Finishing Up at San Antonio

I headed home the last day of this symposium with mixed emotions.  It was a very exciting week and an amazing experience to be there with thousands of doctors, scientists and advocates who are so committed to solving the problem of breast cancer.  It gives you real hope, but I was also very aware the whole time that my sister was home dealing with her own diagnosis of breast cancer and the complications of her treatment.  That's a strong reminder that we still have a long way to go before we can say to our children and grandchildren that there was once a time when people used to get breast cancer and had to go through surgery, radiation, chemotherapy – and sometimes die of this disease.  It is hard to imagine that there is anyone in this country who doesn't have someone close to them, family or friend, who has had to face breast cancer, and that isn't going to change anytime soon.

I was impressed by a lot of what I heard and saw in San Antonio, but a few things stood out.  I noticed that doctors really seem much more tuned in to the importance of the side effects that treatments cause.  Every major clinical trial now includes a very detailed analysis of the side effects, and those results mean something when doctors decide how to use new treatments.  They also are asking patients how they feel more often.  They are starting to understand that there is a difference between "patient reported outcomes" and what the doctor might write down on a chart.  It's good to know that doctors are actually listening to what we have to say and respecting that as real data.  I hope we see more of this trend.

There was also more attention to the cost of drugs and new treatments.  It is very frustrating for patients to hear about these approaches and then find out that they’re so expensive they can't afford to take advantage of them.  And of course, some of the most promising new agents cost the most.  I was excited about the new OncotypeDX for DCIS, but it costs over $4,000, and it isn't clear that everyone's insurance will cover that cost.  I heard a number of top breast cancer specialists express concern about making sure these drugs and new tests are available to patients at a reasonable cost, or making good decisions about when to use them so patients don't end up paying for treatments that are right for them.  It's good they are thinking about those issues, but the problem isn't solved.

Finally, it is beautiful thing to see people from so many countries, but it was hard not to notice that many of the major studies are being done outside the United States.  It’s great to see so much research from around the world, because breast cancer is a global problem.  But I worry, along with a lot of American researchers, that we aren't keeping pace anymore.  Research dollars for breast cancer and for all research in this country are falling, and that is a serious problem.  We need to be sure that the people who make these decisions hear our voices loud and clear and understand how important it is to fund breast cancer research in this country.  Like I said, we still have a long way to go.