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.

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3 thoughts on “Spare Me The Doom and Gloom

  1. Positively & beautifully put as always 😊
    I think 75% is fantastic…. when I was at school a mark of 75 was as good as winning the lottery as far as I was concerned 💖
    Happy days ahead 🙆💝

  2. Thank you very much for this post. When I got my triple negative diagnosis everything I read online and in print filled me with fear because it ALL started out the way you detailed here. I am one and a half years out from DX now and finally starting to feel positive about my prospects. I am bookmarking this post and will come back for another read when a need a boost. Thank you again!

    • Thanks so much for your comment, Jacquelyn. I wrote this with my own reaction to those articles in mind. This is the post I would have liked to have read when I was first diagnosed. I’m so glad you liked it. Meg X

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