Though a little neglected in recent years this blog continues to occupy my thoughts and its purpose, to share information about the experience of breast cancer and the things a HER2+ diagnosis entailed hasn’t faded.
When I began writing everything I read suggested the outlook for people who are HER2+ remained doubtful. Despite best efforts to think otherwise, I sometimes doubted I’d see the 2020’s. Hope and doubt coexist a little more regularly these days but being carefree isn’t something I imagine very often.
Light follows darkness though and part way through my training I’m already working with people who have cancer. This path, from patient to advocate and more recently as advocate and carer, was unintentional yet somehow feels right. A way of putting unwanted experiences to use, to give something back for as long as I’m able.
It brings other unexpected opportunities too, to research and attempt to write formally about the experience of breast cancer patients as part of my academic nursing development. Over the coming months I’ll be looking at themes that come up in breast cancer blogs and hope to identify topics that rarely gain attention in mainstream media or formal writing but impact us greatly as breast cancer patients before, during or when we find ourselves beyond the realms of current treatments and what they offer for us.
Please let me know if you’d like me to read your blog, specific blog posts or if you have themes you think it would be useful to explore. I am new to this kind of research and would like to raise our voice, as well as shedding light on the things that affect us greatly but still fail to receive the attention they deserve.
Our ability to research pathogens and continually develop drugs or treatments that thwart them is likely to have changed the course of human life on Earth. Without medicines it’s probable our numbers would be severely curtailed through regular outbreaks of communicable diseases. Many of us may never have survived beyond childhood. In the mid 1800’s around 15% of infants died in their first year and many more before the age of five*. Our quest to cure illness and preserve life has, for many years, been founded on our ability to design and conduct well formulated scientific research.
Roll forward about 180 years and we’re still conducting valuable research, advancing the discovery of new treatments or more effective drugs for the control of human illnesses, even if we remain unable to cure many of the ailments that afflict us. We appeal regularly and insistently to the public at large to help fund gargantuan efforts of scientific and humanitarian endeavour because resources are scarce and without them we might never find a cure.
As a scientist at heart, the importance of research isn’t lost on me. Neither is the dedication of the people who make it their life’s work to find a breakthrough that might just deliver the elusive cure. The process of research is a huge commitment; intense, time consuming and expensive. Resources involved run to millions of dollars yet recent articles suggest anywhere between 95 – 99% of Alzheimer’s and cancer research fails when tested in humans. It’s a high stakes situation for everyone, scientists, funding bodies, those newly diagnosed and those now desperate for new drugs because all else has failed them.
In the U.K. the situation becomes even more desperate when patients are prohibited from accessing new, proven drugs classified too expensive for NICE (the National Institute for Health and Care Excellence) to support. In reality this non-departmental public body ought to be called the National Institute for Health if it’s Cost Efficient because cost plays a major role when evaluating the provision of new, breakthrough drugs. The postcode lottery NICE was supposed to eradicate has been replaced by a national lottery where no-one wins when a new drug is deemed too expensive. At this juncture I’m left wondering whether any of the money I’ve donated to medical research over the last 25 years has achieved anything worthwhile. Continued rationing of life changing or prolonging drugs makes me suspect my small contribution may have been better invested in items to support those undergoing existing treatments.
Just recently news of significant research grants includes the statement “hope this work could improve survival rates.” We all hold on to this hope but hope alone isn’t enough. Drugs evaluated as clinically effective are rejected by NICE if the price is too high. Nivolumab is one example, there are many others. So if NICE continues preventing access to new treatments and patients can only receive older, cheaper drugs, what real term improvements can we expect to see? Have we forgotten Articles 3 and 25 in the Universal Declaration of Human Rights and if so, should we continue donating to clinical research or would our donations be better spent providing respite or hospice care? Once upon a time I’d have argued medical research was money well spent, but as more and more of my friends get caught in the fight between NICE and the Pharmaceuticals my thoughts become increasingly conflicted. When life is slipping away, it seems better care for the dying is more important.
*In Western societies
There are few miracles in Cancerland. Many of today’s treatments are founded on surgeries, chemo and radio therapies that have been around for decades. The concept of mastectomy has existed for centuries, though thankfully surgical practice has improved significantly in that time. Cancer research is resource intensive, costly and for every positive advance there are many more that fail to deliver useful results.
As a recovering cancer patient, thinking about all of this is a daunting prospect. So many race for the cure because no-one wants their life cut short by cancer. Yet the cure continues to elude us and every day there are tears and condolences as more of our number depart the human race. This, all too often, is the stark reality of Cancerland. It makes the psychology of cancer equally as challenging as the disease itself.
Science has not given up though and for those of us affected by this odious illness, from time to time there are breakthroughs, stars of wonder that shine a ray of hope into what might otherwise be a very stark world. Since being diagnosed as HER2+ I’ve hunted down as much information as possible about the ramifications of my particular cancer subtype. I am the kind of person who needs to know what she’s up against and until recently it painted a very challenging picture. More aggressive, more difficult to treat and more prone to early metastasis are not the kind of facts I hoped to discover. Without the advent of Herceptin my consult had said our initial conversation, the “yes you have cancer” one, would have been followed by “and we’ll do as much as we can but the outlook isn’t good.”
Unable to resist the urge to undertake my own research, I quickly discovered that members of the HER2+ community seemed to be dying at an alarming rate, even if their cancer was diagnosed early and they’d undertaken aggressive forms of treatment. In 2012 a long knife skewered my heart. The “yes it’s cancer” part was unpleasant but it wasn’t a complete shock. The HER2+ part was a twist of the knife, unknown territory which soon became a gargantuan challenge. Though my treatment is over my quest for research did not subside and as we approach Christmas 2014, the season of peace and goodwill, a small star of wonder shines for those who are HER2+.
The survival benefits of Herceptin have been assessed in long term research, the first of its kind because Herceptin is one of a handful of cancer treatments that haven’t been around long enough to know exactly what the outcomes might be. Earlier this month the Journal of Clinical Oncology published a study that found Herceptin improved 10-year survival from 75 percent with chemotherapy alone to 84 percent with combination therapy – chemo plus Herceptin. The results also established continued improvement of disease free survival – the addition of Herceptin has seen 10-year disease free survival rates increase from 62 percent to 74 percent. As someone affected by HER2 these increases in 10 year survival and 10 year disease free survival are encouraging. They begin to shine a ray of hope in a landscape where hope is desperately needed – 74% isn’t good enough in my opinion but it sure as hell beats less than two-thirds.
It saddens me that, for my friends with metastatic breast cancer, everyone who is stage four at diagnosis, anyone who isn’t HER2+ and all those living in the wrong geography or an insufficient income bracket this discovery offers no comfort. It’s a small breakthrough with relevance for 15-20% of those with breast cancer. I’m part of that population yet there are no guarantees it will be of help to me either. Breast cancer is like that, no-one knows which straw they’ve drawn and reoccurrences can happen well beyond the 5 year “all clear” period.
Uncertainty and unpredictability are part of the fabric of Cancerland and somehow we learn to adapt to that, to cope with an outlook that’s permanently cloudy, but even for the most optimistic among us this becomes psychologically wearing. Coping is marginally easier if the cloudy outlook is perforated by at least one small star of wonder every few years – it seems that Herceptin may well be that kind of star.
Someone I used to work with died last week. We weren’t close and hadn’t kept in touch but it was still sad and shocking to hear the news. He was young, super fit and healthy just a couple of years back when we worked together. A clean-living triathlete.
When I found out I thought maybe he’d been involved in an accident, some kind of traffic collision. In the city it’s one of the more common causes of premature death. Or maybe one of those completely out-of-the-blue heart conditions, the kind that take people during marathons and football games. In the moment between hearing the news and hearing what happened, an accident is what I expected to hear.
It wasn’t an accident and what I’m about to say will sound strange. In spite of the trauma, an accident might have been easier.
He was diagnosed with lymphoma in July and spent the past few months in a hospice. Nine months from diagnosis to death. His world and that of his family undone in the space of three seasons; autumn, winter, spring. His wife and young daughter must be devastated and I can’t help thinking it’s really sad. Sad for him and sad for them. They’ll have some gruelling memories to deal with before the good ones find a way back in.
24 hours ago one of our news channels made a big deal of cancer survival rates. The report was positively beaming about 50% of people in England and Wales now living for ten years post-diagnosis. Cancer no longer needs to be seen as a death sentence is what the story said. The same story reported a one in two chance of living (dying) within 10 years of diagnosis as a vast improvement on the 1970’s position. Back then 24% could expect to live for 10 years.
News of a co-workers death from cancer in less than year just one day after this inappropriately upbeat national TV story seems hopelessly ironic. I don’t deny the numbers reflect some progress for the better, but I can’t shake the thought that creeping from 24 to 50% ten-year survival during the course of almost 45 years is extremely slow. Life threateningly slow. The kind of progress that earns a ‘must try harder’ comment on an end of term report.
It wasn’t an accident that we invented the large hadron collider, wi-fi, hybrid cars and protease inhibitors in the last 25 years. We verified the existence of dark matter and down-graded Pluto to a dwarf planet too. But when it comes to cancer we’re supposed to be pleased by a 50% ten-year survival statistic that’s taken 40+ years to achieve? It’s a statistic that means 50% of people, including my ex-colleague, still can’t expect to see their kids grow up, have kids of their own or spend time with their grandchildren.