News Report / Profile
Living daily with cancer - the testimony of Sandra Lucas
I found her at the CHNL Centre of Clinical Investigation/ Santa Maria Hospital, Oncology Service Trial Group, a project integrated at the Medical Academic Centre of Lisbon (CAML).
Sandra Lucas is 39 years old, she came to work in Santa Maria in 2013 as the Coordinator of Clinical Trials for breast cancer. Tall and cheerful, her presence is noticed making her strong and contagious.
She went to Santa Maria precisely when she came across her illness. With a young daughter and having suddenly arrived at the end of her previous job at ASAE, she came to an interview to assess if she had the right profile to be part of the Clinical Trials Group of the Oncology Service. She was determined and said she was starting a new path in her life and that the project motivated her in every way, her competence was diagnosed and she stayed.
She believed she had a curative cancer and that she belonged to the 70% of cases of breast cancer that find a cure. But in the blink of an eye, that reality collapsed. She relapsed as the cancer left the organ of origin. Diagnosis: metastatic disease, stage IV. Sandra now became part of the 30% group.
The first time she was confronted with this was 6 years ago: her daughter Madalena was 2, she had stopped breast feeding the year before and because her right breast milk dried, she ended up breastfeeding only from her left breast. This made her lose critical spirit of breast symmetry, and when she felt an odd volume it never seemed completely unusual to her, "I thought it was a poorly healed mastitis." Associated with the fact that she breastfed and because she had no genetic ancestors or risk factors, she never thought the disease would come knocking on her door. One day in the shower, she remembered to squeeze her nipples to see if there was leftover milk, and a trickle of blood came out. She quickly went to visit her obstetrician, who referred her to imaging for a breast ultrasound and a mammogram that showed evidence of a strange mass. A biopsy followed. From that moment until she received a call with the exam results was a short period of time, eight days. She had invasive ductal carcinoma. She had a treatment plan that included Chemotherapy Surgery and Radiation Therapy. Four months after finishing all her cancer treatments, she noticed a spot on her skin, on the chest wall.
They still tried antibiotic treatments, hoping to kill what they hoped was an infection, but a new biopsy would show that it was a metastasis of breast carcinoma, and a ganglion in re-staging in the contralateral axillary lymph.
Later, with a new mass on her right breast, she realised that she had disease progression, this time to her other breast.
The illness had returned to show her it wasn't giving up, and her ability to fight persisted in the same way.
She says smiling, if there's treatment then there's nothing to be afraid of. But even if there weren't, there would be no reason to worry because it would be a waste of time, precious time that should be spent on better resources. She sees cancer the same way she sees being let go, or the end of a marriage, and she says many time "these are situations that life hands us so we can develop tools."
When we finished our interview, Sandra went to another session of chemotherapy. She says she is with family because when she walks down the stairs of the Hospital, where she also works, she comes back because she really likes working and still has the spirit to do it. Chemo can be either oral or injected depending on the treatment. However, in a curative context the toxicity isn't as important as for a chronic patient, who shouldn't receive as much toxicity in order to extend the therapeutic lines for a longer period of time. Sandra is one of the chronic cases. Every month, she goes in for tests to assess the toxicity of the drugs in her body and to anticipate progression of the disease. Although apparently under control, she has already had seven different lines of treatment to be able to dominate the cancer.
She has gone through all stages this type of illness causes that no one can imagine unless they have gone through it. Sandra allowed us into her life in a more profound way by talking about the entire process of living with cancer. We talk about everything, without apologising for the questions or the words uttered.
How does one receive the news of having cancer?
Sandra Lucas: Nobody is ever ready to hear that. But then we can choose how we are going to look at life's adversities. As a victim or a way to grow. I picked the second option. At the time, I panicked and of course in the beginning I allowed myself to cry because I knew it wasn't good news. I then found a book that said, "from medication to meditation," and I thought it was what I needed because that's where I was, and why? Because I am responsible for myself. The main message was that a person with an illness can be healthy and that another person without the illness may have no health at all. Thus, appealing to use health to recover from the disease. I felt healthy and it made all the sense in the world. Now... I must say, it was a shock at first.
What comes after the diagnosis?
Sandra Lucas: They called me in for a Breast appointment, breast surgery and there I was told I had an invasive tumour and that the ganglion that had been submitted for biopsy indicated I had metastases. Because the tumour was 06.7cm, I would first start with neoadjuvant therapy, meaning, chemotherapy before surgery, to reduce the size of the illness. All of this to prevent the surgery from being so invasive. After surgery came radiation therapy. But in reality, I was already decided since the beginning that it was going to be radical mastectomy. And that's the way it was. I had a modified radical mastectomy. I did all the treatments and was ready to go on with my life with a story. But the illness came back…
Because you were part of the 30% that the disease could relapse?
Sandra Lucas: Exactly. But I still had hope that because it was so close to the mastectomy scar, it was a local recurrence. Following the imaging re-staging, to see if the disease was anywhere else, I went for a PET (Positron Emission Tomography, a nuclear medicine imaging technique that uses molecules that include a radioactive component), and realised my illness was systemic. It was in a ganglion of the contralateral axillary lymph and on the skin and because my tumour subtype has a very high proliferative index, I had to undergo chemotherapy again.
Let me see if I understood what happened to you. You researched clinical trials for breast cancer has the perversion of having a disease that she technically knows backwards... Was the excessive amount of information your biggest enemy?
Sandra Lucas: Not in my case because I need to know it so that I can feel better, that allows me to deal with everything better. And despite trusting my doctor, I don't hold responsible for my illness. I also feel responsible, everyone has their part. I think a patient's literacy, knowing what happens to his/her diet, the fundamentals, the therapies, brings them a certain peace. Which doesn't mean they lose faith or want to become an outlier, and seeing that there are studies with a certain heterogeneity because a patient may have a disease that manifests itself in one way and in others in another and each patient is an isolated case.
Were the biopsies tough?
Sandra Lucas: (smiles) They are a little painful, you can have anaesthesia, depending on where you do it. They hurt physically and morally. Physically because it feels like a harpoon is going to get a bit of our flesh and create a scar. Morally because then comes the wait for news and that brings a silent pain.
What happens after a biopsy that in your case didn't come bearing good news?
Sandra Lucas: There is a multidisciplinary meeting of the breast, composed of several breast surgeons, an anatomist-pathologist, an oncologist, a radiologist and a radiotherapist; who discuss among themselves the biopsy and imaging examinations, the best strategy for the treatment of the various areas we are going to intervene. Depending on the patient and the type of cancer, the treatment order is different as well as the medication and dosages. In my case, they decided I should start with chemo. At that point anything they said was hope and I did everything as they suggested. That means the first thing I had to deal with was my hair falling, looking different, I was confronted with my fears. When we talk about chemo it seems like a big word and the worst thing the world, but it isn't. I've done chemo for the past six years and here I am normal and nobody would've guessed it.
What came after chemo?
Sandra Lucas: Surgery. I had a mastectomy. I needed psychological counselling because I was resistant at first, I thought that because I was very cheerful, I didn't need any help. But I accepted help from a psychologist, as a preventive measure, because I was somewhat afraid of confronting my breast asymmetry. She was a great help because dealing with our bodies isn't easy, and I learned it is a great vehicle. So I had to get used to thinking I was a soul with a body, but it's only a body, a personal means of transportation.
Does it help to have some type of belief, or faith, in whatever sense?
Sandra Lucas: It helps a lot because fear takes over our life and we become so afraid of everything that we even become afraid of not believing in anything. And then we start looking for signs to hold on to something, until we realise we have to believe in ourselves. I think everything ends up flowing if we surrender; that means not being in a fight. We have to accept it, it is an achievement of time and of ourselves. We learn to live on an everyday basis and value other things. At this phase, where I was left without a breast, it is also important to talk about the huge support I received from my husband and my daughter, of the unconditional love that supported me. What I always felt with him was that if I went to a wedding bald and in my pyjamas, he would make me feel like a princess.
Were other women lucky to have somebody like that next to them?
Sandra Lucas: Not all of them have the same opportunities, but it is important to say that these are the factors that make it easier, which doesn't mean that if I didn't have them, it wouldn't be the same way. We have to be the main characters in our story and be involved in the different challenges it gives us.
The essentials have to be on you, is that it? And in other women too.
Sandra Lucas: Exactly. We have to be responsible for ourselves, we have to roll up our sleeves and see the way. We have to try not to let our angry side take over us, we shouldn't be hurricanes just because we're upset. We all have the sun side and the shadow side and it's in the shadow that we should look for the light.
When were you able to look at yourself in the mirror after having had surgery?
Sandra Lucas: One of the things that happened to me was that, if, on one hand, I didn't want to look in the mirror, on the other I didn't have what, supposedly, killed me. I felt the worst had passed. Surgery is really important in the oncological process because it takes away something that is bad; it's taking out the tumour. I remember being scared of looking in the mirror, but on the other hand because I had breastfed, I no longer had perfect breasts. So I tried looking at it on the bright side: one is gone and, when I have reconstructive surgery, I'll have breasts like before. In my case, because I was going to have radiation therapy and had to rest my skin, I didn't have reconstructive surgery. Then, because I had a recurrence in the skin, I ended up doing nothing, because I value life so much more than aesthetics. And some time afterwards, it was confirmed that I had cancer in the other breast; I had to have a new mastectomy.
(Sigh) Uff ...
Sandra Lucas: There's nothing wrong. Look at things on the bright side. I would be able to use whatever prostheses I wanted and symmetrically because they were the same. Aesthetically, I'm happier this way, because all the processes we do decrease mass and that causes even more asymmetry. I only had to buy two prostheses alike.
And did you have to go through the same treatment process?
Sandra Lucas: No, this time it wasn't the same because, in reality, my illness had spread from local to systemic, meaning, metastatic disease. Therefore, the treatments didn't have a curative purpose, as the therapeutic strategy is based on a different purpose.
Do scars weigh on us throughout the course of our lives?
Sandra Lucas: With this disease everything is relative, even our bodies. We spend our lives being with "perfect" and with our social beliefs, the dreams our mother has for us, the dreams of our religion, of school, of society... This gave me the opportunity to see my own dream and understand that the body doesn't have that much impact on my life. The scars don't worry me because they're part of my story.
How do you tell a daughter, who is also a girl, that mum's body is not quite the same as the body she will one day have?
Sandra Lucas: When this started, Madalena was two years old and spoke English so she wouldn't understand but she started understanding everything and one day she looked deep in my eyes and I saw that she was scared and knew that something was going on and that I wasn't trusting her. So I sat her next to me and told her I had a "boo-boo" in my breast and that I had to remove it. And she just simply asked if it was going to hurt. I told her it wasn't going to hurt at all. When this happened I thought I had to prepare her for my hair loss and so we set up a hairdresser at home. First we shaved dad's hair, then she cut her own hair and looked like a mop and then we did mine. And then we decided I didn't look good that way so we went looking for doll hair. And I started wearing a wig.
You chose to wear a wig, right?
Sandra Lucas: Yes, because at the point we're very weak and looking at others, even if it isn't castrating, it is of pity and we suffer so much because of it. But when we can stand up and put a nice scarf on and talk about it, then we can look at the situation in a different way.
Madalena dealt well with you not having hair?
Sandra Lucas: Beautifully. On the first Mother's Day, I had absolutely no hair and we had a party at the school. I got there and saw a t-shirt rack and realised there was one for each other, you have no idea... My hands were sweating and she looked at me and whispered "are you wearing doll hair?" I nodded yes and said it was our secret. You know there are a lot of fears here - mine, hers, others' that don't want to be confronted with the illness. But everything went well and I was able to put on the t-shirt without losing the wig. I learned to put on a scarf every day and match it with my necklace and I thought to myself, "you see? how great you look!" You know life is supposed to be hard work - you can give up, or stop taking care.
Did you already look at the world that way or did you need to go through this process to learn how to live for real?
Sandra Lucas: (smiles) I've always been very playful and optimistic, but what was behind that isn't what it is today. I had to do a lot of work within and find tools to deal with everything and not limit myself to taking the medication to forget what was going on. I don't take antidepressants, at all. It's my work, mental work. What I've discovered is that people run away for the wounds, from their childhood memories. Without thinking, as children, we develop immense feelings that cause us pain, such as injustice, humiliation, abandonment, betrayal and we build masks to live with them in a less painful way. Therefore, always laughing was a mask of a behaviour that defined me. Fear was at the bottom of everything, of non-acceptance. This illness was the way for me to reach my essence and today it makes me laugh in an honest way. Today, my happiness is very much connected to my accomplishment and self-love. I had to pay dearly to cry, I did therapy and I needed time to look at myself on the inside. I needed to look behind my ego, to ask questions, to confront myself with the fear of dying, for example. I needed to isolate myself to rescue myself. That was my salvation.
Are you afraid of dying?
Sandra Lucas: There is always some residual fear, but I don't have that fear anymore because I've lived as if it's always the last year, or the last month and I do exactly what I like and I'm not always putting off things. This past weekend I went skydiving. I didn't go falling. I went flying because I jumped from 5,000 meters so that I had a lot of time to fly because it takes a while to open the parachute. We were free falling for a minute and that way we are lucky to fly.
What will your life be like tomorrow?
Sandra Lucas: Just like Joana's life, because Joana doesn't know what it will be like, either. We both know what the past was, but neither of us knows what awaits us. We spend a lot of time in life thinking about the past and holding on to those memories and always thinking of the future. And the present, the most wonderful time because nothing hurts me now and I'm having a wonderful conversation with you, we give it no value. Today, I appreciate it a lot. So why should I think about tomorrow? Are there risks? Yes. But we must be thankful for today. Detachment and gratitude were two concepts I learned.
Nowadays, Sandra wears external prostheses, because her option was not to put in implants. She thinks it will attack her skin and spread the disease that at this moment is only in the skin.
Every day, she deals with her reality very well, despite being aware that things are hard. She knows that it is gratitude that gives her the realism not to live with too much expectation of tomorrow and to grasp today as she receives it.
Regarding Madalena, she keeps placing breadcrumbs in her path so that she can, on her own, follow her footsteps without needing anybody. She says "more than creating roots, I have created wings so that she knows how to fly without her mother." Discreetly she created albums with pictures of the two of them and fills in books with recipes that should stay with her. She has already written her graduation ribbon should her physical presence fail.
Sandra knows she passes on messages and examples of hope and determination and, therefore, doesn't get tired of telling her story. She works with other patients and is a sort of informal spokesperson for a group of patients, the metastatic patients, the 30% who have no curative intent, despite being treated. She explains that there aren't volunteers for metastatic disease: if, on the one hand, it never expires, on the other, patients see the possibility of their life package being reduced and time here has another value, to be managed in a more egocentric way. The stigma of those who have early breast cancer make patients winners, turns out to be overwhelming for that group where the disease returns and this does not make them losers, "just that their life package is heavier."
There is a lack of clinical trials in Portugal, so that more treatment lines can be created, the possibility of longer life for those who are sick, "even if for just 5 months." She is hopeful that in 5 years a lot will have been discovered about cancer and its forms of treatment. In the meantime, she will keep multiplying the months and playing jokes on time while laughing with it.
The time she wants to catch and walk side by side, hoping the answer will come. An answer about the cure for her body, considering the mind has played its tricks.