#538 Beth Caldwell is a Super Hero

Long Lake--dedicated to Beth Caldwell on August 19

There are no words I can describe on how I am feeling tonight after reading Beth Caldwell's latest blog.  Rob and I met this incredible woman in Seattle after I had been diagnosed with metastatic breast cancer.  Our advocacy work was in its infancy and we were looking for ideas on what to do with our energy to make this disease a priority in the breast cancer community.  We listened and learned.

Beth was fierce, direct and I sat in awe of her knowledge and her passion.  Her "take charge" attitude was evident that day but didn't realize until later of her numerous accomplishments with her civil rights work along with her cancer work.  In our brief meeting I learned how important it is to advocate for myself, question cancer organizations' funding and search for the truth in giving.  She was unstoppable and that is the one lesson I will remember and continue to emulate as long as I am physically able to do so.

Grab the kleenex box and read her latest blog--but don't stop there.  Work backwards through the other entries.  I guarantee you will thank your lucky stars she has been in our corner as a hero to not only the mets community but to anyone else who needed support.  Cult of Perfect Motherhood by Beth Caldwell

Comfort and love across the airwaves to her and her beloved family.  It just isn't fair--GDMFSOBS! (My best combination of swear words I shared with her).

Tomorrow, instead of buying your overpriced latte (or whatever you drink), send a donation in honor of one hell of a woman.  Either donate to UW Carbone Cancer Center , Metavivor or Fred Hutch.

Thanks for reading #538 of 7777.

#537 Facts About MBC

The DC Die in

The entry below is what I have been posting for the past twenty-two days on Facebook. It was my attempt to counter the bombardment of Pinktober as we entered this stressful (for metsters) month.  Read, learn, educate and share.  Speaking to the legislators in Washington DC on October 13th along with others living with this disease, it felt empowering that our voices are beginning to be heard.  I will continue hollering and bellowing on what can be done and what we should be doing so please, join us in roaring.  www.onewomanmanylakes.org

From MBCN

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, lung, or liver, is still breast cancer and does not become bone cancer or liver cancer or lung 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 experience a metastatic recurrence and some women have metastatic disease on their initial diagnosis of cancer–despite mammograms and early detection!
4. Why does breast cancer metastasize? (pronounced as Me-TAS-ta-size)
   Researchers at this time can’t explain why metastatic disease occurs, but they’re working on finding answers. Early detection is a detection tool, but it does not a cure or prevent an early cancer from coming back in the future as metastatic disease.
5. What are the statistics on incidence of metastatic breast cancer?
   There are estimates that 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 further spread of the disease and managing symptoms. The goal is for patients to live a good quality of life 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: An estimated 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). These numbers are approximate, because some people have more than one subtype ( HER2+ and ER+) or their subtype may change over time.
9. How many women and men die of breast cancer each year?
   Approximately 40,000 die of breast cancer each year—a number that essentially is 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 the National Cancer Institute collects statistics of patients who have an initial diagnosis of mbc, the NCI does not count metastatic breast cancer recurrences.  Studies estimate that there are over 155,000 women and men living with metastatic breast cancer 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?
    The Metastatic Breast Cancer Alliance did a study that found that of all research grants, funded by major public and private sources from 2006-2013, only 7% of funds studied metastatic breast cancer, even though metastasis is what causes breast cancer to become a deadly disease.
13. What is National Metastatic Breast Cancer Awareness Day?
    October 13 was sent aside by unanimous House and Senate resolutions in 2009, establishing that one day in October should recognize and bring awareness to metastatic breast cancer. 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. History of MBC National Awareness Day >
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 patients 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 refers to patient anxiety over scans and occurs as their scan date approaches. Good test results refer to stable disease (mets are not growing or spreading) or NED (no evidence of disease) on scans.
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 wonderful words to 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 or preventing adverse side effects of treatments.
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. 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.

Thank you for reading #537 of 7777.