Young (age 15-45) women living with metastatic breast cancer (MBC) face unique challenges and deserve high quality support to feel prepared and confident in making informed treatment and life choices.
Together, Tigerlily Foundation and researchers of the Metastasis Research Society (MRS) designed a unique survey for young MBC patients meant to guide collaborative patient support and education efforts.
The survey closed recently with 68 metastatic breast cancer participants. The results support the need for more education about metastatic cancer amongst the metastatic breast cancer patient community specifically. As a society full of experts in metastasis research, the MRS is dedicated to fulfilling this need by creating blog posts, webinars, and metastatic patient-centered conferences in conjunction with Tigerlily and other non-profits focused on metastatic cancer.
When they were diagnosed as stage IV metastatic, 29% of patients did not completely understand that they were being diagnosed with a disease for which there is no cure.
Nearly half (46%) of patients did not feel as though their care provider had given them the information they needed to feel confident in making treatment or palliative care decisions.
35% of patients relied upon information provided online to make treatment or palliative care choices MORE than information from their care provider.
49% of patients said that their lack of scientific knowledge regarding cancer and metastasis has hindered their desires or ability to be a patient advocate or to be an advocate at the level they would like to be i.e. be able to review grants or participate in science steering committees.
The majority (81%) of patients are interested in learning the basic science behind cancer and metastasis through videos and written material designed by leading metastatic cancer researchers.
Similarly, 79% of patients felt as though they would be more confident in making treatment decisions if they had a better understanding of the basic science behind metastatic disease and cancer therapies.
These results support the mission of the MRS to educate metastatic cancer patients. Our goal now is to positively impact the metastatic cancer patient community by providing information that enables patients to make more informed care and treatment decisions, allows patients to feel confident in working with researchers and clinicians to guide patient-centered research, and to guide advocacy efforts.