Stage four and living well


Kathy LaTour blog image

More than 200 men and women with metastatic breast cancer gathered in Houston last weekend to hear not only the latest updates on treatment but also to hear from each other. This is a group where networking with other attendees offers hope to the newly metastatic that they too will live well for years. Meetings of this sort can show exactly how far we have come with treatment. Few of the women looked ill, turbans and wigs being the most obvious signs that someone was in treatment. For the most part, this crowd looked like any other at the Friday night reception - loud, laughing and ready to learn. Put on by the Metastatic Breast Cancer Network,the meeting began on Friday night with a reception and continued on Saturday and Sunday with workshops and lots of time for networking. The breakouts covered a wide range of topics such as hormone-positive metastatic breast cancer, triple-negative metastatic breast cancer, HER2-positive breast cancer, bone mets, health insurance, disability and much more. A favorite was the session on "Living with Metastatic Disease" by Don Dizon, a doctor at Harvard Medical School who specializes in gynecologic cancer and survivorship. All the presentations will be on the website any day now, so check them out. I attended the meeting with Carrie Corey, a former student of mine from Southern Methodist University who is living with metastatic disease. Diagnosed originally at 29, Corey learned she was metastatic early in 2012 and only weeks after she and husband Chris adopted their son. She has had successful treatment and at present the spots in her liver and bones are completely gone. She only has a few small spots remaining in her lungs. It was her first meeting of this type, and she was thrilled when other women would figure out she was the one who blogged for CURE magazine.For Carrie, it was wonderful to hear other women who are classified "No Evidence of Disease" (NED). She also met other women her age who are doing well. At the first general session on Saturday morning, the moderator had them stand by the number of years since their metastatic diagnosis. The winner has been living with metastatic disease for 18 years. She received a huge round of applause from women who want to be in her spot in another few years. These women and men represent the new category of survivor - those living with chronic cancer. Many will have long, durable remissions in their disease before it pops up again. What this group would like to see is more funding for research for metastatic disease specifically. I was also moved by the men at the meeting. One of them, Peter Devereaux, a former Marine who was stationed at Camp LeJeune in North Carolina, spoke eloquently about living with metastatic disease. For those of you who do not know about this issue, Marine and Navy personnel living at Camp LeJeune from 1957 until 1986 were exposed to water filled with chemicals that resulted in the largest cluster of male breast cancer in the country, as well as numerous cases of leukemia in children and children born with birth defects. You can read more about this at the website The Few, The Proud, the Forgotten. When I talked to Peter he said he had the best job in the world as a U.S. Marine and he is still proud to have served his country. He is also one of the first to get benefits for his cancer, something he and others have been fighting to receive for decades. In 2012, the Camp Lejeune Families Act was passed, which provides all kinds of support for those affected by what is now a Superfund site.

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