Terminal or chronic?

Can metastatic breast cancer be described as a chronic illness? I've recently discovered that this is a contentious topic. I've also discovered that I have strong feelings on the subject. I didn't realise until very recently that I do, but I do.

Around eight years before I was diagnosed with de novo metastatic breast cancer, I started to experience moderately severe stomach pains. Every time I tried to eat or drink, I would double over in agony and need to vomit up what I had just ingested. I went to the doctor. She prescribed indigestion medication that did nothing. But I duly waited the customary two weeks. When there was no improvement in that time, I returned to her. As my bloodwork showed that there was inflammation somewhere in my body, she ordered an CT scan of my stomach and bowels which showed inflammation in the colon. I was referred for an MRI, which is a long wait where I am from. In the interim, I developed an abscess which, left unchecked, could have caused me to develop septacaemia. I was rushed to the emergency department of my local hospital in a very bad state. I had a very high temperature and was close to passing out from the pain caused by the abscess. This resulted in my hospitalisation, where after an agonising stay and a smorgasbord of tests and biopsies, I was diagnosed with Crohn's disease at the age of 23. The eight months post-diagnosis were challenging, involving surgery, protracted daily wound-dressing and even more tests. I had to leave my final year of university in order to receive the treatment. But I never, ever felt that I would not survive. The brush with septicaemia was the closest I came to death and I didn't even develop it. With the right management, I knew that I could expect a normal or nearly-normal life expectancy. Some people do sadly die from Crohn's disease but the mortality rate for the disease is relatively low. It used to have a more bleak prognosis but in the last 50 years or so that has happily changed.

My experience of suffering from a chronic illness is one of the reasons I don't think of metastatic breast cancer in the same way. Its mortality rate is virtually 100%. The reason it's not quite 100% is that sometimes a sufferer will die of something else before the cancer gets them. The people who make it to ten years are outliers, never mind people who live past the ten year mark. Most people will still succumb within five years and sadly some of those in the first year or two post-diagnosis. If a disease is truly to be considered chronic, the people who pass away from it should be the outliers. Chronic illnesses can of course come with attendant chronic pain and I would never downplay that. It's a mental trial in itself. But there is a level of predictability to chronic illness that you simply don't get with metastatic cancer.

I know you might ask “What's the problem with metastatic disease being considered a chronic illness if it gives people comfort?.” There are a number of problems with it, as I see it. The general public already has a poor understanding of what stage 4 breast cancer entails. It doesn't help that there are too many names for it already; secondary breast cancer, metastatic breast cancer, stage 4 breast cancer, terminal breast cancer. And to confuse matters, sometimes these names are ran together redundantly, especially in the media; stage 4 metastatic breast cancer, secondary stage 4 breast cancer. You get the idea. Are we going to add another name to the mix? That fills me with a cold dread. And I think that calling metastatic breast cancer a chronic disease feeds into the misconceptions that so many people hold about the disease. It's widely thought amongst the general public that breast cancer is now a curable illness. Diverting some of the monies raised by charities towards research into metastatic disease is still a herculean task. If the notion that it is a chronic disease enters the public consciousness, won't that exacerbate the problem? “Why would I support research into chronic breast cancer? People don't die from chronic diseases!”.

There is a more upsetting thought - to me at least - to consider in relation to all this. A lady I know through an online support group astutely pointed out to me that if it was to become more common to refer to metastatic breast cancer as a chronic disease, that may compound the anguish of sufferers who succumb quickly to the disease - “Did I not fight hard enough?”, “If it's chronic, why am I now dying, only two years after diagnosis?”. Many sufferers of stage 4 breast cancer are already sensitive to the language surrounding cancer, that implies that you're one of life's losers if you die from it. I think that referring to it as a chronic disease further marginalises those who won't reach the five year mark or even the two year mark. I think for it to be considered a chronic disease, treatments would need to exist that work for everyone within a cancer subtype and those treatments should give sufferers a normal or nearly-normal life expectancy. For it to be considered a chronic disease, people surviving more than 10 years should be the norm, not the outliers. In fact, 10 years would be on the low side of survival statistics for most chronic ailments, I should think. Like with Crohn's, people dying from the disease should be the outliers. I hope this happens in the future. But to get there, we need to make sure people don't lose sight of the gravity of the disease. Calling it chronic now is a feelgood measure that may prevent achievement of the goal of seeing this horrible disease become something you can die with, not of. That should be the criterion to aim for and we are nowhere close to the day when that is a reality. By attempting to gloss over the realities of metastatic breast cancer, we could be hobbling metastatic research goals whilst making sufferers feel worse about themselves in the process. It's an own goal.

Pink Ribbon Culture - Wilful Ignorance?

My mother was diagnosed with breast cancer in December 2007 at the age of 56. It was caught early. She had felt what she thought was a lump in her right breast. A mammogram was ordered. Nothing showed up in her right breast, but the mammogram picked up cancer in her left breast. She was stage 1. She had a lumpectomy. She underwent a course of radiation. She was prescribed endocrine therapy for five years. The familiar tale of scores of women throughout the world.

My mother is a pragmatist. She knew her chances of survival were excellent but she also knew that there was a chance that the cancer might recur. We all knew actually. We were all clued in. She is still here, ten years later and the dastardly disease has not reared its ugly head again. Except in her youngest child. She will now have to witness me dying from the disease.

But what has surprised both of us since my diagnosis is how few early stage sufferers realise that their cancer can recur and possibly metastasise. My mother was aware that it could ten years ago. Where did she get this information? And why do others not know this? Has pink ribbon culture become more pervasive in the last ten years? Or was it as bad ten years ago? Was the information always there and is it now?

I was diagnosed de novo stage 4. If I was diagnosed earlier, I would want to have all the information. Are oncologists so keen to reassure their patients that they don't want to send any negative information their way? Are they afraid that the patient might be angry with them for telling them that there is a slim possibility of recurrence and metastasis? Part of the reason why I was diagnosed so late was because my general practitioner gave me false hope, telling me that it couldn't possibly be cancer in the breast of the 28-year-old sat in front of him, boobs flapping in the breeze. I wanted to hear that it was nothing. But, the thing is, it was something and him telling me otherwise didn't change that ugly fact.

There seems to be a disconnect between what patients are told and the statistics. Not everyone survives breast cancer. Not everyone who dies from it was a de novo stage 4 case. Therefore, a subset of the people who die from breast cancer were people who were diagnosed with early stage disease. These women got a nasty shock that the reassurances of their early stage days did nothing to prevent. Don't doctors have a duty to be brave and to give women all the information in a kind but firm manner? Let's give early stage women more credit. They can handle it.

The Graceless Cancer Patient

The consultant leads me into a private room at the periphery of the outpatient day ward. I sit on the bed.

"We have the results of your CT scan and I'm afraid the news is not so good."

I hold my breath. I quickly decide to ask him if it's the worst case scenario, not believing it would be and thinking that we could then work back from that. "Is it cancer?" I blurt out. He hesitates and immediately, I am cast into panic-mode.

"You have a breast mass and we see some shadows on your spine".

I burst into tears at once and wail about the mammogram that I missed two and a half years prior. I know that this is bad, very bad. My symptoms had been so bad for so long that I know in my heart that this is what I will die of. I pace the room and push the consultant and registrar away when they ask to feel the lymph nodes in my left armpit. I alternately sit and stand and pace, rambling and hyperventilating, my mind racing. I am immediately truculent and angry. That anger will remain undiluted in me for the next month.

The above was my immediate reaction to being diagnosed with terminal breast cancer 29 months ago at the age of 31. I was not brave. I was not accepting. I was not stoic. I felt so different from all the terminal cancer patients I read about in blogs, who seemed to be so courageous, pragmatic and philosophical when they received their diagnoses. I did ask "Why me?". Many times. I did feel sorry for myself. I railed angrily against my diagnosis. Why could I not deal with this diagnosis with grace like others had done? It was like I now had something else to feel guilty about, as if there wasn't enough guilt already weighing down on me. I couldn't understand how others could be so zen about having their lives cut short so abruptly.

Since then, I have slowly become more accepting of my situation. Slowly. Back then, I thought I would never enjoy anything again. But, for anyone out there who is in this place now, I can quite confidently say that this too shall pass. To an extent. Life will never be the same, and I still cry daily. But I genuinely have plenty of moments where I do not think of cancer and where I can immerse myself fully in enjoying something - a film, a play, swimming in the sea. I've realised that everyone has their own way of getting to the point of acceptance. None of these different paths is wrong. Letting out all that emotion was what I needed. Feeling sad and angry at losing my future is nothing to be ashamed of. I am a curious person and it anguishes me still that I will miss out on so much.

So, if you are newly diagnosed and you feel that you are not handling it all with grace and stoicism, realise that you brain is doing whatever it needs to in order to normalise the situation as much as it can. Don't be distracted by how others are handling it. Ride it out.

This too shall pass.

Finding My Voice

Welcome to the Crazy Cat Cancer Lady blog! I am a 33 year old (as of July 2017) woman who is living with stage IV breast cancer. The purpose of this blog is to record my musings on living with a terminal illness. I'm not sure what form this will take yet hence the blog post's title. Hola, blogosphere! o/