Progress in diagnosing and treating cancer patients is accelerating. Cancer Research UK recently announced that “half of new UK cancer patients can expect to live for another decade.” This means having a family is now within reach for many more individuals, requiring a different approach to disease management, which takes into account important aspects such as fertility, pregnancy, breastfeeding, and parenting.
Of the many cancers, a small number could now even be considered a chronic disease that allows patients to live a near normal life, rather than a life sentence. “In CML current therapy brings most people into remission and life expectancy of patients is getting very close to that of the general population if patients take their drugs,” Jan Geissler, director of the European Patients’ Academy and 13-year chronic myeloid leukemia patient (CML is a cancer of the white blood cells).
Whatever the form of cancer, from Geissler’s experience, a cancer diagnosis tends to make people reconsider their priorities – including whether they can and/or should have a family. “When cancer becomes survivable or a chronic disease there is always the question of whether you have to give up on having children,” Geissler shares.
With more cancer patients considering having a family, sharing and learning from experiences of different cancers and cancer treatments in pregnancy become all the more vital. “We need to think beyond our diseases and beyond doctor and patient,” reveals Geissler. “We need to be much more proactive in sharing, admitting failure, and replicating successes. We need a very different approach to collaboration.”
Geissler sees a patient-led registry as the way forward. “Collecting the data is very difficult because the hematologists and oncologists often don’t see the outcome of the pregnancy and the gynecologists are not reporting the cancer on the pregnancy registry. We think a patient registry is the way to go, with patients collecting data about the pregnancy and the course of their disease into a patient registry.”
Do you think patients can contribute to data collection in registries and advance collective knowledge about the impact of medicines on pregnancy?