure some hope for Mom.
I still question why this option is not readily available in Lahore and is discovered only after jumping through hoops. I question the potential opportunistic behaviour in selling the German version over the Pakistani equivalent, even though Pakistan is a nuclear power, not Germany. In retrospect, I also question the shortage of monthly octreotide shots that pushed us scrambling for daily equivalents, which only expose frail patients to more needles.
- Systemic Accountability
To err is human. I am also not a fan of a culture of lawsuits that drains one of energy and time. Yet, as patients in the US have their legitimate concerns, we have our own set of grievances. These include the female nurse who was rough with Mom’s PRRT administration. Apparently, the staff was fearful of being exposed to radioactive medicine and were not properly trained. Additionally, I question if we were adequately prepared for side effects (carcinoid crisis; ascites complications) and best practices (dosage calibration) with PRRT.
When Mom’s condition worsened, my sister rushed Mom to an ICU where needless tests were undertaken in a system that is based on a money minting model instead of what is in the best interest of the patient. This is why I feel that there needs to be systemic accountability. Too often an individual is made a scapegoat when the blame should rest on a system that fails to train them effectively or that prizes profits over patient wellbeing.
On the other hand, we felt blessed to have access to capable oncologists who prepared us mentally on the eventual outcome for NET patients. A male nurse arrived in our lives as an angel. Mom deemed him as her son. Imbued with the beauty of the Christian faith and a life based on service, he was gentler than some female nurses with vaccines and IVs. When Mom’s body became a bag of bones and every single injection hurt, he told us about numbing creams. He guided us with a morphine equivalent that reduced her pain through sedation.
- Quality of Life
Unlike the Middle East or the West, we were fortunate that my sister was able to get Mom discharged from the ICU to spend her last days at home. We set up hospice care at home with a proper bed, air mattress, IV stand, oxygen cylinders, various medications, monitoring machine, and 24/7 nurses round the clock with 12-hour shifts each. This was our Queen Bee getting ready for her final flight. And we were giving it our all.
It would only be a week before our loving Mom succumbed to NET surrounded by her family. She had fits in the last couple of days. Her family would recite the Qur’an around her and the Islamic testimonial repeatedly before she left. What else do people have but faith in the most trying of times.
Our trial came to an end late March. We remain extremely saddened as she was full of life and until her last hoped to get better. She continued to retain excessive optimism. I remain in awe of how much she endured. Yet, we are relieved that her suffering came to an end sooner than later. I recall sharing with my sister that less time without pain trumps more time with pain. Quality of life is everything.
Overall, if I am to encapsulate what I learned, I would share that people seek multiple opinions and options before making decisions which can be irreversible. I would recommend the creation of “visible” support groups where local patients can share their stories, draw support from one another even if it’s just the idea that they are not alone. They can coordinate with groups like those by Lisa Yen and Heather Davis. Hospital staff can share best practices especially in the age of information on our fingertips.
I would suggest support for oncologists to pair up with foreign experts in their multiple trips abroad to regularly discuss patient files with them. They can even coordinate the latest trials for patients willing to be part of such studies. For rare diseases like NET, no single expert knows it all and they should feel no hesitation in seeking counsel. They should also assign junior doctors to frequently follow up on patient wellbeing. I also wish some doctor had prepared us with morphine and calming drugs to address fits beforehand.
Personally, instead of excessive optimism, I wonder if I should have prepared Mom mentally to let go. Unlike many, I am partial to Dying with Dignity options available in Western economies. I believe that the right to life should not become a duty to suffer. But that’s just me and I wish not to encroach on anyone’s faith including that of my late Mom. May her kind teachings live through me and my sisters.