Kristin: New Mom Wants to Reach Others

Kristin and Brian

“I wanted to share my story in hopes of reaching others, especially young women like myself, who are dealing with this diagnosis,” writes Kristin, a 32-year-old mom who lives in Davis, CA.

 

Here is her story:

 

My name is Kristin Todd and I am 32-years YOUNG. In July 2013, I was 34 weeks pregnant with our first child (a boy!). My husband, Brian, had pointed out a lump in my breast to me and I brought it to the attention of an OB during one of my routine pregnancy checks.

 

This first doctor essentially blew off my concerns, telling me I was too young for breast cancer and regardless, they wouldn’t do anything about it until after the baby was born. Wrong on BOTH counts. Being in the medical field myself (I am a nurse practitioner), I didn’t accept this answer. I brought the lump to the attention of my regular OB-GYN who shared my concern and got me in right away for an ultrasound and biopsy. My husband and I were stunned into silence when we received the news following a wonderful “Babymoon” to Santa Barbara the previous weekend.

 

From that point forward, it was a mad dash to see doctors and make decisions quickly both for myself and for our unborn child. I went ahead and at 36 weeks pregnant, I had a lumpectomy and lymph node dissection. The day after my surgery, I was readmitted to the hospital with a kidney stone. A week following my surgery, at 37 weeks, I was induced and gave birth to our beautiful baby boy, Logan Kristopher.

 

Three days after giving birth, I had my port placed for chemotherapy and had my first PET scan which delivered unbelievably devastating news…liver and bone metastases. I was crushed and was at a loss for how to feel. Here I was supposed to be enjoying my first few days of motherhood and instead I was given more bad news.

 

A week after my son was born, I began chemotherapy. (I am ER/PR+ and HER2 -.) Since then, I have had 6 rounds of A/C chemotherapy and my PET scans since have shown great results. My liver mets have resolved and the majority of my skeletal mets have as well.

 

People have asked me how I coped with having a newborn and doing my first chemo treatments. I had amazing family support.  My my dad is a family physician in Florida and he has been a huge help when it comes to getting the best information and  care out there. Without him, I would not have the benefit of several expert opinions whenever there is a decision to be made.

My mother retired from her job in Georgia and moved out to California right away when I was diagnosed and my mother-in-law (also from Georgia) dropped everything to come help. So between the 2 moms and my husband, they took all of the night feedings so I could get a lot of sleep. My sister, cousin, and friends also took turns flying out from the southeast to help in any way they could.

 

I’m slowly getting use to my “new reality” as I like to call it. Life with Stage IV breast cancer is a roller coaster. My family and I live for the good news and support each other with any bit of not-so-good news.

 

But overall, my son is the absolute light of my life and the best motivation for doing everything I can to stay well and healthy for him. I so believe in the power of the mind and I have so much love and support around me along with my own positive outlook that I know I can get through most anything.

 

Thanks for letting me share my story. If it gives someone else hope, that’s all I can ask for.

 

 

Kristin Todd

 

Editor’s Note: Kristin, who works primarily with cardiac patients is currently back at work full time. She’s been able to connect with other young moms dealing with metastatic breast cancer via a Facebook group: “Thriving with Advanced Metastatic Stage 4 Breast Cancer.” She learned of the Metastatic Breast Cancer Network via a Google search. We’re glad she found us! If you enjoyed Kristin’s story, please consider sharing yours.

Email your story (500 words maximum) to us at mbcn@mbcn.org. Include your name and phone number–and don’t forget the photo!

Bill Keller’s Misguided NYT OpEd Piece: MBCN Responds

Dear Editor, NYTimes:

Bill Keller’s op-ed piece on “Heroic Measures”  (January 12, 2014)  contains egregious factual errors. It also misrepresents what metastatic breast cancer is and how it is treated.

Whether you agree with Lisa Bonchek Adam’s decision to chart her cancer via social media, it’s always helpful to get the facts right.  While it is true that Adams was diagnosed with early stage cancer seven years ago, she has not been in a seven-year “public cage fight with death.”

When she was diagnosed with metastatic breast cancer (MBC) a little over a year ago, it was then that  her cancer became incurable–but still treatable—for now. For now, Adams is LIVING with metastatic breast cancer, as are 150,000 other US people. As Adams correctly told Keller, the course of the disease can involve many periods of relative stability, interspersed with serious complications and side effects. To live with MBC is to embrace uncertainty—you don’t know if a drug will work,  how long it  will work and how you will tolerate it. You just take it one day at a time. There is no wrong or right way to live with metastatic breast cancer–there is only the way that works best for YOU.

MBC, also known as Stage IV, is the most advanced form of breast cancer, where cancer has spread to distant organs. It is not an automatic death sentence, although it is true some will succumb quickly. With MBC, treatments focus on controlling–but not eliminating–the cancer while maintaining a good quality of life.  Some oncologists say that MBC is becoming a chronic disease, but with an average life expectancy of 2-3 years from the metastatic diagnosis, much work obviously remains to be done.

Keller compares his aged father’s cancer death to Adams’ situation, as if there were no difference between a 44-year-old woman with a family and a treatable disease and an older man at the end of his life. Yes, Adams is in crisis now, but she may emerge to a new level of stability–again, to live with MBC is to embrace uncertainty.

Just because we have a terminal diagnosis doesn’t mean we are going to pop off at any moment. Some patients with MBC do very well with the combination of standard treatment and palliative care and can live 5 or even 10 years past diagnosis. So, to quote Yosemite Sam, “Back off, ya varmint!”

Keller clearly does not understand clinical trials, either. We can thank patient participation in clinical trials for all new drugs—breast cancer and otherwise.  Doctors use clinical research studies to compare current treatments with potentially better ones.

Keller implied that Adams’ has one foot in the grave and one foot on a banana peel—and that a clinical trial was her last hope or that she was wrong to be an “eager research subject.” From what Adams has shared on line, she has more treatments left to try. We owe people like Adams a huge debt of gratitude for being in a clinical trial—and the very real need for more people to be in clinical trials would have made a far better Op-Ed.

Had Keller read Adams’ blog more closely, he would know she has always spoken out against the breast cancer warrior mentality and the destructive message of the pink breast cancer community that you are a failure if you are not a “survivor.” Also, any proactive metastatic breast cancer patient will have many conferences with his or her health care team.

If Keller had truly wanted to contribute a compelling Op-Ed on death and breast cancer, he should have called attention to “Tackling a Racial Gap in Breast Cancer Survival,” an article the Times published on December 20, 2013.

“Despite 20 years of pink ribbon awareness campaigns and numerous advances in medical treatment that have sharply improved survival rates for women with breast cancer in the United States, the vast majority of those gains have largely bypassed black women,” writes Tara Parker-Pope. “Although breast cancer is diagnosed in far more white women, black women are far more likely to die of the disease.”

Where is the outrage over THAT? This year, 40,000 people in the US will die from metastatic  breast cancer.  If this is the “inevitable fate” Keller references, we say no thank you!

For more information on metastatic breast cancer, please see www.mbcn.org

Please start by reviewing Dr. Don Dizon’s excellent talk,  “Living with MBC,” presented at MBCN’s 2013 conference: https://www.youtube.com/watch?v=5RKCGEpk2po

Sincerely,

The Metastatic Breast Cancer Network

Dr Don Dizon answering a question during his talk on Living with MBC.

Meet Shirley Mertz, MBCN’s New President

By Katherine O’Brien

Shirley at the 34th Annual San Antonio Breast Cancer Symposium

At a 2009 breast cancer seminar, I met two Chicago-area MBCN volunteers: Joani Gudeman and Shirley Mertz. I had never met another person with metastatic breast cancer. Joani and Shirley made me feel less alone. Their activism inspired me.

The meeting was held in a hotel ballroom on a Sunday morning. There were several hundred people in attendance and most were casually dressed. Shirley, however, was  professionally attired in a perfectly tailored suit. Who would get dressed up on the weekend? Certainly not me. But there was Shirley, dressed for success. Although she was not part of the medical panel fielding questions, Shirley was summoned to the stage to read a proclamation about October 13,  National Metastatic Breast Cancer Awareness Day.

In 2008, Shirley and her fellow volunteer, the late Susan Davis,  launched MBCN’s drive to formally establish October 13 as National Metastatic Breast Cancer Awareness Day. In October 2009, they succeeded: The Senate and House each unanimously passed a resolution to support that designation.

I remember watching Shirley striding purposefully to the stage. She absolutely belonged up there–she commanded attention and respect. Almost a year later, I met Shirley again in Indianapolis at MBCN’s  2010 Annual Conference on Metastatic Breast Cancer. Again, I was struck by Shirley’s leadership–she moderated several sessions. As I got to know her a little bit better, I saw flashes of Shirley’s humor–and that made me like her even more. She’s serious in her advocacy efforts, but she enjoys a good joke and will often tell one on herself.

In 2011 and 2012 as I did more volunteer work with MBCN, I learned that Shirley, a former high school principal from northwest suburban Chicago, also earned a law degree. I don’t think Shirley divulged this information–she did share, however, that she is a proud graduate of the National Breast Cancer Coalition’s (NBCC) Project Lead, a science training program for activists. Shirley became a consumer reviewer for the DOD Breast Cancer Research Program and advocate for national health care reform. In 2008, she personally asked Senator Evan Bayh to sponsor a Senate Resolution for MBC Awareness Day and then co-chaired the team that traveled to Washington to lobby for Congressional passage. In 2011, she was honored as a Champions of Change in breast cancer at the White House.

Shirley Mertz with the University of Chicago’s Olufunmilayo Olopade, MD

Shirley was diagnosed with metastatic breast cancer in 2003, twelve years after being treated for DCIS. Like me, she wanted to meet other people dealing with a diagnosis of metastatic breast cancer. She was appalled to learn how few resources existed and determined to make a difference. “My passion is being a voice for metastatic breast cancer patients,” Shirley told me. “I have not hesitated to share my experiences with this disease because I want to motivate others to speak up. Joining together with a focused message, metastatic breast cancer patients can improve outcomes in the clinic.”

Shirley’s own story illustrates some key messages for people with metastatic breast cancer. “Allow yourself time to cry, then put on steel armor and learn to take charge of your care,” Shirley told a University of Chicago interviewer. ” You must be your own advocate.”

After her recurrence, Shirley’s former oncologist based her treatment on the biological characteristics of the 2003 tumor. But it was clear the treatment was failing. Shirley lobbied for a new biopsy–and ultimately got one, after pursuing a second opinion. The biopsy revealed the pathology of Shirley’s cancer had changed–it wasn’t the same subtype as her original diagnosis.   “A great oncologist will never be offended if you ask for a second opinion,” she says. By sharing her story, Shirley has helped untold people.

Earlier this year, MBCN named Shirley as its president. In addition to targeting underserved areas of the US, she’s committed to raising the group’s profile with metastatic researchers. “If scientists could meet us and personally hear our needs, that would be a powerful message,” she says. “With the board’s help and enthusiasm, we will take our commitment to patients to another level.”

You go, Shirley!

Katherine O’Brien is MBCN’s Secretary and Public Relations Chair