Getting Diagnosed With a Rare Tumour: Episode 2
"Mrs Rejoyce Thacker?" Dr Burman calls. Dressed in a deep navy blue suit and wearing the brightest smile in the room, you wouldn't think he was a doctor. But he is. And apparently one of the best.
Though I'd been anxiously waiting for this moment for hours, it's felt like days. My doctor found an unusual mass on my pancreas. Puzzled by what it is, he referred my case to one of London's top medical boards for pancreatic cancer, a team which Dr Burman created.
"Yes, that's me!" I smiled. My husband and parents cleared their work schedules to come to this last minute arranged appointment. We rose out of the brown leather chairs at reception and nervously made our way into his office.
"Please, take a seat," he said.
"Your latest MRI scan shows the lump on your pancreas is 8.8cm by 7.2cm by 6.8cm," Dr Burman begins. "It's roughly the size of your kidney which is a bit bigger than a tennis ball."
He brings up the scans on his monitor and begins to explain what he can see. "This blob right here is what we're concerned about. It's putting pressure on your liver, stomach and major blood vessels."
Wanting to get straight to the point, I ask "What do you think it is?"
Dr Burman responds, "I believe you have a pseudopapillary tumour of the pancreas."
"It's a rare benign tumour. So rare, I estimate there's a one in a million chance anyone can get it. Strangely, those affected are typically exclusively young, healthy women in their 20s and 30s. We don't yet understand the cause."
Hearing the word benign, my mother released a loud sigh of relief. Knowing pancreatic cancer has a survival rate of less than 1%, she prayed I had anything but that.
"It's possible our diagnosis is wrong and you have pancreatic cancer itself. But in someone as young and healthy as you, it should be very unlikely you have cancer." Dr Burman cautioned.
This moment of being diagnosed with a tumour is what I've dreaded, had nightmares about and hoped would never happen to me. Yet hearing the diagnosis made me feel relieved. Really relieved.
You see, for the past three years, I've had symptoms that every GP and A&E doctor I've seen has brushed off as nothing. As a 26-year-old former athlete turned health coach, they all assumed I'm too young and fit to have health problems and didn't investigate further. My GP even went as far as refusing to give me a referral to see a specialist, not once but twice because of my age.
If it wasn't for my mother and husband, we wouldn't have sought a private doctor who had the time and resources to spot this tumour early.
"So how do you treat it?" I ask.
Dr Burman warned, "Here's the complication. Your tumour is pressing against your aorta and major blood vessels. If your tumour keeps growing, which it will, it could stop the blood flow to your organs. When that happens, your organs would die and ... we wouldn't be able save you."
"And if our diagnosis is correct, while we believe the tumour is benign... there's a 10% chance it will transform into cancer (at any time). There's no way of preventing that from happening. The longer you keep the tumor in, the higher your risks. It's therefore our recommendation, you do a surgery to remove it " Dr Burman concludes.
Dreading the idea of going under the knife, I ask "Do I have any other options?"
Dr Burman looks firmly at me, shakes his head and exhales, "No. There's no evidence of this tumor regressing or going away on it's own or with any other treatment. Surgery is your only option."
I started to freeze and feel numb.
"This is a major surgery that will take about 5-8 hours. To remove the tumour, we'll have to cut out half of your pancreas, your gall bladder and a bit of your stomach, bile duct and duodenum and re plumb your digestive system. After surgery, you'll be in intensive care for two days. Once you can breathe on your own and you're stable, you'll stay in our hospital ward for an additional 12 days. Recovery is quite slow, so we usually advise patients to take two months off work. It can take at least 6 weeks for you to return to your usual activities." he says.
As he talks through the surgery, my anxiety over being cut open to remove some of my organs to prevent myself from dying from blocked blood vessels or cancer kicks in. My head gets flooded with confusion while my stomach ties in knots. I feel nauseous. How on earth did I get here? Why on earth is this happening to me?
Over the past few years, I've done almost everything wellness experts claim will lower your chances of getting sick.
I cook all organic, gluten free, dairy free and sugar free meals
I even eat vegan recipes every week
I always start the day with a green smoothie
I consistently workout five times a week
I only drink filtered water
I don't drink alcohol
I've never smoked
And I love my 8 hours a night beauty sleep
The worst crime I've committed to my body is binge-ing on 2 portions of fries and 5 pieces of fried chicken from KFC on a Saturday night. Everyone's allowed a "cheat meal" right?
I never thought this would happen to me... but it is. And it's happening at what feels like the worst time.
My husband and I recently got married and we moved into our new home a couple weeks ago. We were planning to try for a baby this year and we thought this would be the perfect place to start our family. Just five months ago, I launched my health coaching business and invested all my savings into it. I guess all of our baby and business plans will have to be put on hold.
Why this is happening to me, I'll never know. But one thing I do know for sure is that it's pointless getting sad or frustrated about it. Because while this tumor could be the worst thing that's ever happened to me, it may just be one of the best things I've ever been blessed with.
If it wasn't for the tumor, I wouldn't have learned that I'm human. Really human.
Humans are mortal. We are not invincible. We are not guaranteed a future.
I wouldn't have truly understood that there is no guarantee I'll live a long life. Yesterday, I thought I was like every other woman my age. I assumed I'd live as long as my parents, if not longer. So I saw no harm in putting things off, whether it'd be following my career dreams, going on a romantic date with my husband, delaying having children, or waiting for the perfect time to go on vacation.
Today, I've learned it's pointless living like you have 20 or 30 or even 60 years ahead of you, if you can't even guarantee you'll live for the next five years.
Thanks to the tumor, I've decided to live my life and spend each day as though my time is limited. Because it is... for every single one of us. We just don't know it yet.
The first thing on my bucket list is to survive the surgery... beat the tumor.
All I have as I begin this journey is hope, gratitude and appreciation for all the people around me. I'm grateful for the surgeon for catching the tumor. Many people don't catch it until it's too late and my other doctors certainly missed it. I'm grateful for my mother for pushing me to see a specialist. I'm grateful for my husband for loving me and providing me with private medical care through his work. I'm grateful for the people at church for praying for me. I'm grateful for my friends, everyone in my family, and all our family friends that have wished me well.
My surgery is tomorrow (May 26th 2017).
In the next episode (i.e. next blog post) I'll let you know how the surgery goes. Will there be any complications? Will he be able to remove all of the tumor? Will there be no trace of a cancer cell in my body?
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This is the story of my life, and you're reading it as it happens.