Ronni's Story - 'I'd always wondered what it would be like to be struck by lightening and now I knew'

16 Sep 2022

“My name is Ronni and I am 57 years old. I was diagnosed with triple negative breast cancer in April 2021. My aunt on my mother’s side of the family was diagnosed with and passed away from breast cancer around 35 years ago (she was 57). My grandmother, on my mother’s side of the family also passed away from breast cancer at the age of 87. After my diagnosis, my parents and sister had genetic testing for the PALB2 gene. Unfortunately, my sister has also inherited the gene. Surprisingly the PALB2 gene is from our father’s side of the family!

I’ve not been particularly vigilant about checking my breasts. I was diligent about having mammograms every year once I’d turned 50, as recommended, particularly with my family history. I thought I was being proactive about my breast health.

I rarely get sick. I wasn’t sick when I was diagnosed with breast cancer. It was breast cancer treatment that made me unwell.

In April 2021, like many women I had been trying to lose weight. I was pleased that a had lost around five kilograms. The day before finding the lump in my breast I had been doing a lot of gardening which involved heavy lifting. When I first felt the lump, I thought I’d pulled a muscle, but just to be sure I thought I should have it checked by my GP. Even the GP thought I had a pulled a muscle, as the lump was such a large mass. It was recommended I get it checked anyway with an ultrasound. I had an appointment the following day. The ultrasound findings were that it was rated a “4” which confirmed it was a cancerous growth. The cancer diagnosis was confirmed a couple of days later after a biopsy was performed at the Wesley Hospital. However at this stage we did not know what type of cancer it was. The wait for the results was unbearable. Because of Covid I was given the news that I had triple negative breast cancer over the phone. I still really didn’t know what this meant. I didn’t know what triple negative breast cancer was.

Triple negative breast cancer does not have the three most common type of receptors known to make most breast cancers grow: oestrogen receptor (ER), progesterone receptor (PR) and HER2 (human epidermal growth factor receptor 2). Around 15% of breast cancers are triple negative.

As soon as I was given my diagnosis I was on a rollercoaster. There was so much information to process, hard conversations to have, decisions to make. I’d always wondered what it would be like to be struck by lightning and now I knew.

The hardest conversation I had was breaking the news to my daughters, my sister and my mum and dad. How do you tell your family this awful news? Nothing or no-one can prepare you for these conversations. This is a time when your own mortality is staring you straight in the face and there is no guarantee that the treatment will be successful. I had learnt that triple negative breast cancer is extremely aggressive. There was no time to waste.

Suddenly I was on this ‘breast cancer’ trajectory, where your feet are taken out from under you and you’re trying to remain steady, while processing so much information. The standard treatment for triple negative breast cancer consists of chemotherapy to shrink the lump, surgery and radiotherapy.

My treatment began with a consultation with a surgeon to decide the best course of action. I wanted to get a second opinion. I was told in very rude terms by a medical receptionist that it was inappropriate to ‘shop around’ for a second opinion, that I was ‘taking up valuable appointment time for other patients who were also dealing with their initial cancer diagnosis.’ That was the day I broke down in tears. I couldn’t believe that someone that worked in such a critical area could be so uncaring! I was in shock and needed reassurance, but it wasn’t forthcoming.

I was now on the breast cancer processing conveyor belt and there was no stopping it. As a Real Estate agent, I know that owners typically get three or four agents to give their opinion. I was shocked to find out that this wasn’t how breast surgeons allowed patients to arrive at their decision when it came to deciding which surgeon they wanted and what treatment they agreed to. I wasn’t just selling a house I was trying to save my life! I ended up going with another surgeon and felt comfortable with my new team. I use humour to get by and my team were serious, but we also had fun along the way.

My initial surgeon recommended I see a geneticist and to see if I had a breast cancer gene. He recommended this as Triple Negative breast cancer is typically genetic. The results take around three to six months to come back.

While I was waiting on the genetic results, I began my chemotherapy treatment. In all, I had 12 rounds of chemo. I had four lots of Doxorubicin (commonly known as the ‘Red Devil’ as it is kicks like a mule and is red in colour). I had an anaphylactic reaction to the first round of Doxorubicin; not a pleasant experience! It was followed by eight rounds of Paclitaxel. This chemo has caused permanent nerve damage to my nerves in my feet – it truly is the gift that keeps on giving!

I quickly lost all my hair and chose to wear a wig. It made me feel more confident to look as ‘normal’ as possible. During my treatment, I was still working, and wanted to look ‘professional.’ I had to keep working in order to earn money, but it was immensely difficult. I was fatigued, nauseated and lost a lot of weight because I just wasn’t hungry.

There’s so much you don’t get told during your breast cancer journey. I was diagnosed with neutropenia after my first “Red Devil” chemotherapy treatment and ended up in hospital for ten days. Neutropenia is one of the most common and serious side effects during chemotherapy. It is caused by a reduction in white blood cells, which leaves you vulnerable to infection. I ended up with a fever and had a white blood cell count of .0001. I needed urgent hospital care including blood transfusions and antibiotics for sepsis. Blood transfusions are quite common throughout chemotherapy treatment as you need a strong red blood cell count to carry oxygen around your body, therefore making the chemotherapy more effective. I’m so grateful to those who donate blood.

While in hospital my immune system was so depleted, I had cold sores all over my face. My daughters were shocked when they came to visit. I asked a nurse for help who told me: ‘It was normal to get cold sores throughout cancer treatment.”  I understood but requested anti-viral drugs to prevent it happening. Thankfully, the nurse did. The cold sores stopped growing and healed. It’s a good example of how you really do have to be your own advocate during this time.

My husband and daughters were an incredible support. My husband would search for foods to tempt me, even though everything tasted like metal. My daughters and I would all lie in my large bed and watch movies together. (They’re also now more aware about breast health and the importance of self-checking and mammograms). We were in our love bubble. It had been horrific telling them my diagnosis, along with the rest of my family. I still have nightmares and trauma associated with it.

After chemotherapy I had an ultrasound and was told I had made the radiographers job very difficult as she had trouble finding the tumour during the ultrasound. The chemotherapy had done it job and shrunk the tumour!

My surgical team recommended for me to have a lumpectomy (at this stage I did not have the information from the geneticist). My husband suggested that we wait for the genetic testing results. However the surgical team pushed for me to have the lumpectomy as they felt confident that they would remove the whole of the cancer. I had the sentinel lymph node dissection at the same time as the lumpectomy. These were extremely traumatic and painful procedures. The ‘mapping of sentinel node’ involved hook wires being placed via local anaesthetic, whilst my breast was in a mammogram. This was to prepare the surgeon for the lumpectomy. I’m pretty tough but I almost threw up after the fourth time they tried to insert the hook wires.

Thankfully, the removal of the sentinel node showed that it was clear of cancer. The lumpectomy was unsuccessful as there were cancerous cells around the margins of breast tissue taken. My surgeon told me I would require a mastectomy. My husband pushed to get in early to see the geneticist whose advice was clear; it was a no brainer that I needed a double mastectomy. The geneticist said: ‘All surgeons want to preserve healthy breast tissue but my view is that you have had cancer in one breast and you will get it in the other.’ He described the PALB2 gene as BRACA’S first cousin – a little-known but nasty beast.

I decided to have a double mastectomy including the removal of my nipples. A double mastectomy also meant that I wouldn’t need radiation. The mastectomy involved the removal of all the breast tissue. I elected to have immediate breast reconstruction using a new procedure where breast implants are wrapped in - and held in place with - cadaver skin.

My message to anyone diagnosed with Triple Negative Breast Cancer is to have genetic testing done straight away and to PUSH to have a geneticist interpret those results urgently. In my case if I had known the geneticist’s advice at the right time, I would have not had a lumpectomy and would have proceeded straight to having a double mastectomy.

I do miss my nipples! I’m in the process of deciding on nipple tattoos once my scars heal. My nipples were my erogenous zone, and now I can’t bear for my breasts to be touched. They are still quite sore and numb. They do look quite normal though and the scarring is minimal. My surgical team have done an incredible job.

Pink Hope were a wonderful resource. Oral hygiene is extremely important throughout chemotherapy treatment; nobody gave me much information about ulcers, something else you tend to suffer from during treatment. Hospital grade mouthwash is a must! After many courses of antibiotics, I kept thrush at bay by swishing coke in my mouth (a nurse’s tip!).

I am yet to schedule having my ovaries removed (strongly recommended when you carry the PALB2 Gene). My sister and I are going to see if we can get a “two for one” deal! My sister is now much more vigilant about checking her breasts since she has become aware that she carries the PALB2 gene. As Pink Hope were advocates for self-checking of breasts for both female and males on the first of every month, I have shared and told, not only my sister but anyone who will listen to check their breasts then. I tell them to take a monthly photograph to track even the slightest change in appearance. If I had heard Pink Hope’s message earlier and had been doing my monthly checks, I may have found my lump earlier. I am incredibly lucky that I did find it, and that I had the choices that I did at the time. If I had not found my lump and waited for my usual yearly mammogram in November my story would be a very different one.

I’m now six months cancer free. After being told this news everyone expects you to ‘get on with it and be appreciative and happy.’ Although I wanted to feel this way, I was not ready for the tsunami of grief that hit me after the treatment stopped; when my brain caught up with what my body had endured and I began to process the trauma. Both my surgeons and my oncologist warned me to watch out for the depression that can hit when treatment ends. However, there was no safety net  or ongoing care to ensure I didn’t fall into the abyss of depression.

I’ve just started to see a psychologist to help me with my post-traumatic stress. When you’re in treatment there’s no time to think about how you feel emotionally. Now my treatment is over, I have time to process my journey. I don’t want people to feel sorry for me, but breast cancer treatment is an exceedingly difficult thing to go through. Emotional support is just as important as the physical support.

I’ve always been healthy, but I’m even more so now. I don’t drink alcohol anymore; I juice every day and I eat as organically as possible. Even though my cancer was genetic and it was a ‘ticking time bomb’ – I think it’s more important than ever to look after my health.

Today I know that I’m blessed, surrounded by the love of my beautiful family and friends. Their unwavering support and love got me through. I meditate regularly, enjoy reading daily life-affirming quotes and wake up every day and think about how lucky I was to have choices. I practice gratitude daily and am stepping into the rich future ahead of me.