By Alyce Collins
THIS WOMAN felt like her surgeon WASN’T PAYING ATTENTION after she discovered the brain tumour he removed had been RE-GROWING for almost TWO YEARS – even though she had been having regular MRI scans and check-ups with him.
Marketing director for a yacht company Kelsey Parigian Taveira (33) originally from California, Redondo Beach, USA, who now lives in Portimao, Portugal, with her husband Philip (39), suffered a seizure and collapsed in a restaurant in January 2016 before being rushed to hospital where doctors located a large mass on her brain.
A lemon-sized tumour had grown on the right side of Kelsey’s brain and it was suggested that Kelsey undergo surgery just three days later to remove it. When it was removed, the tumour was biopsied and diagnosed as stage two oligodendroglioma, a rare type of brain tumour. Kelsey spent 11 days in hospital recovering from surgery but was told she didn’t need to go through with any chemotherapy or radiation because all the cancer had been removed.
Although she attended MRI scans every three months, Kelsey was told that she didn’t need to amend her lifestyle in any way and that her scans were repeatedly coming back free of any tumour regrowth.
In November 2017, at an MRI scan, her oncologist revealed that Kelsey’s tumour had returned. Kelsey was incredibly shocked as she had repeatedly been told her scans were clear, so before going ahead with surgery or treatments, she sought the opinions of other doctors. Unfortunately, Kelsey wasn’t expecting to be told that her scans had shown tumour regrowth for almost the entire two years, but it wasn’t noticed by the radiologists who ‘weren’t paying attention’.
As the tumour had been growing unnoticed for so long, Kelsey had a second surgery to remove it in January 2018, two years after her first tumour was removed. Once it had been removed, the second tumour, which was larger than the first, was biopsied and found to be a different type of tumour – a grade three anaplastic astrocytoma. Kelsey then learned that she would need chemotherapy and radiation to prevent the tumour from returning.
“I didn’t have any symptoms that made me think I had a brain tumour, but when I look back, I definitely had symptoms of a brain tumour,” said Kelsey.
“When I was a university student, I had migraines frequently and I had anxiety attacks, I mean really bad anxiety attacks to the point where I went to the hospital thinking I was going to die.
“In my early twenties, the doctors always said I was stressed, that it was depression and anxiety and they just wanted to give me every pill possible, but I never had an MRI.
“I had headaches my entire life, then in 2016, I went out with my friend in Venice, California and I started feeling dizzy and nauseous. I thought I was having a panic attack, so I got up to get some air and when I stood up, I collapsed and had a seizure in the middle of the restaurant.
“I was rushed to UCLA hospital in an ambulance and they did an MRI and came in and told me I had a mass growing on my brain. My instant reaction was to ask, ‘what does that even mean?’.
“I had a tumour on the right side of my brain, and they suggested I have surgery within three days. It was a grade two oligodendroglioma and it was the size of a large lemon.
“The surgeon was very confident, and he told me that everything had been removed so I could go live my life and I’d be alright. He sent me to see an oncologist and then from January 2016 until November 2017, I had regular oncology appointments and was continually told that everything was fine.”
A second tumour was found in November 2017 which was removed through the same surgical site as the first tumour. After finding out that the radiologists had failed to notice the tumour recurrence, Kelsey was shocked at their lack of attention as reviews of her MRIs showed visible tumour regrowth throughout the months.
Kelsey underwent six months of Temodar chemotherapy from March 2018 to October 2018, and she tried to keep herself busy, even starting her blog to raise awareness for other patietns with brain tumours. In addition to her treatment, Kelsey started using holistic remedies to help her recovery, including reiki, acupuncture and a ketogenic diet.
“Two years later, in November 2017 I had my routine MRI and the doctor came in with this look on his face that was different, so I asked what was wrong and he said I had tumour regrowth,” said Kelsey.
“I was shocked because I had been going in every three months for two years thinking everything was fine but then he said they thought I should go forward with chemotherapy and radiation. So, at that point I went and got multiple opinions, and other doctors said there was no way chemotherapy and radiation would help enough as I could end up nearly brain dead if the tumour kept growing. I needed another surgery as it was bigger than my initial tumour.
“I couldn’t believe it. I felt that the surgeon and the oncologist weren’t paying attention. All these other doctors asked how they hadn’t seen the tumour growing for the last two years. It can be seen growing in every single MRI I had!
“After surgery, they did a biopsy and the tumour had changed to an anaplastic astrocytoma, and the grade had gone from a two to a three. My neurosurgeon was able to use some of the incision from my first surgery, but she had to cut a larger area in the back of my head.
“After the first surgery, they acted like I was fine and told me it wouldn’t return. So, it never hit me that it was cancer at the time. But I definitely should have had chemotherapy and radiation after the first surgery, but they didn’t treat me properly.
“Once all this happened to me again, I started researching how I could change my lifestyle and prevent this tumour from growing back again. I learned that I could help hinder growth through diet and holistic health. If I’d have known that information the first time, I would have done more, and maybe there wouldn’t have been a second tumour, but it was too late now.
“The second tumour was growing the entire time, and because I didn’t know, I didn’t look into any alternative medicine. As I was unaware of it, I was eating sugary foods, drinking and doing everything that a normal 30-year-old would do. There’s so much you can do on top of just relying on your doctor. You can’t always trust them – I trusted mine and look what happened to me.
“I started chemotherapy in March 2018 and then the radiation was for six weeks alongside chemotherapy. So, I finished chemotherapy last October.
“During treatment, I stuck to the ketogenic diet and I tried other therapies, like reiki and acupuncture and I went to the gym every day after radiation. I had more energy going through treatment than I do sometimes now! I felt that keeping myself busy was an important factor to helping me feel better.
“The response to my blog was so positive. I didn’t really know what to expect, but I also thought that everyone would be curious how surgery went, how treatment went and how I’m doing. So, I just thought it would be easier to put it out there and share it with the world.
“Brain cancer is not a death sentence, and people need to realise that. So many doctors will tell you that you might only have a year left, but it’s so wrong. There are so many things you can do to keep yourself mentally and physically positive.
“I get so mad when people tell me they had the same cancer as me, and they were given six months to live. How dare these doctors tell their patients what their life span is. I want to put it out there that there are many other things you can do to help your prognosis, and there are people living well beyond what they’re told they have left.
“My first oncologist told me I had about nine years, but the oncologist I work with now is very confident and tells me I will be fine as I am on so many more treatments.”