Did you have a Mirena in place like me when diagnosed with breast cancer?
I was diagnosed with breast cancer 3.5 months ago and had a double mastectomy 3months ago. I am 44 years old. I started doing some research as a number of people I know with breast cancer who were young also had a Mirena. There is new research coming out of: -Europe that indicates that there is a 40% higher risk of breast cancer if you had a Mirena, and -Germany that shows that the Mirena can change hormone levels in the breast based on scans I had breast ultrasound scans that show I did not have breast cancer just before my Mirena was inserted 5 years ago, and that it developed post Mirena insertion. I had no genetic factors (based on testing), and no risk factors for breast cancer. It seems highly co-incidental. I also looked up the FDA documentation for Mirena approval and it states that "Spontaneous reports of breast cancer have been received during postmarketing experience with Mirena. Because spontaneous reports and voluntary and from a population of uncertain size, it is not possible to use postmarketing data to estimate the frequency or establish causal relationship to drug exposure..." I am keen to connect with other women who had a Mirena in place and then were diagnosed with breast cancer. If this is you, please respond to this post- I would love to hear your story!
WIDER clinical trial
Hello everyone Is anyone participating in the WIDER trial for riblociclib? After much indecisiveness over the last 4 weeks I have decided to participate, and I go in tomorrow to sign the consent forms. But now I’m having doubts!. The thought of putting another drug in my system after just getting back to ‘functional’ after the hardest 12 months of my life, is making it really difficult to know if I’m doing the right thing.🗣️ Share your views: Finding My Way Advanced+
Finding My Way-Advanced was one of the first self-guided web-based programs designed to improve wellbeing for people with metastatic breast cancer. Flinders University are now seeking participants to take part in Finding My Way-Advanced+, which aims to test whether adding human support and/or guidance to Finding My Way-Advanced, improves how much people use, and benefit from, the program. The aim is to find out whether guidance improves engagement with the program and outcomes, such as quality of life and distress, and if this differs by whether people received guidance via email, phone-call, or video-call. Recruitment is open for 12 months, with the closing date expected to be mid-2026. You can particpate in this program if you are a person who has been diagnosed with metastatic breast cancer. If you are interested, simply complete the following baseline survey and the researchers will be in contact with you shortly; https://redcap.link/findingmywayadvancedplus.📣 Survey Invitation: Tucatinib (Tukysa) and Metastatic Breast Cancer
Dear members, We'd like to invite you to take part in a short survey about tucatinib (Tukysa) for people with human epidermal growth factor receptor 2 positive (HER2+) metastatic breast cancer. This survey is for people who have either taken tucatinib (Tukysa), or tried to access it. Your feedback will help us understand the day-to-day impact of accessing (or not accessing) this treatment, including physical health, emotional wellbeing, financial pressures, and overall quality of life. The insights you share will be used to support a consumer submission to the Pharmaceutical Benefits Advisory Committee (PBAC), the body that decides which medicines are made more affordable through the Pharmaceutical Benefits Scheme (PBS). Take the survey here: https://www.surveymonkey.com/r/LJXB3KT The survey is open until 12 September. The survey is anonymous, voluntary, and takes about 10 minutes to complete. You can skip any question you don’t feel comfortable answering. Thank you for lending your voice to this important advocacy. If you have any questions or concerns about this survey, please contact policy@bcna.org.au
