If you are newly diagnosed with MBC, you probably have many questions and concerns. Read for information and advice from those who are living with MBC including why it is important to consider clinical trials early in your MBC journey.
Breast cancer in transgender women and men has received little attention. Metastatic breast cancer has received even less. But as transgender people with breast cancer speak out about their treatments and their experiences, that is changing.
Below you can find studies on breast cancer risk in transgender patients, personal stories, and LGBT-specific resources for transgender women and men facing cancer.
Research
Personal stories
Resources and Support
I will have to pay for ALL medical costs associated with my participation in a breast cancer clinical trial.
Answer: False
While you are in a treatment trial you may receive an experimental, new breast cancer treatment in addition to routine breast cancer care. In this instance, the trial sponsor is responsible for the new breast cancer treatment while many insurers will cover the remaining routine patient care costs. (Patients will still have to pay co-pays and co-insurance amounts, even if the trial is covered by their insurance.)
In fact, Federal law requires most insurance companies to cover routine patient care costs like scans and other tests that take place in the clinical trial. This varies from state-to-state, so it is important to check with your insurance carrier. Medicare has been covering routine costs for breast cancer clinical trials since June 2000.
Most trials do not cover costs such as parking, meals, transportation (if the trial site is not near your home) and lodging. However, there are programs that can help cover these costs.
You can find more information about “Paying for Clinical Trials” in MTT.
Wishing you and your loved ones a joyful holiday season and a Happy New Year!
The Metastatic Trial Talk Team
2% of breast cancer patients are diagnosed initially with stage IV metastatic disease.
Answer: False
Between 6-10% of breast cancer patients are diagnosed initially with stage IV metastatic disease. This is called “de novo” metastatic breast cancer.
You can learn more about de novo metastatic breast cancer here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5905205/
You can find personal stories from women diagnosed de novo on MTT here: https://breastcancertrialtalk.org/2018/12/01/personal-stories-6/
In 2009, October 13 was established as Metastatic Breast Cancer Awareness Day.
Breast Cancer Awareness Month had been on the national calendar since 1985. But its focus was primarily screening and diagnosis. All too often, women and men with metastatic breast cancer were pushed to the margins or felt completely invisible. MBC Awareness Day ensures this doesn’t happen.
Of course, improving awareness and understanding of metastatic breast cancer should not be limited to one day or one month. But October does create an opportunity to move the conversation from detecting breast cancer to living with MBC.
The Metastatic Breast Cancer Network has created “A Fact A Day” with information you can share via social media to help create awareness of MBC. Read more about the history of metastatic breast cancer awareness day and learn how you can take part:
You may be treated with only a placebo in a metastatic breast cancer clinical trial.
Answer: False
A patient with metastatic breast cancer will never receive only a placebo in a clinical trial.
It is possible that a placebo could be given along with the new treatment. But that would only occur if the new treatment was being given along with another drug, and the researchers wanted to see if the two-drug combination had different safety and effects than the one drug alone.
Also, if standard therapy is available, a patient may receive the standard therapy plus the new therapy or the standard therapy plus a placebo. But the patient would never receive the placebo alone.
You can learn more about how and when placebos are used in clinical trials below.
Many people diagnosed with cancer never consider entering a clinical trial. Yet clinical trials provide unique opportunities to receive high-quality care while contributing to the research that is necessary to determine the effectiveness of new cancer treatments. Hearing patients’ and doctors’ personal opinions and experiences can help you think about whether and when to consider a clinical trial as part of your cancer care. Below you can:
Watch the Cancer Support Community’s “In Their Own Words.” In this video series, doctors and people living with cancer discuss their experiences with cancer clinical trials.
Watch the Cancer Support Community’s “A Story of Hope,” which includes a range of cancer patients talking about the decisions they faced when considering whether and when to enter a clinical trial.
Read an interview with a breast cancer advocate conducted with an oncologist about how clinicians learn about clinical trials.
Watch an ACT video that includes doctors talking about what patients need to know about clinical trials.
Many women and men have chosen to blog about what it is like to live with metastatic breast cancer. These blogs below are by women currently writing about their experiences. Have others you think we should add to our list? Please email us!
Many people have found that video provides a unique way to share their personal experiences with cancer. Below you can find links to stories women and men have shared about their experiences with metastatic breast cancer.
