A breast cancer diagnosis can dramatically alter your life and after surgery, or once treatment ends, you find yourself living what many describe as a “new normal”.
Pink Hope asked three incredible community members and breast cancer survivors, at different stages of their post breast cancer journeys, to share their stories and how they’ve adjusted to their own version of ‘normal’.
Jessica – 3 years post diagnosis
“I learned how important my family, and my closest friends are to me and how much support I so generously receive from them.”
I discovered I had the BRCA2 gene in October 2016, when I was 29 years old, as a result I started having annual screening, my first ultrasound and mammogram were clear but in July 2017 a 1cm tumour was found in my left breast during a routine MRI. On my 30th birthday, I had a biopsy and the tumour was diagnosed as a grade 3, stage 1 triple negative breast cancer. At the time, my now husband and I were engaged, working and living in Singapore and I was about to start studying for my masters.
Very quickly, we packed our lives up and moved back to Australia, moving in with my parents. I had a lumpectomy, followed by a round of IVF, as I was yet to have children, 14 rounds of chemotherapy and a bilateral mastectomy with expanders followed by an exchange to implants, four months later.
Although it has been almost three years since my surgery and treatment, I still feel like I haven’t regained my full energy back. I experience occasional discomfort from my implants, usually if I try something new at the gym or sleep funny, but it’s the fatigue I struggle with the most. I try to manage this by taking care of myself with regular exercise, a healthy diet and making an effort to get enough sleep.
The part that didn’t end when my treatment was finished, was the impact on my emotional and mental health. There is always a niggle at the back of my mind that the cancer could come back, and I also feel guilty for the friends and people I met during treatment, that were not as lucky as me and lost their lives.
I have found doing everything I can, to be as healthy as possible, and exercising regularly helps my mental health. I learned it is important to catch myself when I am having certain thoughts or feelings so that I can re-frame them. For example, if I find myself worrying that my cancer might return, I try to replace this thought with something my doctor told me, that my cancer was caught super early and therefore I have a good prognosis.
For my husband and I, our relationship took a bit of a back seat to cancer because if I didn’t prioritize and take care of my health, there may not have been a relationship to come back to. I talked about this in more detail in a blog you can read here.
Some days I feel like everything has changed as a result of my breast cancer, my husband and I were at a place in our lives and careers where we were launching our future, but I feel that cancer ruined these plans and set us back. I am reminded daily of my cancer from my scars, the medication I need to take or by things in everyday life, like people breastfeeding their children, which is something I now won’t be able to do.
The hardest part of my experience was that even though I knew there was a chance I could get breast cancer; it was not expected at my age. People say “there is no good time” to get cancer, but by having to move home for treatment, I lost an amazing career opportunity and I feel guilty that my partner also had to quit his job to move back to support me.
But one of the greatest silver linings, was learning how important my family, and my closest friends are to me and how much support I so generously receive from them. I also came to the realisation that I need to speak up and advocate the importance of knowing your family history, because genetic testing saved my life.
To a woman who has just received a breast cancer diagnosis, I say follow your intuition and always do what is best for you, not what others tell or want you to do. You need to stay strongly aligned with your values and find a way to block out any negativity and unhelpful opinions of others.
Wendy – 7 years post diagnosis
I learned that a breast cancer diagnosis is not the end, but often the beginning – it’s the beginning of a hard road to recovery but also the beginning of a new way of looking at life.
I am a 49-year-old Mum of two beautiful children aged 17 and 12. When I was 41, I discovered that I carried the BRCA2 gene which I inherited from my Dad. My grandmother died of breast cancer when my dad was a baby, she had 6 sisters and 4 of them also died at an early age from breast cancer. When I discovered that I had the gene, I went on the wait list for a preventative double mastectomy, in the meantime commencing routine MRI check-ups.
During my second annual MRI, in 2013, a 9mm tumour was discovered in my right breast and I was diagnosed with early stage breast cancer. My cancer was oestrogen positive, so we decided to proceed with an immediate double mastectomy with DIEP recon and then we removed my ovaries and tubes a couple of months later. I thankfully did not need chemo or radiation but did have two lymph nodes removed.
As a result of my surgery, I have total numbness in both breasts and across my tummy where my DIEP scar is. And as a result of my oophorectomy, I was plunged straight into surgical menopause. This, combined with taking Tamoxifen, has contributed to night sweats, hot flushes, joint pain, some hair loss and some short-term memory ‘fogginess’. The side effects of the oophorectomy have been more significant than those from my mastectomy. However, as the years have progressed, these symptoms have lessened and I have also become accustomed to them, so they seem less pronounced now days.
During my diagnosis and treatment there were certainly down days where I found it hard to be myself, but in general I handled everything well mentally. I am generally a very positive and upbeat person and I tried to remain so during my treatment. I also had young children at the time and didn’t want this to impact or frighten them. I felt somewhat relieved that the cancer had been found early and could be treated, I had always had a sixth sense that I would develop breast cancer due to my paternal history (even before I found out that the family carried the gene) so the fact that it was found early was somewhat of a relief.
My family, particularly my husband and parents/sister, were amazingly supportive. They all stepped in and helped. They nursed me through my recoveries post-surgery and kept my spirits up. As my children were young, we kept things upbeat at home.
I would say my closest relationships were strengthened through my treatment and recovery and I am much more appreciative of life now. I try to make moments count, I try to worry less about cleaning the house, work, and things that I have no control over. I try to spend more time with my family and children and appreciate them more.
Initially the hardest part of my experience were the changes to my body – the DIEP recon, the fact that I have no feeling in my breasts, that my nipples are not real, and that I have no ovaries or tubes. But the side effects of Tamoxifen and surgical menopause have also been hard at times, particularly the brain fogginess which affects me at work. I have to write everything down now, so I don’t forget things and I often forget names.
What lesson have I learned, as a result of my breast cancer? That life is to be lived, that moments with family and friends are the most important and that work, cleaning the house, and all those superficial things are not the most significant things in life. I also learned that a breast cancer diagnosis is not the end, but often the beginning – it’s the beginning of a hard road to recovery but also the beginning of a new way of looking at life, if you let it be, and can make you appreciate what’s important.
To any woman newly diagnosed, I would tell them that I know it’s scary when you hear those words and that you have to embrace both the good days and the bad and put trust in your medical team. Trust the treatment plan that YOU help to decide on (because YOU must choose the options and be comfortable with what you have chosen), and trust that when you come out the other side you will be amazed by how strong you are, what you have faced and how powerful you feel.
I would also tell them to accept all help that is offered – accept meals from friends, allow them to babysit the kids or fold the washing, they want to help and this is their way of showing that, so take them up on it. And finally, you don’t need to be super woman – cry when you need to, laugh when you can and let people help you through it.
Lisa – 12 years post diagnosis
“It’s amazing how such a traumatic time can actually lead to great personal growth and a re-evaluation of what is actually important in your life.”
I was diagnosed with breast cancer in 2008, I was 30 and breastfeeding my 8-month-old son at the time. A painful lump appeared in my breast and at first, like all new Mum’s, I thought it was a blocked milk duct. However, an ultrasound and core biopsy confirmed that it was in fact an aggressive stage 3, triple negative tumour. My initial surgery removed a 5.2 cm tumour however a sentinel node biopsy identified two positive lymph nodes, so I had further surgery, a mastectomy and axillary clearance, two weeks later.
My post-surgery treatment consisted of two different chemotherapies, dose dense AC chemo and 12 weeks of Taxol, which was then followed by 5 weeks of radiotherapy. Having a baby at diagnosis made life incredibly difficult, for my husband and myself. We relied on friends, family and especially my mother in law, to support us by caring for our little boy, throughout my treatments and subsequent surgeries.
My surgeries since diagnosis have included a prophylactic mastectomy, reconstruction with expanders and implants and another breast reconstruction in 2016. I also had my fallopian tubes removed and an oophorectomy at the age of 38.
Luckily, I don’t feel like I have any lasting physical side effects from my breast cancer. But cancer did significantly impact my emotional and mental health. The fear of my cancer returning, and no one being able to tell me that everything would be okay, alongside navigating the decision to have risk reducing surgeries, as I was BRCA1 and 2 positive, left me terrified and anxious.
I remember fearing my oophorectomy and the resultant surgical menopause, but at the same time scared of not having the surgery and then getting ovarian cancer, like my Mum who passed away in 1994.
Counselling, peer support from other cancer survivors (through Pink Hope and the Cancer Council) and looking after my physical health by walking, joining a gym and eating well, all helped me deal with those fears and the anxiety they created.
I also had to wait at least 3 years before considering having another child, which I did 5 years after my diagnosis.
But I know that breast cancer has made me a strong and resilient person. I like to create as many happy memories with my family as I can, we go on holidays and family outings at every opportunity. We even bought a caravan 2 years ago and try to go away every school holiday and weekends. I also have made amazing friends through Pink Hope.
What lessons did I learn from breast cancer? You are stronger than you think! I also found that not looking too far ahead during my treatment a helpful way to deal with anxiety. Concentrate on taking everything one day at a time, I would have been too overwhelmed if I’d focused on all the decisions and surgeries I had to have. I would also say that it is important to find a medical team that you trust and feel comfortable with.
My message to anyone newly diagnosed with breast cancer is to have hope! Your treatment won’t last forever, and you will get your life back, albeit with a new normal, you will be stronger as a result and life will be even better than before. It’s amazing how such a traumatic time can actually lead to great personal growth and a re-evaluation of what is truly important in your life.
This article was sponsored by Astra Zeneca and developed independently by the team at Pink Hope in consultation with medical experts and members of the Pink Hope Community.