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Secondary Breast Cancer Awareness Day: Why we need to know about this breast cancer middle ground

Ismena Clout

Breast cancer 2 300x199 Secondary Breast Cancer Awareness Day: Why we need to know about this breast cancer middle groundThe 13th October is Secondary Breast Cancer Awareness Day, a day dedicated to spreading the word about the incurable side of the disease, the side where there are no survivors.

Every year in the UK around 12,000 women and 75 men still die from breast cancer and these are statistics that show we still have a long way to go to conquering this disease.

Sadly not only that but so many patients in the UK are now struggling to get access to the latest drugs and treatments that will give them the most precious thing left to people like us, time.

When I was diagnosed with secondary breast cancer I entered a whole new world that I didn’t know anything about and didn’t understand. I had to learn about the disease very quickly and armed with what I know now, I am amazed at my own and other people’s lack of awareness.

Yes, I knew that secondary breast cancer existed but I was like an ostrich with my head in the sand, hoping it wouldn’t happen to me. We all know the primary breast cancer journey so well that the incurable part of the disease feels forgotten. I can’t tell you the amount of times I’ve told someone that my cancer is incurable, so therefore ultimately terminal, and they will say: ‘oh, but you’ll be okay won’t you?’, or ‘oh, but I thought they had found a cure for breast cancer now?’, or ‘just fight and be positive and you’ll be fine’.  It’s hard to say that no, I won’t be fine, and even while I’m as fine as I can be, I’m still in treatment.

I was lucky enough to get into a solid and stable remission after my secondary diagnosis and stayed there for 18 months. Even then, people would say: ‘so you’re not on drugs now, then?’ In fact, I was on ever increasing pain killers, a hormone therapy and a bone strengthening treatment. While I was stable, friends got very relaxed and I kept hearing the classic: ‘but you could be run over by a bus tomorrow’. The difference is, I know the bus has left the garage with my name on it, I just don’t know when it will get to me. I’m surrounded by uncertainty.

I’m now on my fourth type of chemotherapy and people always say: ‘what, you’re still on chemotherapy?’ I actually hope I can be on as many chemotherapies as possible for as long as possible. But I know my body will get too weak to continue before I exhaust my options. Despite being in my thirties (just) I can feel my body getting weaker and starting to suffer from all the cancer, chemotherapy, pain killers and the numerous other drugs I have to take to manage the numerous side effects of the main drugs.

I hope that people become more aware of this middle ground of breast cancer, the ground between primary breast cancer and the final stages to death. The ground where we are living with secondary breast cancer, the ground where we are still holding down jobs, being mothers, friends and an active part of society. For too long I think we have hidden in the background, scared of offending or frightening people, but it’s not helped us. We need to stand firm and be counted at last.

I love my friends telling me that I’m inspirational and strong, although occasionally it annoys me. But overall any compliment makes me happy and makes me feel like I’m inspiring them in their own life and giving them hope for what they could achieve. As one of my beautiful support group ladies said: ‘you know what, we were amazing inspirational women before this diagnosis and it just took getting cancer for the world to notice’.

I keep up an active life and still work where I can. I am always hearing: ‘but you look so well’. I used to hate that, what does it mean?  I look so well – for me? For a cancer patient? For someone who is slowly dying? But I have realised there is something worse than hearing that sentence, and that is when they don’t say it! So we should always be careful what we wish for.

Sunday October 13 is Breast Cancer Care’s Secondary Breast Cancer Awareness Day.

For more information visit www.breastcancercare.org.uk/secondary

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  • richard.loe22

    Ismena, that middle ground you talk about is common to all those of us with incurable (ie terminal) cancer. And like you I get to hear things like “you’re looking well, the treament must be working” when in reality I’m feeling like s**t. But as you say, it is nice that they think we look ourselves. I agree with you though, its important to show that while we may be terminally ill we can still lead an active life, be ourselves (well OK mostly) and hold down demanding jobs. Because we’re just like everyone else, the only difference is that we’re expecting death a little sooner than them. Keep it up Ismena, and all the best!

  • Ismur

    It’s not so much that women ought to know “why” they need to know about secondary breast cancer rather than about the “how” of it. Very few women are aware of the fact that any type of invasive cancer treatment increases the risk of secondary cancers and that frequently they are metastatic. The traditional medical orthodoxy also doesn’t inform women that most often breast cancer ONLY develops into a metastatic type AFTER having received therapeutic cancer therapy (read Rolf Hefti’s e-book “The Mammogram Myth: The Independent Investigation Of Mammography The Medical Profession Doesn’t Want You To Know About”). Women are profoundly misguided about breast cancer by both the medical industry and pink ribbon organizations.


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