If they don’t understand, do we have any real chance?

I started an iPetition which I was hoping to send to Cancer Research UK and I sent requests for support to various people that I knew.  Imagine my surprise when I had a reply from someone who is a ‘survivor’ of Early Stage Breast Cancer to basically say that she didn’t feel she could sign because I was wrong to say that ESBC can be cured.  This is part of my reply

I appreciate what you are saying about early breast cancer, but I have never seen any stats for anyone dying of early stage breast cancer.  As far as I am aware it only kills when it progresses.  The whole image of breast cancer being curable and no big deal is the one that is pushed so hard by the early breast cancer community who choose to ignore us, except as a statistic to get donations.  When the Pink community actually embraces and supports us then the public may finally get to understand that breast cancer has no ultimate cure, but they just continue to push early detection and mammograms, which can actually cause breast cancer, as the solution.

The point that those of us who have metastatic breast cancer are trying to get across is that breast cancer is not only about early stage, pink ribbons, survivors etc, but they are the ones who hog the lime light and constantly bring attention back to the fact that they might progress to having mets, when there are thousands of us who do have mets, are ignored and get c2% of the research funding, the other 98% going to early stage cancer.  As 1 in 10 people diagnosed is already Stage IV, and 30% of those with Early Stage will progress to Stage IV amd subsequently die of it I don’t see that this is a very fair share of the research funding.  If more was done to find treatments for mets and maybe really turn it in to a chronic disease, which it isn’t yet, then maybe those with Early Stage BC wouldn’t feel such fear that what we are, they may become.

I am sorry that you don’t feel our cause to be worth of your support.

Yes that last bit was a bit bitchy and she has replied saying I have upset her and that ‘curable is not an accurate description of breast cancer’.  I deleted the reply because I was so upset and angry that someone should be so obsessed by the pedantics of words and miss the actual meaning of what I was trying to say.

Cancer Research UK is one of the largest non-profit funders of cancer research in the world.  Their annual research budget is in the region of £400,000,000 a year.  I once asked how much they devoted to all forms of metastatic cancer research, and not just MBC.  The answer was about ONE PER CENT.  This just begs the question what the hell do they spend all the research funding on, if it is not to try and save the lives of those dying of this disease.  I don’t want to hear how important a discovery might be in 10 years time!  Just yesterday CRUK sent me a newsletter and video about what they have been doing over the last year http://supportus.cancerresearchuk.org/PageFiles/666448/cancer-research-uk-annual-newsletter-2012.pdf and that they now know that there are 10 types of breast cancer to be dealt with and also stating the “Thanks to you … almost two thirds of women diagnosed with breast cancer now survive beyond 20 years”.  So those with ESBC, bearing in mind that about 10% are initially diagnosed as having MBC, that 60% of those diagnosed with ESBC them will be alive in twenty years.  I am now 4 years and 8 months into my MBC diagnosis and my chances of being alive in ten years is 2%; to even get this far about 75% of my METAvivor cohort is already dead and I very much doubt that there are any statistics for my chances of survival for twenty years.

I am not going to reply to this person who goes on about how she lost a close friend to MBC earlier this year.  What is the point?  I don’t think she really understands the difference between those who just might have a progression, and those of us who have already passed into the valley of the shadow of death.  After all the ESBC Survivors don’t want to know that 30% of them will join us and we don’t want to burst their pretty pink bubble of survivorship.  They are scared of what the future may hold for the, whereas we live with it every minute of every day.  I feel very disheartened, upset, astonished, insulted and dispairing because if they don’t understand, do we have any real chance?

 

 

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2 Comments

  1. She can’t face her own mortality. You’ve just dented her new “survivor” suit. Her claims of won her battle as true a warrior are under assault. The pink ribbon is wrinkled. May i say: good for you.

  2. I think the problem is that ESBC survivors see it as being one disease. I wonder how many know that in a lot of cases when there is a recurrence and progression the cancer has mutated and is not the same type of cancer as the primary. Oestrogen positive can become Oestrogen negative. It may still be breast cancer, but it has mutated from its original hormone status because that is the sneaky kind of thing that cancer does.

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