A New Chapter: Navigating My Ovarian Cancer Diagnosis

Recently I had the opportunity to attend the Snowflake Summit in San Francisco. It was an extraordinary and memorable trip, filled with numerous opportunities to connect with customers, partners and colleagues from across the globe.

However, during the flight back, I noticed something felt off. With plenty of time to kill during the journey home, I did some Googling to understand what might be causing this. Almost every article I read urged immediate medical attention  Uncharacteristically, I heeded the advice and contacted a GP straight away.

The GP, recognising the urgency, referred me to a gynaecologist. The gynaecologist quickly ordered a series of tests: an ultrasound, a blood test, an MRI scan, and then a CT scan. The results led to an immediate referral to an oncologist, who promptly scheduled me for surgery.

Within two weeks of landing from San Francisco, I went under the knife. The original plan to perform a robotic surgery was abandoned, replaced by an open surgery leaving me with an unsightly 10 inch vertical scar running down my abdomen, but this quickly became the least of my worries. The diagnosis was ovarian cancer stage 3B. 

In the meantime, I frantically started researching in order to educate myself about the predicament that I found myself in. Various articles gave me a prognosis of survival rate between 25-41%. As if this is not depressing enough, it has a 70-90% recurrence rate.

Here are a few other things that I have learned:

• Women (like me) who do not have a child or delay having children or women who never breastfeed will have higher ovarian cancer risk. This seems so unfair, as for a lot of women, this is not necessarily by choice
• Survival rate for stage 1 is almost 95%, for stage 2 it is almost 70%, and it worsens considerably with 25% for stage 3 and 15% for stage 4. Sadly ovarian cancer is a type of cancer that is the hardest to detect early, as the symptoms are so common and can be mistaken with so many other conditions, and this disease is normally discovered really late, therefore giving the poor prognosis
• Women in menopause often accept unexplainable weight gain, and expanding waistline as the norm, in fact ovarian cancer happens most often to women who are postmenopausal

The slightly good news is that there is a simple blood test that can be done relatively cheaply that can give a good indication if your risk is heightened. CA-125 test is a test that measures the amount of a protein called CA-125 (cancer antigen 125) in a sample of your blood. CA-125 is a type of tumour marker. Higher  levels of CA-125 are often found in people who have ovarian cancer. The normal range for this marker is between 0 and 35 U/mL. In some patients this can be very high (e.g. 2000), but in my case, it was only slightly raised at 74.

With what I know now, I was dismayed that this inexpensive test is not simply offered, as a heightened result can possibly be an early indicator of ovarian or cervical cancer. I would encourage you to get your CA-125 level tested regularly. If your doctor or health provider does not offer this, you can get a home test kit. In the UK, this test costs less than £25. Please see your doctor straight away if your level is elevated. Ovarian cancer grows quickly and can progress from early stages to advanced within a year. With the most common form, malignant epithelial carcinoma, the cancer cells can grow out of control quickly and spread in weeks or months

Now, ready or not, I find myself in a conveyor belt where a series of tests and treatments were lined up for me, including a gruelling series of chemo with an endless list of side effects, which include some that are irreversible if one is unlucky enough to get them. These include hearing loss, tinnitus, as well as peripheral neuropathy (nerve damage on your hands and feet).

In addition to that, whilst I am in a good frame of mind this time around, the high rate of recurrence really bothers me. Why would it keep coming back? It turns out that chemotherapy drugs are effective in killing the fast-dividing cancer cells, but not the cancer stem cells which possess DNA repair mechanisms that allow them to resist chemotherapy. When tumour cells die during chemotherapy, they release signalling proteins that may stimulate the surviving stem cells to reproduce and differentiate into a new tumour. This means when the cancer returns, it will return with higher resistance to drugs that make them harder and harder to contain.

Upon my research in reading numerous articles on the internet, with a lot of conflicting advice, I stumbled upon 2 books that strike a chord with me.

• Starve Your Cancer by Jane McLelland
• The Metabolic Approach to Cancer by Jess Higgins Kelley and Nasha Winters

Both books and additional articles I have read convince me that alongside the “traditional” chemotherapy, I need to do something more to curb the stem cells. Although I have no medical background and might be seen as naive or desperate, this approach makes sense to me.

The books have taught me that I need to do more than just rely on standard chemotherapy which will only deal with one aspect of the cancer, the rapid-dividing cells. To eradicate cancer, or keep it at bay for as long as possible, I need to do a multi-prong attack, by starving stem cancer cells from the 3 fuel sources that they need to survive: glucose, glutamine (a type of amino acid, a building block of protein) and lipids (a fatty compound). Relying on a mainstream chemotherapy is not going to be enough. Having witnessed my own mother struggling with multiple recurrences of her cancer, I am determined to do everything I can to avoid that fate for myself.

Given the limited time I had to digest all the available information amid hospital visits and the fatigue from recent surgery, I adopted a rather stringent diet—a plant-based, low-GI regimen while cutting out all sugar—to err on the side of caution. While I understand that this approach is not sustainable in the long run, I have also incorporated some supplements into my daily routine. But to effectively cut off the cancer's fuel supply without depriving my already weakened body, I need to address other fuel sources as well. For this, I require additional medications or treatments that are not currently available to me, such as:

• Metformin - is only prescribed for patients with diabetes, but key to cut off cancer’s supply of glucose and insulin and reduces IGF-1
• Statins - only prescribed for patients with high cholesterol level, can help cut protein supply for cancer

Basically there are numerous cheap drugs out there in the market that are labelled to be used for other purposes (like diabetes, heart disease, high cholesterol) that can immensely help cancer patients in cutting off cancer’s various fuel lines, and can help beyond diet and supplements. These drugs are considered “off-label”, since they were developed for conditions other than cancer. The difficulty is to convince mainstream medics to prescribe this to me. They simply wouldn’t, citing there has not been a large scale study to support this. But a large scale study can take 10-15 years to complete, a luxury of time that most cancer patients do not have. 

Right now, I’m using every last bit of energy I have, along with my analytical skills, to sift through all the information available, distinguishing between what might be false or outdated, to develop my own multi-pronged attack plan. The stakes are incredibly high—if I get this wrong, it won’t just mean a delayed go-live like in an IT project; it will be a matter of fighting for my life.

In the meantime, my employer Snowflake has been more than supportive. I can not ask for anything more, and I will be forever grateful for their support. Friends and colleagues have rallied with endless support, messages of encouragement and love. Some simply came to my house to keep me company while working. They, you, simply give me courage, strength and hope.

My chemotherapy will start next week. I have restyled my hair short, I have chosen a couple of wigs, I am in a great frame of mind. Let’s do this!