National Metastatic Breast Cancer Awareness Day

Because October 13 is Metastatic Breast Cancer Awareness Day, I wanted to share some information about the disease, some that might help with some common misconceptions about metastatic breast cancer. Although a lot of the information is not all positive things we want to hear, remember that We....me, Ben, my kids, my family and friends are taking this on in the most positive of ways. It is absolutely possible to be realistic and optimistic at the same time.   

There are over 150,000 of us in this country living with (not dying of) our disease...as the majority of us are not dying of it at this moment. There is hope! Thanks to the new targeted drugs, we are living longer.  And the longer we live, the more time it gives researchers to find the next new great drug or better yet...the CURE! 

I believe in the power of Hope and the power of Prayer  I am so grateful for doctors, researchers, new treatments, the amazing people I’ve met from this journey, my TEAM and for life itself. 
Love to you all!

The following facts are straight from www.mbcn.org.

MBC Fact a Day - 31 days of October

1. What is Metastatic Breast Cancer? (pronounced as Met-a-STA-tic)

MBC also known as Stage IV is cancer that has spread outside of the breast to other organs such as bones, liver, lung or brain. This process is called metastasis.(pronounced as Me-TAS-ta-sis) 

2. What happens when breast cancer spreads?
Breast cancer that spreads to another organ, such as bones or liver, is still breast cancer and does not become bone cancer or liver cancer. Under a microscope, the tumor cells will still look and act like breast cancer and will be treated as breast cancer.

3. Who gets metastatic breast cancer?
No one brings metastatic disease on themselves. The sad truth is that anyone who has had an earlier stage of breast cancer can have a metastatic recurrence and some women have metastatic disease on their initial diagnosis of cancer--despite mammograms and early detection!

4. Why does Cancer metastasize? (pronounced as Me-TAS-ta-size)Researchers can't predict who will get metastatic disease, but they're working on the answers. Early detection is important, but it is not a cure and does not guarantee MBC will not occur in the future.

5. What are the statistics on incidence of metastatic breast cancer?
Approximately 20-30% of patients with an early stage cancer will have their cancer return as metastatic, even if they were told their early stage cancer had been "cured." Another 8% of new breast cancer cases are found to be metastatic at their initial diagnosis.

6. What is the main difference between early stage breast cancer and metastatic breast cancer?
Metastatic Breast Cancer (mbc) is treatable but no longer curable. Treatment is lifelong and focuses on preventing the spread of the disease and managing symptoms. The goal is for patients to live productive and comfortable lives for as long as possible.

7. How is metastatic breast cancer treated?
Depending primarily on the kind or subtype of mbc, patients may be on either targeted therapies or systemic chemotherapy. Radiation and surgery are also sometimes used.

8. What are the different kinds (subtypes) of metastatic breast cancer?
Subtypes for early stage and metastatic breast cancer are the same: 65% of patients have Hormonal (estrogen or progesterone driven), also called ER+/PR+; 20% have Her2+(fueled by a protein identified as Her2 neu) and 15% have Triple Negative Breast Cancer (TNBC- which does not have any of the 3 above known biomarkers: ER. PR or HER2).

9. How many women and men die of breast cancer each year?
Approximately 40,000 die of breast cancer each year and that number is essentially unchanged over the last 20 years. All deaths from breast cancer are caused by metastatic breast cancer.

10. How many people are living with mbc in the US? 
Although statistics are not collected, it is estimated from studies that there are over 155,000 women and men living with mbc in the US--and doing our best to live well!

11. Is metastatic breast cancer a chronic disease?
Not yet, but that is an important goal. As researchers identify more and better treatments, MBC could become a chronic disease like diabetes or HIV/AIDS, where patients can be stable on medications for 20 or more years.

12. How much is spent on research funding for metastatic breast cancer?
Shockingly, a very small percentage (estimated at less than 5%) is spent on studying the process of metastasis and why and how cancer spreads, even though metastasis is what causes breast cancer to become a deadly disease.

13. What is Metastatic Breast Cancer Awareness Day?
October 13 - One day is not enough but it's a start for year round awareness of what mbc is and why it's important for all of us.
http://bit.ly/1eiKyFf

14. Do men get breast cancer?
Yes, men do get breast cancer and they are often misdiagnosed initially. They represent about 1% of the new cases of breast cancer and 1% of the deaths from metastatic breast cancer. (410 deaths in 2012)

15. Do young women get metastatic breast cancer?
YES. For young women under 40: 5% of the new cases of breast cancer and 3% of the deaths. Metastatic breast cancer is the leading cause of cancer deaths in this age group. For young women under 50: 27% of the new cases of breast cancer and 16% of the deaths.

16. How is metastatic breast cancer monitored?
Usually MBC is monitored by periodic imaging tests (CT, PET or bone scans or MRIs), blood tests measuring tumor markers and assessment of how the patient is feeling.

17. How often are people living with metastatic breast cancer scanned?
Usually we are scanned every 3 months; if metastases remain stable or shrink, scans may be done less frequently (eg every 6 months).

18. What is scanxiety?
Scanxiety is scan-anxiety and occurs in most MBC patients as their scan date approaches. Good test results are either stability (mets not growing or spreading) or NED (no evidence of disease)

19. What is NED (no evidence of disease) and how does it differ from being 'in remission' or being 'cancer free'?
No Evidence of Disease means that the metastases are no longer detectable on an imaging scan. This is great news, but because breast cancer cells are still circulating in the body, treatment continues. 'In remission' is an older term and not usually used in metastatic breast cancer. Once you are metastatic, you are never 'cancer-free' but being NED or being stable are still the sweetest words you can hear from your oncologist.

20. Why does treatment for metastatic disease seem 'less aggressive' than treatment for early stage disease? Why does everything feel less urgent, despite a much more serious prognosis?
Treatment of early stage disease focuses on curing the cancer and therefore is immediate and aggressive. Because there is no cure for mbc at this time, treatment focuses on controlling the disease and permits a more measured, long-term approach to therapy, with hopefully more attention directed to long term quality of life and reducing adverse side effects.

21. People often ask 'Why do you look so good, if you have an incurable cancer?'
Metastatic breast cancer has its ups and downs. Sometimes, we may be feeling relatively good and are living with stable disease. Other times we may be experiencing a lot of side effects, but if hair loss isn't one of them, people may not notice. Even when the disease is progressing, we may still look ok, up to a certain point.

22. What are clinical trials and are they a 'last resort' when all other treatments fail?
Not at all. Clinical trials are controlled treatment studies on new drugs and are the method used to obtain FDA approval of new treatments. They should be an option considered right from the beginning of treatment for MBC patients, along with standard treatments. A clinical trial may or may not be right for an individual and should be discussed with the oncologist.

23. What are the types of clinical trials and what's the advantage to participating?
Phase 1 and 2 trials involve a relatively small sample size of people (sometimes less than 100) and determine dosage, safety and effectiveness of the new drug. If results are favorable, a phase 3 study is launched which is on a large scale, involving multiple sites across the country (and sometimes worldwide). It compares the current standard of care to the new treatment. While there are always risks and benefits, participation, especially in a phase 3 study, can give someone access to the latest promising drug, long before it comes to market. http://bit.ly/17INCFX

24. What does it take in terms of time, money and research to bring a new drug to market?
On average, it takes 8-10 years and approximately $1 Billion for a new drug to go from a chemistry model to FDA approval. Overall only 11% of drugs that start in clinical trials are eventually approved, but 34% of Phase 3 Clinical Trial drugs are approved. "Every advance in breast cancer treatment and care has been the result of a clinical trial."

25. What has been the level of breast cancer research funding over the last few years?
Unfortunately, there has been a big drop in funding in government research (down $70 Million since 2010) and SGKomen (down $15 Million) and this is for ALL breast cancer research, not just metastatic research. The good news is that the number of grants awarded to study metastases and recurrence by the National Cancer Institute (NCI) and the Dept of Defense Breast Cancer Research Program (DODBCRP) has increased in the last 2 years.

26. The first thing many people say, when they get breast cancer, is that they have no family history, so how can this be happening to them?
Family history is a risk factor for less than 15% of those diagnosed, which means that 85% of breast cancers are not caused by family history.

27. What does being BRCA positive mean?
Having an abnormal or mutated BRCA1 or BRCA2 gene means that the risk of developing breast or ovarian cancer dramatically increases, but not everyone with a BRCA mutation will get cancer. Mutations in these genes are rare in the general population, higher in certain ethnic subgroups, such as those of Ashkenazi Jewish descent. Overall, BRCA mutations account for 5% of all breast cancers.

28. What is Inflammatory Breast Cancer?
Inflammatory breast cancer (IBC) is a rare and very aggressive disease in which cancer cells block lymph vessels in the skin of the breast. This type of breast cancer is called "inflammatory" because the breast often looks swollen and red, or "inflamed." Because it is difficult to diagnose and often mistaken for other conditions, patients usually have IBC at stage III or IV. http://1.usa.gov/jrbWt

29. Is there a difference between palliative care and hospice care?
Yes! Although many people think they are synonymous, palliative care should be part of each person's cancer care right from the beginning. Palliative care is treatment of side effects, stress and pain. Studies have shown that palliative care not only improves quality of life, but also can extend life by several months.

30.Why should everyone care about metastatic breast cancer?
Early detection does not guarantee a cure, and treating early stage breast cancer does not mean one never has to worry about cancer again. Metastatic breast cancer can occur 5, 10 or 15+ years after a person's original diagnosis and successful treatment. ~20-30% of women initially diagnosed with an early stage cancer will go on to be diagnosed with metastatic breast cancer.

31. What's the message from those of us living with metastatic breast cancer for this last day of Breast Cancer Awareness Month?
Live Every Day! Let's celebrate that we survived another Pinktober!http://bit.ly/16NExkp