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    Gertrude is the name we decided to call my cancerous breast hence the title of this blog. Although I had to keep my breast through chemo and radiation due to the nature of IBC - once it 'blew up' it no longer looked like my breast and I couldn't wait to get rid of it. Calling it Gertrude was a way of seperating it from myself. This main page is where I write about the general goings on that relate to Gertrude, there is another page that are more a diary of treatments etc This blog is a public blog so although I am being very honest about my battle with Gertrude I have "changed names to protect the innocent" - because everyone can see it if you write comments on the blog pages please use the same abbreviations for other family member or friends that I do. Please feel free to ask questions if you want clarification because then other people who might have been wondering the same thing can read your question and our answers.
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Real Breast Cancer Awareness Part III

Is Awareness still needed?

Yes, Yes, Yes!!

Although the New Zealand Breast Cancer Foundation includes looking for other symptoms in its breast cancer awareness campaigns now, for many years the message has been “have mammograms and look for lumps.”

As you know if you have been following me on this blog, or facebook, or twitter,  I have used this month to do a little personal breast cancer awareness campaign of my own.  I wore my t-shirts with the captions as seen in my header picture, the ‘no, they’re not real’ and ‘my to-do-list’.  I bought myself another one that said ‘I survived breast cancer and all I got is this lousy t-shirt’  and wore them to my classes and on the train and when I was out and about.  In me doing this it sparked conversations around my journey as a survivor, Inflammatory Breast Cancer,  and Breast Cancer in general and popular misconceptions kept popping up in the conversations.

I am not blaming people because I was guilty of some of these misconceptions myself before being diagnosed.  I’m just saying that I think there needs to be re-education because people aren’t taking any notice of the new awareness campaigns because they think they already know. 

The common misconceptions are as follows:

1) That all breast cancer can be ‘cured’ by finding a lump, having a lumpectomy (or mastectomy if you chose) and chemo and/or radiation and then you’ll be fine.  That if it has spread further than that it’s because you didnt take notice of the lump in time or that it is several years after original diagnosis that it reappears in other organs.

This misconception presumes that all breast cancers are slow growing.  However aggressive breast cancer, IBC included, can grow within weeks and months and by the time a lump, or in the case of IBC – other symptoms, become obvious the cancer has already spread further than the breast.  It is also the case that the lump itself may not grow that big but the cancer will spread to the lymph nodes or further afield. This misconception also places the blame on the breast cancer survivor for their ‘lack of diligence’ in not picking it up sooner.  If you are a fighter/survivor of an aggressive form of Breast Cancer the last thing you need is people making stupid remarks about the fact you should have been more watchful.  When I tell my story of IBC you can just tell perspectives are shifting in peoples minds because I also talk about there are other aggressive forms of breast cancer out there.  “Oh I thought they were all the same!  – that Breast cancer was breast cancer – (and all grew at the same slow speed)” is the general gest of comments from a conversation about this misconception.

2) that it is all about having mammograms and that if you have them when you reach the age of free screening you’ll be fine.

People are making the mistake that mammograms are a preventative tool not a diagnostic tools.  Sorry folks , by the time the mammogram picks up that tiny lump in your breast, you already have cancer.  Having mammograms will not prevent you from having cancer it will just pick it up at an earlier stage than the naked eye or feeling your breast can . 

3) Thats its an older ladies disease.

With all the publicity about the free screening programme for 45 -69 year olds in New Zealand, women are becoming complacent about it not happening to them any younger than that. – I know at 45 I was guilty of that assumption myself ‘that I was just at the early risk stage of having cancer but it happens to ladies much older than me’.  And as I had had a preemptive paid mammogram at the age of 42 – I was going to be fine.  Although 3/4 of the cases of breast cancer occur in women over 50, unfortunately younger premenopausal women’s breast cancer tends to be more aggressive.  Its funny when I tell people that I was 45 at diagnosis, the usual response is “Wow you were really young” but the fact is I am postively ancient compared to those women in their 30’s  I know that have been diagnosed. 

One of the spokespeople that the NZBCF has used this year is Helena McAlpine who was diagnosed at the age of 31, and I think using her as a spokesperson is a good idea as it shows that it doesn’t just happen to older women – our grandmas our aunties our mothers – it can happen to us.

I don’t know what the solution to the apathy to awareness is.  Is it just a case of no matter what we do younger women will still be oblivious to the risks to them?  The trouble is that is young women in fact need to be more aware of their breasts (in a medical awareness way)  – their cancers tend to be faster growing, they dont have the free screening to find lumps before they are obvious to the feel, and it scares me that they possibly wont get help before its too late.  I know the breast cancer campaigns dont want to worry women unduly but my point of view is I would rather be scared than dead. 

I personally would like to see an ad campaign next year that targets younger women, that says as a slogan ‘its not just about lumps’ and really jolts our complacency and preconception that it is only “slow-growing lumps and breast screening when you reach 45”  I know that it is aimed at only approximately 25 % of the possible breast cancer population but to my mind thats the portion that needs the most awareness done now.

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1 Comment

  1. Sheryl Mesloh

     /  October 24, 2010

    Thank you so much for your to the point writing about breast cancer and all of those misconceptions that I keep fighting too. I was diagnosed in 2002, originally with infiltrative ductal carcinoma, later in 2003 it was recognized that I also have IBC. In retrospect, I now know I had IBC from the beginning, but the first oncologist, not the surgeon ever said that to me. I’m not sure they knew what they were dealing with. Now that I have been diagnosed with my 4th relapse recently, and a struggle ensues with what to do next for me… I can’t help but wonder, if the IBC and been recognized sooner, would things have been different. It is water under the bridge for me, but the knowledge could have a powerful impact on another woman’s life.

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