“I moved from Singapore to Norway in 2007 to pursue a master’s degree. I fell in love with the country and ended up staying. It’s also where I met and married my husband Lars ― we had our daughter Naomi in 2014. It was a good pregnancy and birth and Lars and I were excited to start the next chapter in our lives.
Several months after having Naomi, I noticed I had lost 5kg. I didn’t think twice about it and chalked it up to the breastfeeding and being more active from having a baby. In fact, as a Singaporean girl who has spent most of her life trying to lose weight, I thought it was fantastic that I’d done it without even trying!
In January 2015, I started feeling a sharp pain in my hip. It started out quite mild but got increasingly worse. I saw a doctor who prescribed some painkillers. One day, while making up after a quarrel, Lars reached out to hug me. It was then that he felt a lump over my right collar bone. It wasn’t painful and you couldn’t even see it, only feel it.
On Googling, we realised it could be something serious. So, we went back to our doctor. He took it very seriously because he knew that when lymph nodes are not painful but swollen, it can be bad news.
The lump was sent for a biopsy and when I underwent a CT scan, it showed spots on the lungs that looked like it could be cancer. We refused to believe it though. I was a young, 30-year-old woman who had never smoked a day in my life. It’s not possible for me to get lung cancer. Didn’t that only happen to those who smoked?
"I was in complete shock... How did I go from being a healthy young woman with a baby one minute to only having six months to live the next?”
While waiting for the biopsy to come back, we were still staying positive and hoping it would be a lung infection or worst-case scenario, lymphoma. A few days later, my friend accompanied me to get my results. We were both so young and uneducated about cancer, but I was terrified at what I was about to find out.
The doctor said the words I didn’t want to hear. I had stage 4 lung cancer and it was inoperable, because it had spread to my brains and skeleton. Further research online told me that the average stage 4 lung cancer patient only had six months to live after a diagnosis.
I was in complete shock. I felt like it was an April Fool’s joke or a bad nightmare that I was unable to wake up from. How did I go from being a healthy young woman with a baby one minute to only having six months to live the next?
The doctors did more tests to find out if I had any genetic mutations that could be driving the lung cancer. They found out that I had a genetic mutation called EGFR (or epidermal growth factor receptor). This mutation is found more frequently in a distinct group of lung cancer patients ― young East Asian women who are non-smokers.
In Singapore, 60 per cent of Asian women who have lung cancer have never smoked. So, even if you eliminate smoking, you still cannot prevent the majority of lung cancer cases ― it’s something not many people know. This is a big number, yet there’s very little awareness about it.
How did Dyanne handle her diagnosis? Read on...
Many would consider terminal cancer as a death sentence, but thankfully, I am surrounded by family and friends who are amazingly supportive. I also have youth on my side and no other health problems. I have a loving husband and a young daughter who are depending on me ― I’m not ready to give up without a fight.
The fact that my cancer has a genetic mutation also made things more hopeful because I’m able to receive targeted therapy.
I initially started with a therapy called Tarceva. It has little side effects and we even saw improvements ― my tumours started shrinking. Medically speaking, patients can be on Tarceva for two years before building a resistance to it. We thought it could buy us some time until other advancements. Unfortunately, it only worked on me for five months. The tumours started growing again. It was very disappointing.
Then, I went on a pill called Tagrisso ― I take it daily and it has very low side effects. I still have my hair and I’m hoping it will work for a long time. However, we know these targeted therapies don’t last forever.
Lars decided to quit his day job as a business development manager to become a full-time lung cancer researcher and find a cure for me. He started going for conferences, made cold calls to top oncologists around the world who specialise in lung cancer and sent out a thousand emails to everyone related in the field. Through his efforts, he set up a good network of doctors who got to know my case and have been advising us.
“I have a loving husband and a young daughter who are depending on me ― I’m not ready to give up without a fight.”
Through his research, he also found an experimental treatment in Frankfurt, Germany. It’s a kind of immunotherapy that helps to wake up my immune system, so that it will fight the cancer.
We travelled to Frankfurt where they took tumour tissue and blood samples to analyse them and find all the tumour-specific mutations. Then, they made vaccines tailored to the mutations in the tumour.
Now, I travel to Frankfurt every three weeks to get the peptide vaccine and immunotherapy checkpoint inhibitors called Optido and Yervoy. The peptide vaccine is totally experimental and we hope they will work, but there’s no guarantee. So far, the results have been hopeful and luckily, the side effects are minimal.
I’ve been travelling to and from Frankfurt since July 2015 and I will have to continue doing so as long as it’s working. In Norway, I meet with my oncologist every two months to monitor my progress. That’s my course of treatment at the moment.
Up next, how a terminal cancer diagnosis turned Dyanne’s life around…
We don’t know what’s going to happen next, but I try not to think of the worst. Instead I’ve chosen to be grateful for what I have.
I keep reminding myself that this could have been worse if I was alone and single. But I have a husband who is doing everything to find a cure and a daughter who is giving me so much joy. I am so lucky that I even managed to have her in the nick of time. If I had waited, we wouldn’t even have been able to have kids. I am thankful every day that I got to be a mother.
Lars’s family has also been very supportive. His mother takes care of Naomi when I have to go to Frankfurt and they are always on call and come over whenever we need them. My sister-in-law is also trying to raise money for lung cancer research.
Being diagnosed with terminal cancer has helped all of us put life in perspective. My parents and I no longer sweat the small stuff. We don’t argue anymore and they have started coming down more often for visits. When they do, we enjoy every moment.
Lars and I also started A Lung Life, a blog, where we post weekly updates on how I’m doing, my therapies, any advancements in the medical field, plus our efforts to push for change. We want to use this blog as a platform to create more awareness of lung cancer and remove the stigma that it’s only caused by smoking.
“I’m only human, so I do worry about the cancer growing bigger and eventually taking me away from Naomi.”
Although there are days when I wake up and think, “How did I get lung cancer?”, the initial shock has worn off after almost two years. But I’m only human, so I do worry about the cancer growing bigger and eventually taking me away from Naomi.
Before we found out about the cancer, Lars and I were planning to have two or three kids. But now we know that she will probably be the only child, so we are less strict with Naomi over certain things. For example, if Naomi wants to sleep in our bed in the middle of the night, I let her. We would not have allowed it if we’d had three kids!
Upon a child psychologist’s advice, we broke the news of my condition to Naomi some months back. We were told to give her just the facts ― that mummy has a sickness, she has cancer and she is going to the hospital to get treatment.
It’s good for Naomi to get become familiar with the terminology, so that as she grows older and understands more, she won’t be scared when she hears others speaking about it. She is still very young, so we are not sure how much registered with her. She hasn’t asked any questions since.
Life is good right now, everything is going well and I’m managing my side effects. So what’s my survival plan? I will keep counting my blessings every day and continue my war against lung cancer. Who knows, the cure might be just around the corner.”
Dyanne Søraas, 32, a Singaporean living in Oslo, Norway, is married to Lars Søraas, 38, and mum to Naomi, 2½.
Read on to learn more about lung cancer…
Lung cancer – the facts
Raffles Hospital oncologist Dr Donald Poon Yew Hee sheds light on lung cancer.
- Lung cancer is the third leading cause of cancer death in women. Breast cancer is still the leading cause, with colorectal cancer a close second.
- Some 70 to 80 per cent of women with lung cancer do not smoke ― between 60 and 80 per cent of them harbour EGFR mutations.
- Environmental factors such as air pollution and poorly-ventilated kitchens can cause lung cancer in non-smokers.
- Lung cancer with EGFR mutations are not hereditary. Found in the lung cancer tissue only, not in the DNA of the sperm or eggs, this mutation is the main cause of the uncontrolled cell growth and division .Once this receptor’s mutation sits on the surface of the cancer cell, it will continually signal to the internal DNA of the cancer cell to divide and grow.
- In the early stages, lung cancer caused by EGFR does not have any symptoms and can’t be detected. The tumour may take up to a year or more to advance from stages 1 to 4, but the condition is frequently in either stage 3 or 4 by the time any symptoms show.
- At stage 4, we administer a drug called tyrosine kinase inhibitor, which may include Gefitinib, Erlotinib and Afatinib. Sometimes, the tumour cells become resistant to the drug, so we will check for a further mutation called T790M. This mutation usually develops about eight to 12 months after the tumour is initially controlled. There is a new drug called Osimertinib against this resistant strain.
- Chemotherapy can also be used in conjunction with other treatments. Plus, major cancer centres in Singapore are conducting several clinical trials to explore the use of targeted therapy, including immunotherapy using anti-PD1 agents and more.
Photos: Dyanne Søraas
*Support lung cancer research. Donate at www.anticancerfund.org.
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