Encounter with Dr Susan Love

Not me, of course, but a friend in New York went along to an Interview, Q & A, buffet event at the last minute a couple of days go and got to ask questions at the mic and speak to Dr Love during the evening. As a fellow METAvivor her questions were directed about the way MBC research is funded and the support that seems to be denied us by the general BC community because we are no longer classed as ‘survivors’, or do not feel that we are.

When my friend said to her that only about 2-3% of research funding in the US is spent on Metastatic Breast Cancer research Dr Love was very surprised and thought that all research funding is aimed at MBC. Is it?

Possibly because the early trial which evaluate maximum dose and then the best dose level and efficacy probably are done with those with mets. After all we are lab rats who seem to be seen as expendable, and they don’t want to risk doing these more experimental stages on Early Stagers who are the ones who will be the ones that will really get the benefits. They are looking at ways to slow down or stop metastases, but will this really help those of us for whom that process is already under way? MBC takes the risks for the benefit of Early Stage.

There is little research which is directed specifically at the effective treatment of MBC, and our needs. It is survival statistics that really matter and as there are no known cures for MBC we are not going to be on that list. Therefore we are not good PR; no one wants to hear that people still die of breast cancer because the colour PINK says that this should not be. After all it is only fairly recently that they found out that new tumours that develop can have a different hormone status to those previously formed. This makes research even more complex because what they don’t know is so much more than they do.

There is a PDF that can be downloaded from a Komen page http://ww5.komen.org/Content.aspx?id=19327357458 highlighted in blue as Research Fast Facts which I hope will open with the link below. this clearly states that between 2006 and 2012 “Susan G. Komen has invested over $91 million since 2006 in nearly 200 grants focused on metastasis”. Taking into account the donations given to Komen by various people, foundations and ‘partnerships’, and the now $600K + salary of Nancy Brinker now she has stepped down as CEO I don’t find this very encouraging. $91 Million in 7 years …

Dr Love is very much part of the main breast cancer research world and yet she doesn’t seem to grasp the difference between Early Stage and Metastatic Breast Cancer. Her attitudes have changed a lot since she had an Early Stage cancer diagnosis a couple of years ago (not breast cancer) and she can now more clearly see the patient point of view because she has been one herself. However the difference in the concepts of your treatment has been successful and you have a good chance of not having a recurrence is SO very different from being told that you cancer has spread and although it can be treated, possibly for years, you will die.

In some ways the former attitude of being cured can be unhelpful. In Scotland a few years ago they did an analysis of repeat prescription requests for Tamoxifen or Letrozole etc (possible to do because of the NHS being the central prescriber of meds) and they found that quite a sizeable percentage of women gave up taking these meds before the full course of, say, 5 years was up. This was because they assumed they were cured and didn’t need to bother, or they thought the side effects were too severe to continue. Try MBC and then tell me about side effects!

Early Stage and Metastatic Breast Cancer may be linked, but until there is parity in the understanding, acceptance and needs of the two communities they are only biologically the same disease. This is NOT good enough. Breast cancer is not only Pink. Why isn’t more done to find effective treatments for men with BC? More understanding of risks and treatments and forms of breast cancer that may effect different racial groups? More than that … some of these grants are HUGE, what are they spent on? State of the Art Labs? PR? Top salaries for some? Corporate Image of the research facilities?

Not good enough. Worldwide about 500,000 women and men will die of breast cancer this YEAR alone. Billions are donated and just seem to disappear down the rabbit hole.

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