Cancer - no answer to 'why?'
By Dr Sarah McAnallen
"Ensure that you're in a quiet, comfortable, private setting.
Check that the patient has a close relative with them.
Establish their understanding of the situation..."
As medical students, we all remember the 'breaking bad news' lecture.
Two years ago I witnessed this being performed in a textbook fashion. Unfortunately, I was sitting on the wrong side of the table.
I was 31 and was being told that I had stage four breast cancer.
I had graduated from my GP training scheme six weeks earlier and was excited to embark on the next chapter of my medical career. However, that moment in the ‘quiet, comfortable, private setting' changed my trajectory forever. I veered suddenly onto a new and unexpected path.
Overnight I became the patient. I had a small mobile axillary lymph node which appeared overnight during a holiday with a close friend, also a doctor. I examined it, and my breasts, and couldn't find anything else suspicious. No other new lumps, skin changes or discharge.
At my age, I settled on the likelihood that it was a cyst. I thought no more deeply about the lymph node. You don't, when it's yourself. You like to keep it simple.
Weeks passed and the lymph node stayed the same - about 1.5cm in size. A precautionary breast clinic referral was arranged.
In the meantime I developed an ache in my upper back, shoulder and ribs. My lumbar (lower) spine has always been stiff but was well managed with occasional physiotherapy visits and yoga/pilates.
This new ache brought me to the physiotherapist five times in three weeks. We reasoned that the stiffness had extended upwards to my thoracic spine and that the resulting rib rotation explained the anterior pain. I had spent three nights on the ground in a tent at the 'Electric Picnic' music festival-surely that would cause back pain for anyone.
I had lost half a stone in weight that year and had dropped a cup size when fitted for a bra a few months earlier. I put this down to life stresses.
It was only the night before my breast clinic appointment, three weeks after the music festival, that I thought, "perhaps I have breast cancer and these pains are metastatic disease in my bones." It still seemed implausible, given my age.
By this stage and with more self-exam, I could now appreciate a hard, craggy area deep in my left breast - the side of the lymph node and looking back, more asymmetry. Subtle signs, yet a seven cm tumour was lying deep in the breast.
The clinic was excellent. I had my examination, and tests then returned 90 minutes later for my provisional results. Sitting in that waiting room, accompanied by my mum, with fifteen other women all dressed in gowns, I felt like a fraud - I was twenty years younger than all but one of them.
A kind-faced, uniformed breast care nurse approached us. She walked over to us and bent, taking an interest in my mother and addressing me by name. She guided us to the room in which I had originally been examined and introduced us again to same doctor. I think at this point myself and my mother both knew I had breast cancer. It was her approach. Textbook.
The doctor talked me through each step of the investigations and at each step remarked, "We were worried". The examination of cells showed C3 - often normal, but based on ultrasound and mammography, it looked more like cancer.
I only mentioned my back pains after I was told about the high likelihood that it was cancer.
Confirmation came just forty-eight hours later. A family friend who works in the breast clinic happened to be delivering the news. We were asked if this would be ok but, as my mother said, it was probably going to be more difficult for her than for us and it would bring us comfort to hear the news from a friendly face.
CT and bone scan confirmed widespread, extensive skeletal disease - spine, pelvis, right shoulder, left hip, ribs, and sternum. The good news was that there was no internal organ involvement. I was informed that what I had been diagnosed with, Stage 4 breast cancer, with bone metastases only, could be controlled for a long time. Five and ten-year survival can be good.
When working as an oncology SHO in 2008 in Galway, where the sadness of inpatient cancer ward rounds was palpable, these facts would have meant little to me. Once a person has cancer, there is always risk. Now, this information took on significant meaning. I appreciate the fact that often a ‘cure' is a legitimate goal.
The evening I met my oncologist, I got a fright hearing that we were "aiming for control, rather than cure". Two issues immediately came to mind - my sister's wedding less than three weeks later, and my fertility.
The former query was answered with the assurance that I would be able to attend and would still have my hair. The latter was answered sensitively and appropriately - no time to waste with administering hormones, which would likely worsen the disease, for egg harvesting - periods usually return after treatment in young patients like me. It took me a few days before I realised the kindness of the oncologist in answering my question as above, despite the fact that I had been told we weren't aiming for cure.
The truth is, as we were taught as medical students, patients should be given the information in a timely fashion and in a way that they can process. It took me five months to raise the issue again with my oncologist. I already knew the answers but needed to hear his confirmation.
A few years previously, during our weekly GP training group meeting, I presented the case of a patient who was to be informed that she had stage four ovarian cancer. I remember looking to the floor asking whether patients want all their news in pieces or all at once. An experienced trainee with a background in oncology answered that patients want to know and are better able to accept bad news than we think. He was right, as I now know.
When life crises strike, I believe the human spirit can expand to cope with much more than you ever imagined.
My diagnosis naturally made me reflect upon cancer patients I had treated during my career. I will never forget the young Brazilian woman I met in 2010 during my very first nightshift in emergency medicine. She was in her early twenties, studying in Ireland, and had presented with right upper quadrant abdominal pain.
A nurse alerted me to her and had given her a side room for privacy-she was alone, with a friend in the waiting room. A letter in her chart revealed that she had recently been diagnosed with stage four breast cancer. Her blood results returned with liver enzymes in the thousands.
I entered the room to find the young girl in distress. She had hard, nobbly, tender liver swelling with a large fungating breast mass. She repeatedly spoke of "fibrocystic disease", indicating that her doctor at home had often reassured her that this was the cause of an initial lump.
She had an appointment to see the oncologist in Dublin that week but, through tears, she explained that she had booked a flight home. When her pain settled, I discharged her from the ED with a script for dexamethasone. I remember feeling upset and thinking that this gorgeous girl was going home to die.
It was surreal to consider myself as someone with cancer. I had to remind myself that cancer is just a word to describe cells dividing in an uncontrolled manner. Discussing it in this manner with a friend helped to quell the fear. I remember one of the first nurses who took my bloods after diagnosis was enquiring about how I was doing. She remarked on what a shock I had had, then said, "People ask me how I am - I say, I feel fine but if you scanned me, you wouldn't know what you'd find!" I was grateful for her empathy and the sense of normalisation. After all, I looked and felt no different than I did before-it was hard to believe this was happening within my body.
I have found that being open about my disease normalises it to an extent, and eases the guilt that I feel for my loved ones who will be left behind. When the future seems overwhelming, we must remember that it comes to us all, one day at a time.
I was treated aggressively with extensive chemotherapy. The disease, unfortunately, spread further. I am constantly learning that the field of oncology is vast and complex. Currently I am maintained on palliative chemotherapy.
I have learned of many young women in their twenties who are living with, and dying from, breast cancer. In the theory of ‘survival of the fittest', I always considered myself to be one of these so-called ‘fittest' people. There is sometimes no explanation, no answer to ‘why?', or at least, not yet one discovered. There is no justice in illness.
Following diagnosis, I received many kind messages and cards, each one of which I remember and treasure. The thing about studying and working in medicine is that it has offered me an amazing group of close friends - each one kind, caring, empathetic and unfazed by things that I might say. I have several very good friends from outside the medical profession too. I am very lucky.
I also have doctors in my family. After my discharge following a mastectomy, I mentioned to my mum that I was frustrated and upset by feeling so tired. "Fatigue is an awful symptom" was her reply. This took a great weight from my shoulders and I remember thinking that she was a great GP. The empathy and understanding helped ease my frustration and helped me to feel better.
Just because we as doctors study illness does make us immune to it. I have experienced both sides of the coin.
I would advise GPs that next time a patient comes in to you for what turns out to be reassurance and direction, don't see it as a waste of anyone's time. It is time spent wisely and can be therapeutic to the patient.
Regular self-examination is the only way for people, young and old, to pick up change. Indeed, patients within the breast screening age group should know what's normal for them and report change. Being breast aware saves lives.
Throughout the course of my diagnosis and treatment, I have asked questions. How the question is answered, and who answers it, makes a huge difference to the impact it has on me. It is not necessarily the answer itself.
[Posted: Tue 20/10/2015]