I WAS diagnosed with Stage 3 Her2 positive breast cancer. This type of breast cancer occurs in 20% of those diagnosed with the disease. Being Her2 +ve means that there is a protein in your system that drives the cancer to grow.
BY TENDAYI GWATA
Some breast cancers are estrogen positive and progesterone positive which means their growth is hormone driven and some are Triple-negative breast cancer, which means they are negative for estrogen and progesterone, and the protein Her2. Triple negative breast cancer is one of the most aggressive types of breast cancer and most difficult to treat.
I first discovered the lump in my breast one morning, because it actually hurt. It was a kind of throbbing pain and I could feel a lump. I remember not being too sure and thinking it could just be one of those monthly menstrual lumps you sometimes get. I had no reference point because I hadn’t been very good about doing my monthly self-checks and my annual mammogram and scan. So I went to the trauma centre, where they sent me for a scan.
They confirmed the diagnosis through a number of things, firstly I had an ultrasound scan, and then from the scan they did a mammogram, which gave a clearer indication, that it could be cancer. So from there I needed to have a biopsy.
At that point, I was informed that because it was in the breast area and also because it was quite a large lump, I would need a plastic surgeon to remove the lump. That’s when I discovered that we have two plastic surgeons servicing the whole country and that both at the time were not in the country and not due back within the next couple of weeks. Panic ensued. My family and I sat down to weigh the options and we decided that I would seek medical assistance in South Africa. Which turned out to have been a very good decision, because at the initial scan my tumour was 4cm wide and 1cm high and three weeks later at my last scan before starting treatment it had grown to 4x5cm in size. The cancer had also spread to my armpit.
The biopsy was done with local anesthetic, so I was awake which was scary. The radiologist, who did the scan was a no nonsense, straight talking type of doctor, I remember asking her how bad she thought it was and her exact words were: “My dear you are in for a very rough time”. They did both a core needle and fine needle biopsy, both are basically a needle that is pushed through your skin and flesh to the area in question and a sample is retrieved for testing. The difference between the two is that a fine needle biopsy uses a fine needle and syringe to take a sample of cells and a core needle biopsy uses a hollow needle to get a sample of breast tissue and because tissue is taken rather than cells, it gives more detailed information. These samples were then tested and this is where they were able to confirm that it was indeed breast cancer.
I then had to wait a couple of days while they did the tests on the samples they had taken. Eventually on Friday morning, I went to meet my surgeon who sat me down gave me the confirmation. I remember my vision going blurry and then black. For a few seconds I couldn’t see or hear anything. I didn’t cry then, I just remember asking what happens next and being told that I needed to make an appointment to meet an oncologist the following week to discuss treatment options. I remember the surgeon giving me a book on breast cancer and suggesting I read it through before my next appointment. It turned out to be a great book and it got me to embark on research about my situation so that at my next appointment I would have the right questions.
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The following week after the diagnosis, I had my first appointment with my oncologist. I had never met her before; she was part of a team that would work with my surgeon during my cancer journey. Wow, what an amazing woman. I liked her immediately because she was also a no-nonsense person (It seemed that I would be meeting more people like her as I went along which was great because I really appreciate people who tell you like it is especially at a time like that), she sat me down and immediately told me that my diagnosis was not a death sentence and that breast cancer treatment had come a long way with very decent survival rates.
She explained that I would need to have a few more tests, before starting treatment, as they needed to confirm the type of breast cancer, and the stage. The tests included; blood tests and a CT scan, which confirmed that I had Her2 positive, stage 3 breast cancer.
There are five stages of breast cancer from stage 0 to Stage 4. By the time you get to stage 4, it usually means that the cancer has spread to other organs, such as the bones, lungs, brain, liver, lymph nodes or chest wall and they usually refer this as metastasis breast cancer.
Interestingly enough, people can still survive stage 4 breast cancer, but if you have breast cancer, you want to detect it as early as possible, while it is still in stage 0 up to stage 1 or 2, your chances of survival will be much higher. When the doctors talk about survival, it is not just a case of surviving the treatment and going into remission, it covers a period of five years from the time your were diagnosed.
I was then given a treatment plan which basically mapped out what my treatment is going to be like, what to expect and when. For me this was eight sessions of chemotherapy, the first four sessions would happen every two weeks and the second four sessions would be every three weeks.
After finishing the chemo, I would then have surgery. The idea was to shrink the tumour as much as possible so that by the time I got to surgery it would be much easier to take it out. I noticed that their approach was to conserve the breast as much as possible. Then after surgery, I would have to do 30 sessions of radiotherapy. I also needed to have an injection called herceptin every three weeks for 12 months. So that’s 17 injections in a year, one every three weeks directly into my thigh. This injection is specifically for Her2 positive patients and has been proven to ensure the breast cancer doesn’t come back.
Imagine, after all that, you get treated, you beat it and there is still a chance your breast cancer could still come back!!! I remember thinking: “Ok great so there is a plan and it looks doable, it is only eight sessions of chemo. I can do this!!” Ha!! There are no words that will ever prepare anyone for chemo and it has many side effects.
My sister came with me for my first chemo session. I remember they had told me to make sure I had a decent breakfast and a good night’s sleep. Me? Sleep zero, breakfast failed. I was just far too nervous. I kept taking deep breaths and the words that were going round and round in my head were all jumbled up and didn’t make much sense.
When I got to the oncologist, they sat me in a very comfy chair, in a large room full of similar chairs. Most of the chairs were occupied by people of all ages. I think the youngest person I saw was about 15 years old and the oldest must have been about 80.
Chemo, for me, was basically not a big deal. It wasn’t painful at all, it just took forever, three hours, and was very cold. I am so glad they told me to bring a blanket, something to read and some snacks. If you are lucky, you won’t get nauseous and can munch on stuff.
During that first session, someone got up from their chair and went to the nurse’s station and rang a bell. Then the whole room erupted and people were cheering. I was so baffled and couldn’t understand what was going on and why did the guy ringing the bell have such a huge smile on his face. Someone then explained that when you get to the end of your chemo you ring the bell.
I remember thinking that I couldn’t wait to ring the bell. I didn’t at the time realise how much meaning this would have.
Chemo is not easy, with each session of chemo it gets harder and harder to get up keep going. After each session I would be in bed for five days. In those five days, I could barely eat, food did not taste like food, the texture was no longer the same and water was so hard to swallow. I would be in pain throughout my entire body, and the pain was different depending on which part of the body. The worst for me was bone pain. It’s exactly as the name says, pain in the bone. I still don’t have words to describe this pain. It would come unexpectedly and leave unexpectedly. I never knew when it would hit and how long it would last. I just knew that when it came there was no position I could get into, nothing I could take to make it feel better. I would just have to ride out the pain. I remember having moments when it was even difficult to breathe, those were the moments I would ask myself if I would be alive the next day. I remember having mouth ulcers, which is also another side-effect, these were so bad, it became difficult to put anything in my mouth and talking became very difficult. I did get pain medication to help with these side-effects but I always found it only worked for a couple of hours and then I would have to ride out of it until I was able to get the next dose. My hair fell off 10 days after the first session of chemo. I noticed it in the shower; my hand just came away with a clump of hair. I was expecting it but it still broke me. I remember my son and I sitting outside in the sun, both of us pulling out clumps of my hair. He was 4 years old at the time and thankfully this was just a fascinating thing happening to his mum. He asked lost of questions including “when will my hair start to fall off?” The way chemo works, it attacks the cancer cells in your body but it also attacks the healthy cells. So, your immunity becomes very low, to the extent that a common cold can be something that could land you in hospital fighting for your life. By the time we got to the end of session eight, I rang that bell and it was the best moment of 2019 for me. I felt like I had just come out of a war and survived. In fact, on that day, I remember feeling weak but when it came to ringing the bell, I got a surge of energy I didn’t even know I could muster. After that, I had a break, as it was December. I had Christmas at home and my birthday in the first week of January. I wasn’t really keen to celebrate. I kept thinking about the surgery I had to go through the next week, as that is when we would find out how well the chemo worked. Thankfully the chemo worked so well and the surgeon said the tumour was completely gone and all he had to do was clean out the flesh that had been affected by the tumour. They call this the margins. They also removed 10 lymph nodes from my armpit; little did I know that this part of the surgery is what would take the longest to recover from. After the surgery, I had to move around with a drain hanging out of my side. This was basically a tube coming out of my skin with a bag at the end. With this kind of surgery, for a while after, the area around the part which was operated on will produce liquid that needs to be drained out. I would have to empty the drain myself, twice a day and measure the amount of liquid that came out. Only at a certain point would they then remove the stuff. It was gross!! I remember going to the shops one day because I was fed up of being indoors only to have my drain banging into things which was super painful. I also had to do physiotherapy after surgery. I managed to do it for two months and then had to stop when I started radiotherapy. The physio is very important as it helps stop that fluid build up which continues even after the drain is removed and because the surgery had included removing lymph nodes from my armpit, I needed to learn to use my arm again. At the beginning I wasn’t even able to raise my left arm above my waist and they say if you don’t do the exercises, you risk your arm being stuck with minimal movement. I would say the radiotherapy was probably the easiest part of the whole treatment plan. You basically get to lie down on a bed under a machine that then beams rays to the area where your cancer was, the whole thing takes about 20 minutes and you need to do it five days a week. The reason why I needed radiotherapy was because although the chemo got rid of the tumour and the surgery of the affected flesh, there was still a risk that I had cancer cells floating around and the radiotherapy is needed to kill them off. Radiotherapy is still a bit of a wild ride. Around the 10th session my skin started changing colour, a few days later the whole area was completely black and a few days after that I started getting blisters. Radiotherapy burns your skin. It’s painful and the only way to get through it is to be naked as long as possible in between sessions and if you have to wear clothes, only very loose 100% cotton. It also made me feel tired, a tiredness that I actually had never felt before, especially just after each session. I would get home and just pass out. There was nothing I could do to stay awake, my eyes would be so heavy, so would my arms and legs, in fact my entire body would feel like it weighed a tonne and I just needed to get into bed. Throughout all this, I had quite a few tests done. I would have a blood test before each chemo to check my white blood cell count; I would have a cardiologist check my heart every 3 months because the chemo drugs could destroy your heart. During radiotherapy I would also occasionally have blood tests done to also check on my white blood cells. These tests are so important but also very tense times because if at any point the results are not what they should be, it could mean stopping treatment for a while until things get back to an acceptable level. To me this always scared me because I didn’t know if I would be able to keep up the momentum if I had to stop at any point and also what it would mean for the whole treatment. I encountered a few challenges throughout this journey. Some of them were as simple as keeping my cool. Some of the medication seems to result in you having a very short temper and there is nothing worse than losing your temper with the people who love you and are trying to help you through such a difficult journey. Some challenges were trying to keep a positive head space. They say that your survival of something like this is largely dependent on your attitude. If you are positive, you take positive actions, you have positive thoughts it somehow energises you especially during that dark days when things don’t look so bright. So to do this at the beginning was easy, first few weeks? No problem. I had my family and friends cheering me on, I felt strong, yeah the side-effects were bad, but I was still standing. Yes I am going to beat this cancer. But as the weeks went by it became harder and harder as I became weaker and weaker. Then I realised being strong and positive did not mean having to smile and cheer all the time. Some days were so bad and being positive to me was saying to myself, “Tendayi, this pain is temporary. Remember that it only lasts for five days, just get through the five days and things will be different.” My favourite mantra became “One day at a time, and sometimes; One hour at a time” Some of the challenges were things that made me sit up and start asking questions about the fairness of cancer treatment. For example, the drug Herceptin that I needed to have every three weeks for 12 months, the drug that increases your chances in making sure that the cancer never comes back. That crucial drug was for sale in Zimbabwe at US$2 100 per vial, that means someone with my kind of breast cancer would need to pay US$35 700 to be able to stand a chance of not getting the same cancer again. Meanwhile this very same drug was available in South Africa at US$600 per vial. For anyone, both prices are expensive but why was the drug so expensive in Zimbabwe? I liked this kind of challenge though. It distracted me from the aches and pains and got me to focus on finding out why and what could be done. There is something about refocusing your pain that really helps you get through days at a time. Thankfully all this rechannelling, chasing up and asking people why and pushing for change eventually resulted in the drug price being reduced for Zimbabwe so now people can get the drug at the same price as across the border. This is quite a big deal because Herceptin is not one of those drugs you can just send a runner to get for you. It has to be kept under specific temperature, between two and eight degrees Celsius and if the temperature goes anywhere out of that range the drug won’t work. So the only option to get the drug at the SA price, was for you to fly to SA, pick the drug, fly back and get it stored properly straight away as the packaging for travel was only good for a short period of time. The other big challenge I encountered was when the only working radiotherapy machine in Harare broke down during treatment in the middle of the first lockdown. Because I had not got to the end of my treatment we couldn’t be sure that if there were any cancer cells left after the surgery and chemo they had been completely destroyed. The options going forward for me included a possible mastectomy. The only other machine working was in Bulawayo and at that time the COVID-19 infection rates were rising in that area and it just wasn’t an option. I remember thinking to myself that I needed to understand what could be done as I had learned that there were three other radiotherapy machines in Harare that had been broken for over a year. So many things didn’t make sense to me. As I started asking questions and doing my investigations, I then learned that there were over 500 of us waiting for treatment and no working machine. This really upset me because I remembered the people who would come to radiotherapy who arrived in ambulances and wheelchairs, people who had tumours, people who by not having treatment meant their tumours would start growing and grow aggressively. That’s when I started campaigning for the broken machines to be fixed. I was relentless. I phoned everyday (social distancing didn’t allow me to go anywhere) but it didn’t stop me. I went to Twitter and I went to the media and finally arrangements were finalised and the machines were fixed. One of the interesting things I discovered during that time was that when I googled “broken radiotherapy machines” the results I found included reports of the same situation in other African countries. It became apparent that this was not a situation unique to us in Zimbabwe, although it’s a story for another day, its definitely food for thought. It was so great to move my focus from my fears and pain to work on something that would not only help me but many people. That gave me strength and purpose and most importantly it felt good. Today I can proudly say that I have met many challenges in the last 15 months and I have managed to overcome them. It’s taken a lot out of me I won’t lie, I feel exhausted but it’s a satisfying kind of tiredness. And the best news of all? I am now officially in remission!! Yeah I beat cancer! Now I want to give back. I want to do more for the breast cancer cause and part of that is that I have joined a charity called Zimbabwe Breast Care Trust. The charity, started by Noleen Mbuwayesango who I met when she was doing a heart echo (checking out to see if my heart was doing well during treatment), opened its doors just as the Breast Cancer Awareness month began. During our first meeting, it turned out that Mbuwayesango was also going through treatment for breast cancer and this impressed me greatly! I was barely able to do much physically and here was this woman still treating other people despite the challenges she was facing. We are currently working very hard to raise awareness, remind everyone to do their monthly breast self-checks and go for their annual mammograms and scans. We have designed a poster that helps people keep track of their monthly checks by enabling them to note down the self-check findings and have a comparison for the next one. Our charity will also continue some of the work that I have started such as looking for ways to reduce the cost of breast cancer treatment, raising money to help those who can’t afford mammograms and treatment. I hope you can all support us. Please like our page on Facebook, Zimbabwe Breast Care Trust and visit our website www.zbct.co.zw.
