Social Conflict 7: Recurrence

Synopsis: All women with ovarian cancer deserve to understand the facts about recurrence that are relevant to their case and receive appropriate preventative care. But to the patient, her support network, and her care team, the work of dealing with an initial diagnosis and treatment is already a huge challenge. Whether they had recurred or not, patients in our discussion groups said they wish they had known more about recurrence sooner, but many were also uncertain when or how they would have preferred to receive this knowledge.

Patient voices: “I did eleven months of chemo and I thought it was over. My boyfriend and I celebrated. Honest to God, nobody told me, ‘You have to be so worried that this is gonna come back.’ We knew the possibility of recurrence was there, but nobody was like ‘You really need to pay attention to your body. You really need to listen to what’s going on.’”

“It was much harder for me to deal with my first recurrence than it was to deal with the diagnosis, emotionally. … When I learned about recurrence, then I knew it would be a lifetime of recurrence. You can never say never. There are people who recur a few times, and then never recur again. But usually, it's ongoing. So for me, it was realization of a different life than I had imagined for myself. Having recurred three times -- I've been four times in chemo now -- I've accepted that, and I still can live a really good life, even though I'm in recurrence.  And I just made up my mind to do that, because I feel that there was no other choice.”

Group analysis: Reflecting on their experiences with initial diagnosis and recurrence, patients almost universally wished that they could have had more information sooner. However, nurses and more seasoned advocates were skeptical that information about recurrence can be presented early in the ovarian cancer journey. Instead, they argued women should receive this information later and gradually in the form that is best suited to their learning style and social network. All this information should be thorough and factually accurate while still being presented in a framework of hope.

Design principle: Any new resource for ovarian cancer patients should present information about recurrence in a way that is appropriate for that patient and her support network.

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