As a young mom to a 4 month old infant at 27, the news that she had cancer was inconceivable for Meiru and her family. And yet, it was an experience that birthed newfound spiritual convictions and best of all, a blessed new addition to the family.

Introduction and pre-diagnosis

Introduction

Meiru is a mother of two and an owner of an online bookstore that specialises in Chinese books. In 2009, she found out that she was diagnosed with desmoid fibromatosis when her first child was only 4 months old. Although this rare form of cancer does not metastasize, it is aggressive and can cause life threatening problems when it compresses the vital organs. The tendency for recurrence makes treatment of these relatively rare fibrous tumours challenging too. Because of how rare the condition was, the doctors at the National Cancer Centre were not able to meaningfully stage the cancer.

The trigger of the cancer

It is more commonly associated with familial adenomatous polyposis (FAP), also known as Gardner syndrome. However, desmoid tumours can occur in women during pregnancy or after a surgical delivery, which is believed to be caused by a combination of elevated hormones and surgery. In my case, it was not clear what the cause of cancer was, but it was attributed to the likely cause of elevated levels of hormones due to pregnancy.

Diagnosis

How I found out about my diagnosis, and how my family and I reacted to it

In December 2009, when my son was 4 months old, I discovered an unusual swelling around my right collarbone. At that time, I dismissed it as engorgement due to pregnancy as I was overwhelmed with the demands of being a new mother and also preparing to return to work full time. One day, while I was at a meeting with a few of my staff members, a superior at work who had experienced pregnancy before pointed out to me that my collarbone did not look normal. She was extremely worried and urged me to have it checked out as soon as I could. Luckily, I had a friend who worked in the National Cancer centre who scheduled me for scans and biopsies that revealed that I had a locally aggressive desmoid tumour. At the time, I was very shocked because I was only 27 years old and did not expect to get cancer, especially at such a young age. Because of how unexpected the news was, throughout the initial stages I was almost in a daze, because I didn't really know what to expect.

Furthermore, since there was so little data with regards to my condition, there really wasn’t much I felt I could do - I simply followed my doctors’ recommendations. My main focus was on recovering because I wanted to be able to care for my child, because I knew that as long as I was sick, I would not be able to care for him.  At the time I only told my parents and in-laws. They were extremely shocked and in denial. For someone of my age to develop cancer was incomprehensible to them. They spent a lot of time googling my condition to try to understand what was happening, but it made them more anxious instead. Because talking about cancer is still a bit taboo amongst more traditional members of my family, we didn’t tell the extended family members about my illness.

Treatment

The treatment process

I underwent an extensive surgery to remove the 9cm by 4cm tumour, along with my right collarbone, pectoral major muscle, parts of my 1st to 3rd ribs, some veins and blood vessels. This was followed by a month of intensive radiotherapy.

There is limited data but some studies show that 30-70% of desmoid tumours recur after surgery, and there are cases of recurrence even after 10 years. Thankfully, I have been monitored closely and regular MRI scans have shown no tumour recurrence since.

The operation process

I had a 4 hour surgery scheduled to remove the tumour from my right collarbone area.

However, when the operation began, they realised that the removal process would be trickier than they initially thought it to be, so the surgery ended up being about 10 hours long. During that time, my family was panicking because they had expected me to come out after 4 hours, but it took 10 in the end. The tumour had been aggravated by the pregnancy hormones (pregnancy hormones still remain in the body for a while even after the birth of a child) and had spread further than the doctors had anticipated, and had even wrapped around major blood vessels that were connected to my right arm. If the doctors were not precise enough, I could potentially have lost the ability to use my right arm. After I came out, I was in the Intensive Care Unit (ICU) for about 2 days and the High Dependency Unit (HDU) for a few days after that. Because they had to remove my collarbone (which was needed for many actions involving the right arm) , I had to re-learn a lot of things I had previously been able to do effortlessly like brushing my teeth, tying up my hair, etc.  It took a long time for me to learn to adapt, and for my family to learn to adapt to my needs after the surgery.

Recuperating took a while, and even after the surgery, I had to do physiotherapy to improve my range of movement. Till today, 13 years after my surgery, I still go for regular physiotherapy sessions.

Reflections

The most meaningful and challenging thing I went through while battling cancer

The experience was life changing for me. As mentioned, I was only 27 years old at the time of my diagnosis. Additionally, I was basking in the joy of having my first child - a newborn. The diagnosis came as a rude shock.

One of the most challenging aspects of having cancer at such a young age was the hesitation towards trying for another child after the cancer. Since the doctors suspected that the rapid growth of the tumour had been influenced by pregnancy hormones, they discouraged us from having another baby. On one hand, we counted our blessings that I had recovered and we have a beautiful, healthy son. However, it was extremely hard to accept that something as wonderful as pregnancy could give me cancer. Furthermore, my husband and I had always wanted a big family, so we struggled for years and could not accept this cruel reality.

After about 7 years of being in remission, my husband and I decided to take a leap of faith by trying to conceive again. As our whole family came to accept Christ in the years leading up to our decision to try to conceive again, we spent a lot of time praying and getting assurance that I was healed, and God blessed us with a beautiful baby girl.

The experience of agonising over the decision to try to conceive again was both the most challenging and rewarding experience to come out of my cancer journey.

Words of advice

How family and friends can better support cancer patients

Firstly, I think friends and family can try to be more considerate towards the patient. As the patient goes through the treatment process, it is understandable that loved ones will be concerned about the treatment plan. However, it may not be helpful to give unsolicited advice or badger the patient about things that are out of their control. For instance, because some of my family members had a hard time accepting what was happening to me, they would often second guess decisions that my doctors had made and question me about it. It was definitely a learning curve for them and me as I had to navigate the tensions created by their doubts as well as the cancer treatment itself. Eventually, we all learnt how to navigate the situation more tactfully, and that definitely made everything more bearable. Instead, friends and family can acknowledge that the person is going through a difficult time, and simply be there for them to provide encouragement and support.

Advice for cancer patients

“Take time to grieve properly”

One piece of advice I would give to people battling cancer would be to take time to grieve properly. Looking back, I put on a brave front for everyone else and bottled up my fears and sadness. It’s okay not to be okay and it’s important to address your feelings and grieve if you have to.

The brave team would like to thank Meiru for taking the time to share her experience and for her generosity in sharing her story here on the Brave website.