How to get message out about metastatic cancer?
- Question from Shelly: Any ideas for Stage IV patients when friends ask, "Are you all finished with chemo?" The general public seems to think there is only one kind of breast cancer -- the curable kind. We Stage IV-ers are often still working, still parenting, not at all throwing in the towel, but we are not the same as the pink-wearing masses. Help!!
- Answers - Rosalind Kleban This is a very difficult issue. The public and the media have long ignored the Stage IV community. I have often said that "metastasis" is today's "C word." It is unfortunate that on top of all the other burdens that they should have, that they are called upon to educate the public. However, in answer to the question, the answer is, "I have the kind of breast cancer that requires constant attention." One of my patients was asked, "How long will you be taking Taxol?" and her answer was, "Hopefully 25 years."
- Mitch Golant The powerful piece of your question, it's come up in many other contexts, but particularly it's embedded in this idea of “live strong,” that somehow everyone falls into this category of getting by cancer. There's a whole population, a whole group of folks, who will be living with cancer their whole lives. And in its own way, it can be quite isolating, to somehow not be in the group.
- Rosalind Kleban It's really incumbent upon healthcare workers, and to a lesser extent upon patients, to get the word out that it is all one community, a portion of which lives continually with the illness. There are strides being made in making this message public. There is an organization called the Metastatic Breast Cancer Network, I think it's 3 or 4 years old, who held their first conference at Sloan-Kettering. We had 300 people, coming from 12 different states and Canada. It was the first time a program just for advanced disease was held. The following year, it was done at M.D. Anderson in Texas, and this May it will be at Dana-Farber. This is a program dedicated to and addressing advanced disease. I would encourage anybody with the illness to look into this organization, and to request or demand at their facility that they create services for women with advanced disease.
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