My Brother Died of Brain Cancer. 20 Years Later, I Had It, Too.

It was the afternoon of Jan. 31. I was preparing for a dinner party and adding final touches to my cheese platter when everything suddenly went dark.

I woke up feeling baffled in a hospital bed. My husband filled me in: Apparently, I had suffered a massive seizure a few hours before our guests were to arrive at our Manhattan apartment. Our children’s nanny found me and I was rushed to the hospital. That had been three days earlier.

My husband and I were both mystified: I was 37 years old and had always been in excellent health. In due course, a surgeon dropped by and told me I had a glioma, a type of brain tumor. It was relatively huge but operable. I felt sick to my stomach.

Two weeks later, I was getting wheeled to the operating theater. I wouldn’t know the pathology until much later. I said my goodbyes to everyone — most importantly to my children, Sofia, 6, and Nyle, 2 — and prepared to die.

But right before the surgery, in a very drugged state, I asked the surgeon to please get photos of me and my brother from my husband. I wanted the surgeon to see them.

My brother had died two decades earlier from a different kind of brain tumor — a glioblastoma. I was 15 at the time, and he was 18. He died within two years of being diagnosed.

Those two years were the worst period of my life. Doctors in my home country of Pakistan refused to take him, saying his case was fatal. So, my parents gathered their savings and flew him to Britain, where he was able to get a biopsy (his tumor was in an inoperable location) and radiation. Afterward, we had to ask people for donations so he could get the gamma knife treatment in Singapore that my parents felt confident would save him. In the end, nothing worked, and he died, taking 18 years of memories with him.

After my brother’s death, I threw myself into my school work. It was partly to escape the depression that enveloped my house and partly to make something good of the rest of my life. I worked hard — hard enough to land at an Ivy League school (with full financial aid). I graduated with a dual degree in engineering and economics and worked as an investment banker, an investment manager and finally director of economic research at a family investment office. In the middle of it all, I got married and had children.

It was an immigrant’s dream. Until it came crashing down.

The period after my surgery is a blurry haze. I was grateful that I did not die, but I lost all my speech and most of my memories for a few days. I didn’t remember where I lived or what was happening to me. Later, I couldn’t remember how to use a credit card or where basic utensils in my home were. I would watch TV forgetting to turn on the volume — trying desperately hard to make sense of what was happening.

The pathology report arrived a few days later showing a low grade oligodendroglioma. I had been given a second chance! I had a highly treatable, even if not curable, tumor.

Oligodendrogliomas account for only 4 percent of all primary brain tumors, and, in younger patients, have a survival rate of 90 percent over five years. In contrast, a glioblastoma, the kind my brother had, is the most common and aggressive tumor, accounting for just over half of all primary brain tumors, with a median survival rate of only 12 to 18 months.

Despite the relief that came with the positive news, I’m still looking at a year’s worth of treatment with both radiation and chemotherapy. The radiation will be likely to have an adverse long-term impact on my cognitive skills. But if it’s a choice between that or more years of life, the decision is easy, especially if you have young children.

The irony is that for much of my adult life, since my brother died, I kept asking doctors to check my head for any signs of brain tumors, given my family history. Everyone told me the same thing: They are not hereditary. While I wondered if there could have been something environmental that my brother and I were exposed to, I was more worried about it being genetic. I grew up in a joint family system with both my parents, grandmother, uncles, aunts, and lots of young cousins — none of whom have it (even though they were exposed to the same environment).

Before my diagnosis, I once showed up at a doctor’s office specifically asking her to do an M.R.I., but she refused and told me kindly that tumors don’t run in families. Later, after my seizure, I confronted several neuro-oncologists, asking if they would have screened me before my diagnosis. But they all told me that they would not screen patients for brain tumors unless they were symptomatic.

Medical research is on their side. It shows there’s only a 5 percent chance of brain tumors being hereditary. My brother was the first among our eight uncles and aunts and 19 cousins, and now I’m the second.

On my insistence, the doctor ran a genetic test, checking for mutations to see if I’m predisposed to having a brain tumor. It came out negative, showing no correlation to my brother’s disease. But the doctor admitted gaps in his understanding. He had treated a man with glioblastoma, for example, whose two children had it too, and the genetic report turned out negative. “Ask me in 10 years, and I might have a different answer,” he said.

Everyone keeps telling me to be grateful. That I haven’t suffered the same fate as my brother. That I have had two extra decades of health to live and enjoy. As my husband puts it, “You’re the luckiest among the unlucky.”

In a quote attributed to the famous Sufi poet Rumi, “If you only say one prayer in a day, make it thank you.” I can’t explain why I get to live longer than my brother. Or why I got to enjoy two more decades than he did.

But for that and everything else, thank you.

Sundas Hashmi is a writer who formerly worked in finance and public policy.

Source: nytimes.com

Tags: health

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