I first heard of Andrew Scarborough’s battle with brain cancer through social media in 2014 so I was excited to meet him in person at the ketogenic diet and metabolic therapies this past Feb. Today I am privileged to share his story.
In 2012 Andrew was a fit 27 year old completing a master’s degree in nutrition and training intensely in the gym. He was working long hours in school competing in biathlons, eating lots of carbs, as per the fitness nutrition advice, and achieving personal bests.
In spite of his athletic and intellectual gains, Andrew was feeling unwell. He had had increasing migraines and had seen the doctor on several occasions. The “horrific” headaches were ascribed to stress. Andrew shared with me that he had a history of eating disorders and that he had wondered at the time if what he was experiencing was a loss of electrolytes which had been a problem in the past. It seemed to fit, given how busy his schedule was and how much time he was training. Throughout 2012 Andrew had noticed some other “strange” symptoms he was unaccustomed to. He had been having dizzy spells and had been more forgetful and in hindsight he thought he may have been having partial seizures as well.
“I didn't know that I was having seizures. My cousin has epilepsy but she never talks about it so I didn't know anything. I had the idea that epilepsy was just people looking at flashing lights and then rolling around on the floor. I didn't know there were so many types of seizures”.
The headaches continued to get worse. “Crushing” and “debilitating” were the words Andrew used to describe the pain. For the first time in his life he found himself using NSAID’s (non-steroidal anti-inflammatories) to try to help alleviate the pain - which didn’t work.
One April morning Andrew boarded the London Waterloo to Reading train with a blinding headache. A short while later the train would be forced to make an emergency stop when the blood vessels surrounding the growing tumour in his brain ruptured.
“It was horrific; the hemorrhage was life-threatening. I was lucky to survive. I was lucky there was a doctor in the carriage.”
Andrew was at first given the diagnosis of an AVM (Arterial Venous Malformation). These can be life threatening if they rupture. However, it wasn’t long before they changed the diagnosis to a cavernous hemangioma - a less life-threatening cluster of abnormal blood vessels.
“When I got this [second] diagnosis I was very happy because I had felt that there was something wrong with my brain for years because I had had terrible depression that I had dealt with through exercise and behaviour modification therapy. So my first feeling was of relief”.
Then the grand mal seizures began. It was May 2013.
“A lot of people don't realize that epilepsy can kill you . My seizures were one after the other in clusters which would last a long time. My first one was about an hour. Now I feel quite glad I have no cognitive deficits from that. It was a difficult time.”
At this point in our interview I found myself thinking about how terrifying this must have been to live through and I was impressed by the positive approach Andrew had to his disease.
Andrew was put on Anti-Epileptic Drugs (AED’s) and one month later had an operation to remove his cavernous hemangioma. Six weeks later he would receive a phone call telling him that they had actually removed a vascular tumour and that he had a rare and highly malignant form of cancer, anaplastic astrocytoma. His doctors didn’t even know how to classify it.
Andrew told me he was “paralyzed with fear.” He had heard about the Ketogenic Diet while studying nutrition and I asked him how long it took him after the terrifying phone call for him to consider trying it. His response came without hesitation and with a wry laugh, “It was about an hour later when I was crying and thinking I was going to die.” He made it clear that in the beginning he was not trying Keto to try and treat the cancer. He was still skeptical about that. It was more to reduce the frequent and debilitating seizures. “I couldn’t go out; my movement was compromised due to the brain haemorrhage so it was like recovering from stroke. I had to sleep a lot of the time because when you're recovering from seizures you feel very tired; after a seizure I felt as if I had run a marathon without any of the benefits.” He laughed again and I was struck by his good humour in the face of such adversity.
It did not take long for his skepticism about the ketogenic diet to wane as he read more. He soon became convinced of the therapeutic application of the diet when battling cancer. Early on, Andrew’s choice of managing his situation with a ketogenic diet was met with disdain by his radiation oncologist. Chemotherapy had been ordered and was not having a positive effect on Andrew or on his cancer. His own research had discovered that his type of tumor was rarely responsive to chemotherapy, so when the solution offered was more chemotherapy he looked for an alternative. He contacted the Matthew Foundation , which put him in touch with Charing Cross Hospital where he met his current oncologist, Dr. Kevin O’Neil, who was interested in metabolic therapies for cancer. He was, and continues to be very supportive of Andrew’s choices. He and Andrew share a passion for encouraging others to try these potentially lifesaving approaches together with current therapy. There is emerging evidence to suggest that the ketogenic diet and hyperbaric oxygen therapy seem to enhance standard cancer treatment such as radiation and chemotherapy and improve outcomes.
Andrews’s diet began as a fairly common 3:1 ratio with about 20 grams of Net Carbs a day and about 75% fat. The Matthew Foundation helped him figure out his ratios and find a “happy ketone zone”, which for him was between 3-5 mmol with quite low blood sugar, often under 3.0 mmol (55 mg/dl).
Eventually he chose to wean off the AED’s, due to the awful side effects. He then brought his fats up to 85-90% (this is the 4:1 ratio that many epilepsy sufferers start with and which usually decreases seizure frequency). However, he began having visual disturbances, blacking out, and he felt worse. Andrew very well might have given up at this point - but he didn’t. He persevered. His analytical mind took over and he theorized that the symptoms he was having were an inflammatory response which he found “interesting” as the ketogenic diet is inherently anti-inflammatory. He looked to his food journals (which he feels strongly everyone should keep) and he saw a clear pattern of food sensitivities.
Andrew worked out that he was in fact allergic to many typical keto foods such as coconut oil, avocado, broccoli, and cauliflower. Because of his diligent tracking he was able to discover the correlation and remove the offending foods, seeing a complete reversal of his symptoms as a result. Over time, he also figured out that his omega 3:6 ratios were off. Due to eating lots of almond flour etc., he was getting too much Omega 6 (Andrew recommends a 1:1 ratio). Once he fixed the ratio he was able to wean completely off the AED’s. It should be said that every neurologist Andrew saw strongly discouraged him from stopping his AED’s. He has now been 1.5 years off the medication and with excellent seizure control.
However, that is not all.
Andrew says that is ironic that a very regimented way of eating has helped him reverse a sugar addiction, an eating disorder and the depression which plagued him in his youth. He is quick to add that he still has down days now and then, but when he feels good he feels “really good”. He says he feels more mentally sharp as well, which is an added bonus since he is able to focus for long periods as he works on his brain tumor research at the University of Westminster in the UK.
Over time Andrew has changed his diet significantly and in the past two years he has been eating truly zero carb. So, I asked him, what does his diet look like today?
“I eat more of a Paleolithic diet” he laughs “properly Paleolithic that is. I did a lot of reading into this and we used to eat lots of organ meats, and insects, and I thought that was interesting considering most people think of a Paleo diet being lots of muscle meats and vegetables. I don’t eat any plant foods. I can get the micro nutrients that I may have been deficient in by eating insects. They also help my gut microbiome because insects act as probiotics as well as pre-biotics. Did you know that there are 2000 types of edible insects and they all have different micro nutrients and they all have different medicinal purposes? I can change the micronutrients in the bugs just by changing what I feed them. So, I use bugs as drugs” and again he laughs, but I know he is absolutely serious.
So what does Andrew eat in a typical day?
“Typically I only eat one or two meals a day. I get up early and work out and then I usually eat sweetbreads, which are not baked goods.” He says this with a laugh - gone are his days of carb loading for competition. “Sweetbreads are the pancreas and thymus gland of the lamb. I have a local butcher who I'm good friends with and he gets me what I need because most people aren't interested in the bits that I want to eat. I eat raw duck eggs which are richer than eggs from hens. I also have caviar, oysters, sardines, mackerel, and lots of foods high in DHA. With brain tumours what you see is a dysregulation of lipids, very low amounts of DHA which is a long chain omega-3 fatty acid and with progressing grade the imbalance becomes even more apparent. You can change that imbalance by changing what you eat. My second meal is usually some kind of fish and I cycle organ meats as well so I might not always have sweet breads. Sometimes I might have liver or heart. I try and eat liver once a week. Sometimes kidneys but I don't really love the taste. I've actually had meatballs, literally testicles, which actually taste really nice.” I asked him if he eats any meat other than lamb. “It’s always lamb just because I like lamb.”
And the bugs? Andrew tells me he eats wax worms a few times a week depending on the supply. He gently fry’s them up over low heat or freezes them and eats them like nuts. He says he likes them like that as they taste “fatty and nutty”. He also has locusts on occasion as “they are just about the best edible insect for magnesium”.
He supplements with cod liver oil, caprylic acid and MCT oil. “I cycle those depending on how I feel. I have a type of epilepsy that's acquired from the brain injury and the haemorrhage and it's very sensitive. It's termed reflex epilepsy which means it's usually triggered by something. It's a stimulus response kind of seizure so I can easily pinpoint it to a very specific cause and usually that cause is going out of my therapeutic zone of blood ketones of 3 to 5 mmol of ketones and glucose 2.7 to 3.3 mmol” .
Andrew also fasts periodically, sometimes once a week and sometimes longer fasts every few months.
I was curious to know how things are today with regards to his tumour status. Andrew told me that his last couple of scans were the first to show no detectible disease. “I have MR spectroscopy which is a way of looking at the bioenergetics of the area where the tumour is/was and you can actually look at changes over time positively or negatively. It can show disease even when an MRI is clean. What’s happening is represented as peaks and troughs on a graph so different tumours will show different amounts of these signal changes. My particular type of tumour was quite unusual; it was showing an unusual distribution of these peaks and troughs so it's interesting to see that overtime that has changed. It has now gone to nothing - they can't see anything that's different from the normal brain tissue. My oncologist doesn't know quite what to think about it.” Andrew has compared his case with others with similar tumours and regrets to say many are not doing as well as he is. He suggests that very few patients are as compliant with the diet as he is. Andrews’s prognosis was bleak; very few people survive his grade of tumor beyond 2 years. He credits his Ketogenic Diet and hyperbaric oxygen treatment for his clean scans. The MR spectroscopy showed a big change for the better the minute he went zero carb.
When I asked him what lab work he routinely gets done, he replied that he doesn’t get much anymore, since it’s “all quite boring.” He has not changed much, so his bloodwork does not change much either. His family doctor is so impressed that he has begun to change how he manages his Type 2 diabetic patients.
I asked Andrew what one piece of advice he would have for anyone faced with a brain tumor. He was quick to say “look up Dr. Seyfreid’s glucose Ketone index which is a very useful therapeutic tool for cancer management. I would encourage people to look at their omega-3 and six ratios and I am really excited about the research on the use of true liquid aspirin which will be able to pass the blood brain barrier. They're going to make a lot of money out of that”.
Andrew is clear about one thing. His diet works for him. He reassured me that I don’t have to eat wax worms to have results. “It's about the chemistry of the diet. If you can get the chemistry right it should have a benefit. The diet changes your whole metabolism”.
As our interview drew to a close we talked about misconceptions, attitudes and barriers to understanding, and I found myself wishing I had another hour to ask him questions. The last thing we talked about was how so many people are reluctant to consider this diet seriously because it is “just food”. Andrew suggests if we called it “enteral chemistry” perhaps people would be more open to trying it. Andrew has lost many friends to this disease, young people like himself, and as a result he spends many hours a week answering frightened emails from newly diagnosed patients and spreading his vast knowledge on his website, www.braincanceroptions.com
Andrew Scarborough is a powerful knowledge broker, soft spoken and intellectual. Like those with the best scientific minds, he is constantly questioning and observing. “That’s quite interesting”, was an expression I heard often during our interview. His curiosity is obviously behind his academic success, and I for one am grateful to him for his inquisitive nature as it has given him the knowledge to help many people who are right now, as he was four years ago, paralyzed with fear.
 Anecdotally I will add that other people I have interviewed who have taken AED’s report similar food sensitivities over time.