Vita Blog: Clearing up myths and misunderstandings about secondary breast cancer

Posted: October 17, 2014 in Round Three, Vita Blog
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Here’s my latest Vita Blog post for Breast Cancer Care:

http://www.breastcancercare.org.uk/news/blog/clearing-myths-misunderstandings-about-secondary-breast-cancer

By the time this post is published, we’ll be halfway through the fuchsia-tinted month of ‘Pinktober’, or Breast Cancer Awareness Month.

Pinktober generates mixed feelings among the breast cancer community. While it has been a spectacular success in celebrating survival and generating funding for much needed services and research, there is still very little awareness around the more deadly form of the disease: secondary breast cancer.

There’s a lot of ignorance about secondary breast cancer, so I want to use this post to unravel a few of the myths surrounding the disease.

My #sbcselfie for YBCN

My secondary breast cancer selfie for the Younger Breast Cancer Network (UK)

There is no cure for secondary breast cancer

For many, breast cancer is now viewed as ‘cancer-lite’. It’s no longer perceived as life-threatening, even though 12,000 women die from the disease every year in the UK.

Statistics released by Breast Cancer Campaign illustrate how misinformed people are about the disease. Figures show that less than 25% of Britons realise that when breast cancer spreads, there is currently no cure. Over 75% believe that it can still be cured when it spreads to another part of the body.

For clarification here’s Breast Cancer Care’s definition:

‘Secondary (metastatic) breast cancer happens when breast cancer cells spread from the (primary) tumour in the breast to another part of the body. This may happen through the lymphatic or blood system to other parts of the body. This is also referred to as metastases, advanced breast cancer, secondary tumours, secondaries or stage 4 breast cancer.’

Once the cancer has moved from the original (primary) site, it cannot be cured.

Fear

Much of the stigma around cancer is fuelled by ignorance and fear. It’s a scary disease. People don’t like talking about it because it means facing subjects most of us would rather avoid.

Whether you have primary or secondary cancer, dealing with other people’s discomfort about the disease is something you get used to. When you’re diagnosed with secondaries, people’s reactions become even more extreme.

I’ve got used to people gasping in horror. However, being on the receiving end of this type of reaction isn’t easy. If you’re anything like me, you concoct a more palatable version of the truth, the version where they find a cure and you live happily ever after.

There’s even a code of silence between primary and secondary breast cancer patients. They’re frightened of becoming one of us and we don’t want to scare them.

During a recent trip to the chemotherapy ward, a newly diagnosed patient asked when I would be finished treatment. It was her very first chemotherapy session. She was terrified and needed some reassurance. I didn’t have the heart to tell her that this was the second time I’d lost my hair, and for me treatment would never end.

The discomfort people have with talking about secondary disease can make you feel like the Grim Reaper. We are an unwelcome reminder to the rest of humanity that our time here is finite. Death is an unfortunate reality we all have to face. Yes reader, cancer or no cancer, one day you will die.

Self-blame 10690298_809828669040075_4695988971273738545_n

Before my secondary diagnosis, I knew very little about the disease. My scant awareness was limited to the knowledge of a secondaries support group in my local Maggie’s Centre. My worst fear was joining that group and I avoided any association with it. For me, even being in the same room as people with secondaries was a risky business: stand too close and you might catch it.

My ignorance about secondary breast cancer was reinforced by those around me. After losing a friend to secondary breast cancer, I was shocked when a mutual acquaintance commented that ‘She always had a bad attitude towards the disease,’ as if she’d somehow brought it upon herself. I was reassured that with my positive attitude I would never become ‘one of them’.

The belief that the right attitude can have a positive effect on your prognosis is one of the most common misconceptions about the disease. But it’s a myth we’ve all bought into. In order to be a survivor, you have to conform to the ‘smiling, battling warrior’ ideal. Those who don’t will lose the battle.

Cancer is stigmatising enough, but for those with secondary disease the stigma is even greater. For as well as failing at survival, there’s an assumption that perhaps we didn’t try hard enough to beat it. It’s much easier for people to assume that we didn’t play the game than to accept the possibility it might happen to them one day.

There’s no doubt that having a positive attitude can enable people to get through treatment. However, research doesn’t support the idea that positive thinking can have an effect on prognosis, but suggests that pressure to engage in positive thinking may add to the psychological burden of cancer patients.

Until we destroy this mythical relationship between positive thinking and cancer survival, those of us with secondary disease are saddled with the added guilt that perhaps we didn’t try hard enough.

The future

It’s not all doom and gloom. Breast cancer charities are beginning to listen and give women with secondary breast cancer a voice.

Currently only one day of Pinktober is devoted to Secondary Breast Cancer Awareness Day. However, Breast Cancer Care has devoted a whole week towards highlighting some of the #hiddeneffects of the disease. Breast Cancer Campaign is raising awareness of secondary breast cancer with their spreadtheword campaign andBreakthrough Breast Cancer is campaigning to demand a fairer price for life-extending drugs.

As well as this, Breast Cancer Care and Breakthrough have worked with hospitals all over the UK to create a Secondary Breast Cancer Service Pledge, with a focus on improving standards of care and allowing secondary cancer patients to have their say.

Breast Cancer Care  is also addressing the issues faced by younger women, when it hosts the first ever Living with Secondary Breast Cancer as a Younger Woman event in London later this month. Breast cancer is much less common in younger women (one breast cancer in five is diagnosed in women under 50) and this is a rare opportunity for those of us with secondaries to meet up.

Writing this post has made me realise that we have a long way to go when it comes to spreading the word about secondary breast cancer. My own lack of awareness was due to fear and ignorance, and it’s unfortunate that it took a secondary diagnosis to make me more aware of secondary breast cancer. Until we become more comfortable with talking about it, secondary breast cancer will remain the pink elephant in the room.

You can read more from Katherine on her own blog killerkath.wordpress.com and also on Twitter @killerkath

Vita bloggers’ views are their own and do not necessarily represent those of Breast Cancer Care or Vita magazine.

 

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Comments
  1. Anonymous says:

    You are some girl Kath – and your blog I’m sure helps many people to understand this disease better – Lots of love Lorraine xxxx

  2. natstar12uk says:

    Thanks Kath another brilliantly written and poignant blog. I hope you get a lot out of your trip to London for the Breast Cancer Care event next weekend xxx

  3. Loving your blog – you have a great writing style and are talking about such important information when it comes to breast cancer. Thanks for sharing your wisdom, insight, and experiences.

    • killerkath says:

      Thanks for the feedback and also for taking the time to read my blog! I love it when I hear from people on the other wide of world. I noticed from our own site that you’re a naturopathic doctor. Is there any advice you can offer to women like me with hormone driven metastatic disease? I’ve eaten a mainly vegetarian (some fish) diet for many years, I eat very little dairy except when I go out, I juice daily…..would appreciate any tips from over the water!

      • You’re welcome! Isn’t it exciting when someone far away finds your site?
        My advice as far as food goes is avoid as many chemicals and hormones as possible. I think moderate dairy is fine – I don’t know what the status is of rBGH or rBST in the UK. In the US, either organic or hormone-free dairy products are ideal. If you like meat, favor organic or pasture raised animals. Grass fed beef is a good source of omega-3 fatty acids. Avoid farmed fish – Atlantic salmon is farmed raised and contaminated with antibiotics and other chemicals that do not help our health. Good protein is important for immune system function and daily repair work.
        Personal care products are another source of xenoestrogens and other hormone mimickers. Read labels. Drop Dead Gorgeous is a good book to learn more about products and has recipes to make your own lotions, soaps, etc.
        Take care and I look forward to reading more from you!

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