Here I am, on the other side, which was unimaginable this time last year.
“What is this?” The doctor said, delicately poking at my left breast. “There is a lump here.”
“What lump?” I replied. I was unaware of the lump and expected it to be just one of those things, yet those words changed my life.
I had gone for a routine full medical check-up in August 2019. The doctor had run all tests including a pap smear, blood check, physical exam and breast check.
As October is breast cancer awareness month, I am sharing this story as an encouragement to others to take their routine checks seriously and demystify what tests and treatments involve.
Back to my story. She recommended I go for an ultrasound and a mammogram. I saw a different doctor at a different hospital who confirmed that the lump was “suspicious” and recommended a biopsy.
They even wrote suspicious on the test results, which was upsetting as I wanted to know definitively whether it was cancer. I went for the biopsy, all the while hoping that they will say it was all a mistake, but the kindly avuncular doctor confirmed it — invasive ductal carcinoma, which is the most common type of breast cancer.
After another hormone test, they found out that my cancer was HER2 positive, which means I have a gene mutation for ‘human epidermal growth factor receptor 2’ — a protein that promotes the growth of cancer cells. In other words, this cancer was an aggressive type.
Understanding whether breast cancer is HER2 positive/negative, progesterone positive/negative, or oestrogen positive/negative helps doctors prescribe a more effective treatment regimen.
I became fluent regarding different breast cancers, what the tests entail, and what medications are available.
What the Data Says
Breast cancer risk factors include genetic mutations like the BRCA gene, family history of breast cancer, late age of first childbirth, prolonged exposure to hormones including some birth control methods, obesity, alcohol use and physical inactivity.
According to research by the American Cancer Society, one in eight women will get breast cancer in their lifetime. Breast cancer is the second most prevalent form of cancer and the second type of cancer that most people die from.
I never saw myself as one of the one in eight women are at risk of getting breast cancer in their lifetime, yet it happened. (men get breast cancer too but to a lesser degree).
The World Health Organisation reports there is a low survival rate in developing countries because of late diagnosis.
I am not exactly an introvert, yet I withdrew into myself. Apart from my family and a few close friends, I did not go public. I needed to process the news, to get to a place of acceptance.
To be honest, it felt like the news came out of the blue, unexpected and devastating. Sometimes processing of terrible news comes in silence, not in being surrounded by a crowd.
When the doctor first said ‘cancer’, it felt like she was saying I was dying tomorrow. It was one of those deep gut reactions that you cannot control. This, despite knowing that many people have survived treatment and the existence of chemotherapy and other treatments.
I eventually started telling people months into my treatment, and it was shocking and somewhat draining how many people felt obliged to share unproven treatments and supplements.
I had in the meantime relocated and started looking into treatment options. I decided on South Africa, which was convenient because I have family support and there are more options available than in Malawi.
I saw an oncologist, and she prescribed chemotherapy, surgery and radiotherapy treatment, in that order. I had a heart check to verify that my heart could handle Herceptin — which is a drug specifically for HER2 positive cancer, a bone test and other checks.
I started chemotherapy in November 2019. It was a cocktail of four drugs administered via a drip for 6 hours. It surprised me at how painless the whole procedure was.
The doctors had installed a chemotherapy port in my chest in case veins collapsed because of the treatment, like they sometimes do. They gave me documents for each of the medications and what side effects to expect. Those lists were dauntingly long!
I went to my first session terrified of the potential side effects. I came out feeling nothing untoward. I got home and suddenly, what felt like a full-body cramp took hold of my entire body and I had heart palpitations.
Fortunately, this only lasted for 10 minutes. I spent the next two days feeling normal, except for the unpleasant taste in my mouth and lack of appetite.
Then the actual effects began. I sometimes felt dizzy and tired, I had excessive diarrhoea for about 10 days, nausea, chemical menopause and a runny nose.
It is incomprehensible that effects can be different for people on the same regimen; I think mine were the milder of the lot. I was thankful I did not have constant nausea and mouth sores.
I had chemotherapy as an outpatient every three weeks until March. I started dreading it — just when I started feeling well; I had to start the process again.
The oncologist had also warned me I was going to lose my hair. I had dreadlocks and cut them before they fell out. And sure enough, all hair eventually fell out around the third chemotherapy session. Losing my eyebrows bothered me more than losing the hair on my head.
I also had to take extra precautions like avoiding crowds and washing hands like a fiend because of my lowered immunity way before COVID-19 hit and everyone had to do the same.
The second phase of the treatment arrived soon enough. I could either have a lumpectomy which removes only the tumour and surrounding tissue or a mastectomy where doctors remove the entire breast.
I agonised for weeks and could not decide! They sometimes prefer a mastectomy as a preventative option because breast cancer can recur.
Tests after chemo showed that the tumour had shrunk significantly, such that a mastectomy was unnecessary. The doctors discussed with me what it all meant, and I opted for the lumpectomy. I had surgery a day before lockdown started in South Africa and was hospitalised for two days.
Recovery was brutal
Although they only took out the tumour and some lymph nodes (since there were indications of cancer in my armpit) I could not do much for myself — could lift nothing heavier than a cup of tea, as the doctor had advised.
I had to do certain exercises to regain mobility. Besides, it affected the other breast, since the doctors had to match the two, to avoid them looking different and misshapen.
The doctors beamed as they told me that there was no trace of cancer in the remnants of the tumour or lymph nodes that they had taken out. Chemotherapy was a success!
The breasts healed after a month, and I moved on to the third phase of the treatment, radiotherapy. Up to now, I am still shocked that there is no radiotherapy treatment in Malawi. They prescribe radiotherapy as a preventative measure, to ensure that there are no traces of cancer left to grow back once chemotherapy drugs clear from the body.
I had to take a COVID-19 test prior to starting treatment, which was thankfully negative. The first few weeks were fine — I lay still in the machine, arm raised, holding my breath for 10 to 30 seconds while they administered the rays.
The treatment lasted for six weeks and by the fifth week my skin darkened and I had burns on my neck and chest. I finished the last dose of radiology treatment on 8th June and treated the wounds at home with medication prescribed by the radiotherapy oncologist.
I still have Herceptin injections every three weeks until end October as a preventative measure, but otherwise, my treatment is complete. Going to the oncology hospital during COVID-19 is a whole other experience with additional screening procedures.
What else helped?
Prayer surrounded me. I am grateful for those who constantly checked up on me. I got to learn of some friends and met people who had gone through it who encouraged and supported me.
If you are going through a terrible diagnosis, you are not alone. Others can walk with you and support you. I had a doctor friend with whom I could discuss what I did not understand. The doctors answered all my questions and were unstinting with information.
I was privileged to have access to a medical oncologist, a breast surgeon, a reconstruction surgeon and a radiation oncologist. (Additional blessing is that all of them were female, even though I did not go looking for an all-female team!)
I also eventually talked to a therapist who helped me process the shock and the physical trauma of a cancer diagnosis and going through treatment. And I cannot stress enough the importance of having family around when you are going through something like this.
Being in a supportive environment helps when things get bad or the pain is too much. Since I started sharing my story, I have engaged with several people who are going through something similar, and it is empowering to share information and walk alongside someone else who is going through the same thing.
Why am I sharing this? It is a call to action. Hearing stories encourages and motivates people. I read an article from the Malawi medical journal about cervical cancer, which said that it takes women over six months between seeing symptoms and seeing a specialist.
Six months! There are many reasons for this. However, the part to do with negligence should be avoided. Some aggressive cancers progress to a late stage in this period.
Women over 40 should have annual mammograms. A mammogram images the entire breast tissue and identifies any unusual lumps and growths, even those a physical exam can miss.
A woman above 21 should also do a self-breast examination every month looking out for signs like inverted nipples, pain, different discharges, lumps, swelling and skin reactions.
Many websites explain how to do the checks — standing, lying down and in front of a mirror. Early detection saves lives. And if you find something, don’t panic. Consult a doctor. Some lumps are benign and some disappear on their own. That goes for cervical cancer symptoms too.
Health checks are important. Don’t wait to feel sick or get worse before seeing a doctor. Schedule an appointment at least once a year where a doctor can check that everything is all right with you.
There are a lot of undiagnosed ailments that people are walking around with, and we end up saying anawakhoma ndi hamala mmutu yet a preventative check-up could have identified if the person had diabetes, hypertension, cancer, HIV or whatever condition and their lives saved.
We need to adopt a culture of preventative medical checks as part of life. And my hope and prayer remain that the cancer hospital scales up and becomes operational sooner rather than later.
There is a definite increase in the prevalence of cancer in our country, and we need to have the resources to deal with the scourge. Getting treatment abroad is costly, and not everyone can access it.
It bothers me that Aleke Banda, who was outspoken about this issue, passed away 10 years ago, yet we are nowhere near having all the resources we need within Malawi for the cancer hospital he so passionately advocated for and many continue to suffer and some die due to late diagnosis and inadequate facilities.
Disclaimer: I am not a medical doctor. If you have questions relating to breast cancer, its treatment or any such issues, consult your gynaecologist or doctor