Dear Fran Visco (President of NBCC)

Metastatic Breast Cancer Network applauds and supports the efforts of National Breast Cancer Coalition (NBCC) to establish a 2020 Deadline to End Breast Cancer. In your recent op-ed piece in the Boston Globe,  you laid out a cogent argument for why we need to approach breast cancer with a deadline and a co-ordinated, bold plan, reminiscent of President Kennedy’s challenge to put a man on the moon in a decade. We know all too well the successes and failures of breast cancer treatment, research and advocacy. We live from scan to scan and enthusiastically accept incremental advances in treatment because that is our only choice. We agree that we need a  plan that attacks the problems of “organizational and systemic dysfunction that discourages bold new ideas in favor of safe research and predictable results.”

As a voice for the metastatic breast cancer community, we particularly liked your clear statement of goals for the 2020 Deadline campaign:

• preventing people from getting breast cancer in the first place and
• preventing those who get it from dying of it.

Previously this goal had been stated as “preventing metastases,” which left many of us wondering if we were included or not. We already have mets, so it didn’t seem that prevention was going to work for us. Some argued that preventing metastases meant preventing their further spread, but it was still an unclear and contentious issue.

We thank you for clarifying this with a simple phrase: preventing those who get it from dying of it. No doubt there that we are included.

As an organization, Metastatic Breast Cancer Network urges all of our members to sign the petition and visit your website to find out how to support the campaign in other ways.

Thank you. We look forward to working together with NBCC.

Michele Przypyszny – President

Metastatic Breast Cancer Network (MBCN)

I have a confession to make…

I have a confession to make. Before I was diagnosed with metastatic breast cancer, I would hear that someone in my community had died from breast cancer and I would think: “It’s too bad they didn’t  get annual mammograms. It’s too bad they ignored early detection practices. It’s too bad they died, but it’s really their own fault.”

I was diagnosed in 1992 with early stage cancer–stage 0 or DCIS–the earliest you can have. I had a simple mastectomy, which was considered a 100% cure, and breast reconstruction. I continued on with my life, without worrying too much about breast cancer. I never embraced the pink survivor label because I never felt I had gone through that much–no chemo, no radiation, just some disfiguring surgery followed by a saline implant, which was supposed to simulate a real breast.

I continued for 17 years with annual mammograms, 17 years of breast self exams, 17 years of  annual checkups and then I was diagnosed with advanced breast cancer with metastases to the bone–stage IV–treatable but no longer curable. I was no longer the poster girl for early detection, because this time early detection had failed me.

Like many in our pink-drenched communities, I had accepted the message that early detection was the cure and that mammograms were a failproof screening test. My education in breast cancer began the day I was diagnosed with mets and I learned that mammograms are a good tool, but less effective when the woman is young and premenopausal; less effective for women with denser breast tissue; less effective at identifying aggressive cancers; susceptible to many false positives (identifying suspicious areas which turn out to be cysts or other normal anomalies); and unable to predict whether the cancers that are identified will go on to be deadly or will proceed in an indolent and unthreatening growth cycle, better left alone.

The message promoted by many breast cancer organizations is one of positivity, survivorship and fighting and winning. So the actual capabilities of a screening tool have been exaggerated and early detection has become synonymous with “the cure”.

When life throws us some crisis, most people like to see it as a challenge and find meaning in their travails. We are by nature optimists, so if you lose your job, you will find another and maybe a better one or in a different field than you had worked previously and never would have explored without the rude shove out the door. The same happens with disease. Testimonials abound from some that they are better people than they would have been without the heart attack, the cancer, the terrible car accident.  They realized their life had the wrong priorities, that they weren’t appreciating every single day. And people do change. They meditate, they volunteer, they mend bad relationships. While I acknowledge that can happen, I never want to characterize cancer as a gift. I don’t think I need to endure treatments and side effects the rest of my life just to be a better person.

But I’d like to believe that I have stage IV metastatic breast cancer for a reason:  to speak out about it, to educate people, to fill in the missing gaps in the breast cancer awareness messages, to dispel the “guilt” myth, that this cancer is my own fault, that I failed to eat right, think positively, live well.

October 13 is Metastatic Breast Cancer Awareness Day–one day in Pinktober that Metastatic Breast Cancer Network lobbied Congress for in 2009. One day to talk about the ugliness and deadliness of breast cancer, but also the promise and hope of 155,000 or more living with the disease in the US, struggling to live every day well, waiting for the next treatment to extend our lives a few months longer, hoping for a cure to finally stop metastases from occurring.

I have a confession to make. I have metastatic breast cancer and 40,000 women and men dying every year from breast cancer is unacceptable. It’s too bad that the breast cancer message has been skewed. It’s too bad that few know that an estimated 25-30% of survivors will become metastatic. It’s too bad that there is not enough money going to co-ordinated, effective research on metastases.

It’s not too early to start thinking about October. I’ll be writing letters, lobbying the media, working to get the message out. What will you be doing?

Ginny

Ellen and Suzanne

It’s strange that two friends, colleagues, advocates and leaders of MBCN died within a week of each other. I want to read meaning into this coincidence, as if the universe had decided their fellowship and shared mission had linked their destinies. I’d like to think that dying within days of each other gave them some karmic connection and added comfort and peace at the end.

Ellen Moskowitz, former MBCN president, and Suzanne Hebert, former vice president, had each served the MBC community long and well.

Ellen, a strong personality and passionate leader, was involved in MBCN almost since its inception. She became president in 2006 and during her four years of service accomplished many things: the proclamation of October 13 as Metastatic Breast Cancer Awareness Day by Congress; the presentation of four national conferences and two regional programs; the creation of a metastatic information kit and much more. She spoke out whenever possible to bring awareness to the public, the breast cancer community and medical professionals of the needs of those living with mbc.

Suzanne joined MBCN in  2007 and served in many roles, as treasurer, secretary and vice president. She was involved in every project and was a comforting voice to many newly diagnosed who sent emails or left phone messages, seeking help and guidance. Her compelling story generated many articles in the media, including my favorite the New York Times piece, A Pink Ribbon Race, Years Long, in 2011.

At conferences one of Ellen’s favorite exercises was to have all attendees stand and remain standing if they had been living with mbc for more than a year, for three years, for five years, for ten years or more than ten years. The number of women standing decreased as Ellen ticked off the years, but the audience was amazed that some were still standing at the end. They applauded loudly for those living longest, knowing now that it was possible, that others had done it and that they could dream of themselves in that number years down the line.

But seven years of living with metastatic disease for Suzanne and ten years for Ellen is still too short, still too soon. Both women hoped to see the day when mbc was truly a chronic disease like AIDS or diabetes, with the reality of living for 20 or even 30 years with a good quality of life.

I still believe in that promise, strive toward that goal and will continue the work that Ellen and Suzanne and so many others before them have started.

I’d like to end with their words, which were and always will be an inspiration:

Ellen on metastatic breast cancer and guilt:

“Metastatic breast cancer can happen to anyone. We did nothing wrong. Our medical team did nothing wrong. Metastatic breast cancer happens… at any time… regardless of your age, whether you did chemo, radiation, had a mastectomy, had a bilateral mastectomy, ate well, took vitamins, exercised regularly, prayed, had positive thoughts, had negative thoughts, got regular mammograms, did self exams religiously, had a tiny stage 1 primary tumor, or a stage 0 primary tumor, or a stage 3 primary tumor, or never even had primary breast cancer. It doesn’t matter.”

Suzanne:

People like the pretty story with the happy ending. We don’t have the happy ending. You always hear stories about women who ‘battled it’ and ‘how courageous’ they were. Cancer doesn’t care if you’re courageous. It’s an injustice to all of us who have this. There are women who are no less strong and no less determined to be here, and they’ll be dead in two years.”

My condolences to their family and friends. They will be missed.

Ginny Knackmuhs

MBCN board member

Why I Volunteer (I’m not metastatic)

I do not have metastatic breast cancer (MBC).  In March 2010 at age 62 I was diagnosed with early stage breast cancer.  A routine mammogram showed what appeared to be DCIS in my right breast.  After further diagnostic tests and consultations with three different surgeons, I had a right mastectomy and opted for a prophylactic left mastectomy. Upon tissue analysis of my cancerous right breast, my diagnosis was revised to invasive breast cancer, Stage 1. My oncologist tells me that based on my diagnostic tests, tissue analysis and treatment choice, I have less than a 2% risk of recurrence.  I currently take no medication and have oncology visits every 6 months.

So, in the absence of having metastases, why would I have an interest in volunteering with MBCN?  That was Joani’s question to me after mentioning that I was the first volunteer with whom she spoke who did not have metastases and who wanted to volunteer with MBCN.  I must admit that I was rather surprised to hear that because I learned, through the links of MBCN, that as many as 30% of all women diagnosed with early breast cancer will develop metastatic cancer.  One needs only to read the biographies of two MBCN Board Members, Ginny Knackmuhs and Shirley Mertz, to see that DCIS, Stage 0, reported by some in the medical community as 100% curable, is not excluded.  No one diagnosed with early stage breast cancer is safe from MBC.  So, it is for very personal reasons that I would like to contribute my time to this organization to help create a greater awareness of MBC and hopefully generate an interest for more funding to study the complexities of metastatic cancer.

Most importantly, I want to offer my support to the amazing women whose stories I have read on the MBCN website in both the ‘Your Stories’ section and the ‘Board of Directors’ section. The courage and strength of these women and all women and men living with MBC is truly inspirational to me. For those  having metastases, every day is filled with the worries of diagnostic procedures and outcomes, treatment choices, the effects of the emotional rollercoaster, and the successful management  of everyday family life. These are difficult challenges faced by individuals every minute of every day.

Although I don’t have MBC, I still feel a kinship with the women and men of MBCN as I feel a kinship with all individuals having breast cancer. I have often said that those of us who have breast cancer are lifetime members of a very special, unique ‘club’ where the camaraderie is unparalleled, yet no one wants to join. The strength of this bond is very visible throughout the history of MBCN and it is my honor to volunteer my time for this organization.

Elaine Botsford

I don’t like the word SURVIVOR

I don’t like the word SURVIVOR; matter of fact, I have a deep aversion to it.

Why is this word used to define those of us with stage IV breast cancer? Why is it even used to describe people who have been treated for earlier stage bc?

When I think of the word, I think of concentration camp survivors or survivors of other persecutions.  These people lived through unspeakable horrors, escaped death and continued to move forward. I haven’t earned this word and, frankly, it just doesn’t fit.

I am not a survivor of bc.  To put it bluntly, unless the proverbial bus hits me, I will die of bc.  Yeah, yeah, yeah, cancer is an internal masochist and like you all, I need to treat it as the enemy in order to live but I am still LIVING.  Survivor implies completion and finality.

I also wonder if the rampant use of the word survivor has lulled all involved in bc – patients, researchers, doctors, pharma companies and bc organizations into a false sense of complacency.  If we are all survivors then why do we need to do more?  What justification is there to fund more research and to push for more treatments?  I want the public at large, to see me as I am – a woman trying to control a deadly disease as long as possible.  I am living until I am dying.

What do you think?

Joani