Spare Me The Doom and Gloom

This morning a friend posted a great article about researchers finding a new biomarker for triple negative breast cancer. Like all reports of research breakthroughs, this is happy news. Each day we’re closer to a cure. Here’s a link:

http://www.medicalnewstoday.com/articles/297646.php

This is another step forward but I also note that this article opens with the paragraph we see all the time. It’s this, or a version of it:

‘Triple-negative breast cancer is one of the most aggressive types of breast cancer. It has few treatment options, making the prognosis poor for affected women.’

Actually, in many cases it responds well to chemotherapy, surgery and radiation (excuse me, but aren’t they ‘treatment options’) and the average five year survival odds are 75%, which is SO much better than many other types of cancer, such as melanoma or lung cancer.

I can appreciate that there’s a couple of things going on here. Firstly, researchers keen to attract funding are sensibly using emotive language to generate interest. Secondly, journalists are after an attention grabbing headline. The use of this language to describe triple negative breast cancer is now so prevalent that you’ll find it at the start of almost any article on the subject.

So let’s take a look at the facts.

The ‘more aggressive’ description is accurate. It’s also the reason that many of these cancers respond so well to chemotherapy. It’s now common for triple negative patients to be offered chemotherapy before surgery. There are several benefits to this approach. ‘Triple negative’ is a description of a group of cancers rather than a single cancer. What they have in common is the absence of the three known receptors, oestrogen, progesterone and HER2. But research is already starting to tease this single category out into several sub-categories.

This matters because what works on one person’s triple negative breast cancer might not work on another. Having chemotherapy first allows doctors to see whether or not a particular cancer is going to respond to chemotherapy.

Having chemotherapy first is not usually an option for slower growing breast cancers. Triple negative, on the other hand, achieves a pathologically complete response in around 40% of cases (and this continues to improve with newer treatments). That means your tumours are completely wiped out by chemotherapy.

Even in cases where there’s only a partial response there’s evidence of improved survival rates. In my case, three of my four tumours were gone by the time I finished chemotherapy. So when I read ‘few treatment options’ I get a little annoyed at the doom and gloom. Recently diagnosed people read this stuff and panic. I know I did.

Yes, these cancers are more aggressive, but when it comes to chemotherapy that’s actually an advantage.

There are no ongoing adjuvant treatments for triple negative breast cancer. Those with other types of breast cancer are offered medication that significantly reduces the risk of recurrence. These treatments have been so effective that the five year survival statistics for other forms of breast cancer come in around 86%. These figures improve every year as the impact of new and better treatments affects the statistics.

Remember, you can’t quote five year statistics until you’ve waited five years. What this means is that today’s numbers are already five years old. The other important thing to remember is that the only reason they stop collecting data after five years is because it becomes costly and more complicated. The older we get the more likely we are to die of anything at all. I’ve met people who think that the five year cut off means they are not likely to be here in five years so this is an important one to understand. It’s just the end of the data collection and has no impact on your survival.

If you’d been diagnosed with a hormone receptor positive cancer (oestrogen or progesterone) or a human growth factor positive cancer (HER2) then you would be offered one of the newer medications. These include hormonal therapies, such as tamoxifen or aromatase inhibitors, or treatments that target HER2 receptors, including trastuzumab.

There’s currently research into whether or not tamoxifen might be effective on triple negative, but otherwise these medications are not available to those diagnosed with this group of breast cancers.

This appears to be the reason for the description ‘few treatment options’ but it would be more accurate to say ‘Triple negative breast cancer often responds well to chemotherapy, surgery and radiation but there are currently no available drug therapies that improve long term survival, as there are for other cancers.’

The ‘poor prognosis’ tag reflects the lower five year survival rate but I think calling 75% ‘poor’ is a bit of a reach. If you had three chances in four of winning the lottery, wouldn’t you want a ticket? That’s what 75% means. Until the last two decades or so, a triple negative diagnosis was a virtual death sentence. In that very short time our odds have improved significantly.

Five years is also a point where one of the advantages of triple negative breast cancer kicks in. Having survived for five years we are much less likely to experience recurrence than other types of breast cancer. This is very good news.

I’ve made this point about statistics before but I think it’s worth restating. Statistics are about averages across an entire population. I am not a statistic. You are not a statistic. Every single thing you can do to improve your health and wellbeing improves your personal survival chances.

And that brings me to my biggest issue with this type of headline. Having recently seen the movie The Connection: Mind Your Body, I am convinced of the significance of a whole range of ‘mind-body’ approaches when it comes to living well after cancer. Yoga, meditation, reducing stress, mindfulness and a range of associated complimentary treatments are now proven methods for boosting our recovery and maintaining our good health.

Headlines that tell us we’re facing a ‘poor prognosis’ from an ‘aggressive cancer’ with ‘few treatment options’ have the potential to undermine our treatment and our recovery. Accuracy about the facts is not just about good journalism, it’s also about giving patients something that potentially contributes just as much to our well-being as any new wonder drug.

Hope.

Alternative Therapies

I’ve had a few questions about alternative therapies during my treatment, and a few people insisting that I was crazy for trusting mainstream medicine. I decided to go with something that was evidence-based and with measurable results. Yes, there’s no guaranteed cure for cancer but mainstream medicine still provides you with your best possible chance of beating it.

When it comes to alternative therapies, I’ll now be sending people a copy of this excellent article:

http://www.theguardian.com/commentisfree/2015/mar/03/what-do-doctors-say-to-alternative-therapists-when-a-patient-dies-nothing-we-never-talk?CMP=soc_567

Such a worthwhile read. Please take the time.

Here’s the last few paragraphs just to give you a taste:

The community practitioners who are best at checking in with oncologists are physiotherapists, palliative care nurses and general practitioners. They seem to have no qualms about sharing doubt, seeking advice and negotiating compromise.

But the point of many alternative therapies seems to be in their secret powers of healing. I know it’s often said but I honestly don’t consider arrogance a good explanation for why oncologists and alternative practitioners don’t talk. I would, however, say that dismay and distrust feature heavily. As does the troubling realisation that a doctor can face reprimand for inadvertent error but an alternative practitioner can get away with intentional harm.

This is not a reason to excuse the former but to regulate the latter. Perhaps this would make it easier to follow the advice that doctors need to familiarise themselves with the various forms of complementary and alternative medicines. It is conceivable that some worthwhile measures are tainted by the same brush as a lot of fraudulent ones.

Health literacy moves at a very slow pace. The alternative health industry, worth many billions of dollars, marches briskly. It will always attract unguarded patients who will cling to the faintest promise of recovery without associated harm. Whenever money changes hands and the premise sounds too good to be true, the motto remains: Caveat Emptor.

Indeed. Caveat Emptor is latin for ‘buyer beware’, in other words, the onus is on the individual to do their own checks into the legitimacy of any alternative treatment (and any mainstream treatment for that matter).

Unfortunately the internet is full of people happy to take your money or denigrate medical professionals.

I’ve said it before; I wish everyone giving out specific medical advice was held to the same standard of accountability as doctors.