Metastatic Breast Cancer: Key 2015 Dates

Happy New Year everyone! Here are some key 2015 dates for people with metastatic breast cancer. We’ll be updating this post as the year goes on–if you have a suggestion, please comment below. Here’s to a great year.

—The Metastatic Breast Cancer Network

JANUARY

January 15th (Applications Open)

Camp Kesem is a network of FREE college-student-run summer camps and social circles for kids with a parent who has (or has had) cancer. The one-week sleep away camps are a chance for kids ages 6-16 to have a fun- and activity-filled week and just be kids.

PATIENT PERSPECTIVE: Since 2001, Camp Kesem has grown from a single camp to 62 active chapters in 29 states. We hear great things from happy campers–here is a map of camp locations.  Apply online starting January 15 for the 2015 session.

MARCH

March 6th-8th, 2015 (Houston)

Young Survivor Coalition (YSC) Summit | This National Summit is a three-day conference featuring inspirational speakers, workshops addressing the unique issues that young women with breast cancer face, and special wellness activities.

This event targets young women diagnosed with breast cancer before their 41^st birthday, their co-survivors and healthcare providers. While its focus isn’t exclusively metastatic, four  break-out sessions are dedicated to people living with Stage IV.

PATIENT PERSPECTIVE: According to YSC:  “We  recognize that young women diagnosed with metastatic breast cancer face a unique set of questions, challenges and issues that may not affect an early-stage breast cancer survivor. For that reason, we created breakout sessions specifically for young women with metastatic breast cancer. You’ll learn more about metastatic breast cancer research updates, complementary and integrative medical options and leaving your legacy. You will also have the opportunity to take part in an open discussion session where you can ask questions of other young women with metastatic breast cancer and share your own experience.”

APRIL

April 11th-April 12th, 2015 (Philadelphia)

9^th Annual Conference for Women Living with Metastatic Breast Cancer | Living Beyond Breast Cancer’s (LBBC)  Annual Conference for Women Living with Metastatic Breast Cancer offers up-to-date information, support and practical resources to help you live well with stage IV breast cancer. The event will take place at Loews Philadelphia Hotel.  REGISTRATION IS NOW OPEN.

PATIENT PERSPECTIVE: LBBC will provide live Web streams of the conference’s keynote presentations. We’ll post a link when one is available.

• NEW: early check-in and Welcome Reception on Friday, April 10
• NEW: special Caregiver Rate for friends and loved ones to attend with you
• Early Riser’s yoga class on Sunday morning

April 18- April 22, 2015 (Philadelphia)

American Association for Cancer Research (AACR) Annual Meeting 2015

The mission of the American Association for Cancer Research is to prevent and cure cancer through research, education, communication, and collaboration. More than 18,500 people from 74 countries attended the 2014 meeting–this is one the largest gatherings of people working on cutting-edge cancer treatments. AACR’s  journals include Cancer Discovery; Cancer Epidemiology, Biomarkers & Prevention; Cancer Immunology Research; Cancer Prevention Research; Cancer Research; Clinical Cancer Research; Molecular Cancer Research; and Molecular Cancer Therapeutics. Patients are probably most familiar with AACR via its Cancer Today magazine.

AACR has a special program for advocates: MBCN will be participating!

MAY

May 29th – June 2nd, 2015 (Chicago)

ASCO | MBCN board members will be among the 25,000 attendees at the 2015 American Society of Clinical Oncology (ASCO) Annual Meeting at McCormick Place in Chicago. ASCO isn’t just about breast cancer. There are sessions on gastrointestinal cancer, genitourinary cancer, head and neck cancer, lung cancer, leukemia, lymphoma and myeloma, melanoma and more. If oncologists put on Lolapalooza, this is what it would look like.

PATIENT PERSPECTIVE: ASCO targets clinicians–the people who take care of people with cancer. The size and scope of ASCO’s annual meeting can be overwhelming–SHARE and LBBC usually offer free webinars highlighting key developments –these can be invaluable for people with metastatic breast cancer looking for the inside scoop on the latest treatments and cancer research. ASCO Connection, the society’s networking site,  welcomes patient advocate comments/participation.

 SEPTEMBER

September 19-September 20, 2015 (Denver)

Living Beyond Breast Cancer (LBBC) Annual Fall Conference  offers a metastatic track. Registration is slated to open in June.

MBCN in Times Square Oct. 13, 2014

OCTOBER

October 13th is National Metastatic Breast Cancer Awareness Day. Stay tuned for information you can share, conferences, webinars and other awareness building events.

October 16-October 17, 2015 (Boston)

The 2015 Metastatic Breast Cancer Forum at the Susan F. Smith Center at the Dana-Farber Cancer Institute in Boston will be presented this year in conjunction with the Metastatic Breast Cancer Network.  (There will be no Sunday session.)

We are very excited to be working with Dr. Eric Winer and the excellent staff at Dana-Farber.

We will be offering a limited number of scholarships, with preference given to those who have not attended previous conferences.

MORE TO COME: Stay tuned for more details on hotels, registration, etc.

DECEMBER

December 8th-12th 2015

San Antonio Breast Cancer Symposium With more than 7,500 participants expected from 100 countries, this is the world’s largest breast cancer meeting. Although SABCS covers all aspects of breast cancer,  in recent years it has expanded its metastatic breast cancer focus.

For the past 18 years, Alamo Breast Cancer Foundation (ABCF) has conducted its Hot Topics Mentor Sessions at SABCS. Held on 3 consecutive evenings, these sessions feature expert speakers and panelists who review and explain the most compelling presentations.

MBCN board members are proud to be among 170 patient advocates in attendance. The scientists, pathologists, radiologists, surgeons, medical oncologists, geneticists, pharmaceutical representatives at SABCS stress translational research that brings basic lab research to patients as quickly as possible.

PATIENT PERSPECTIVE: Cutting edge research news is announced at SABCS. Because the meeting targets medical professionals, many of the presentations are highly technical. SHARE and LBBC usually offer free webinars highlighting key developments in easy-to-understand terms; Alamo Breast Cancer Foundation also has excellent overviews. If you are interested in participating as a patient advocate, check out ABCF’s Mentor program.

Did we miss an important event? Please share below in the comment section.

Andrea: My Support Network is a Blessing

Andrea relies on TEAMSOSA to help her deal with her metastatic breast cancer diagnosis. In April 2014, she started this blog, which she updates on Sundays.

Read on to learn more about her story.

My name is Andrea and I am 37 years old. After I noticed significant breast pain, I had a mammogram and biopsy, and I was diagnosed with Invasive Lobular Carcinoma, that metastasized to lymph nodes, in late February 2014.

My doctor recommended a double mastectomy but then a PET scan revealed metastasis to my vertebrae, belly, sternum, and clavicle, as well as additional lymph nodes. Rather than surgery, I began chemotherapy in April. I have a significant family history and found to be a BRCA1+ carrier.

AN EXTENSIVE SUPPORT NETWORK

Since I do not live close to my family, I decided early that I would have to rely on my friends and “work family.” I have been blessed to have an extensive support network through my job. Working for 15 years in the same department has given me opportunity to experience growth as a person and a professional, and grow with my work family as they establish their lives and careers. These wonderful people are my primary support system and have organized fundraisers as TEAMSOSA.

MY CALIFORNIA ROOTS

I am originally from California’s Central Valley, and came to the Bay Area to attend college and start a career in local law enforcement and the Courts. During the past 15 years, I have obtained my Masters Degree in Criminal Justice while working full-time in a high stress, high demand workplace. I have established long-term personal relationships with coworkers who have supported me as I progressed in my career. Over time, we have become family, and watched each other experience personal joy and hardship. As a member of that community, my coworkers have stepped up with T-shirt fundraisers and luncheons. TEAMSOSA is my support community here, and they help with everything from chemotherapy appointments, to daily visits, or food runs.

MY SUPPORT SYSTEM

I am single, and have no children, hence the need for a support system. Right after the diagnosis, I decided I was not doing this alone. I communicated with close friends and family about the new journey, and nearly everyone has been overwhelmingly supportive. I sent an email to my workplace announcing my leave of absence and support has come from people I never expected it from. I was also placed in contact with retirees and other breast cancer survivors, and learned quickly how this disease has touched so many lives.

MY FAMILY HISTORY

There is an extensive cancer history on mother’s side including ovarian cancer, breast cancer, colon cancer, and lymphoma. I have two sisters and two nieces, who are aware of my diagnosis and what to inform their doctors for their health. Also, my mother was treated and diagnosed for breast cancer approximately 20 years ago. She is a retired registered nurse, and cancer-free.  My father has battled heart disease all of my life.  My parents have been supportive with frequent visits and regular check-ins, and wear their TEAMSOSA shirts with pride.

CANCER SUPPORT COMMUNITY

I participate in activities at the Cancer Support Community; my doctor’s office provided me with their information. Their facility and staff are courteous, professional, and empathetic. The Center is welcoming, and there are so many stories to be told within their walls. I attend a weekly support group, which has been very helpful in answering questions, as well as observing those progressing to wellness after recovery. I have met two other women who are my age, and also met other women who have gone through treatment for breast cancer. The resources there include exercise, creative activities, and a library, among many others.

MY TREATMENT

I was diagnosed fairly recently– in February 2014. I am undergoing chemotherapy as part of neoadjuvant therapy. My treatment plan includes surgery and radiation. I have had four (of six) cycles of Taxotere and Cytoxan.  The side effects have been rough, but manageable, through medication and rest. Mainly, I have experienced heartburn, hives, and fatigue. In between treatments, I try to get out of the house once a day, whether its to do an errand, or attend the CSC. I attend various sporting events with friends, including SF Giants baseball games (I’m a huge fan). My friends have been very good about inviting me to lunch or to go for walks, which reminds me daily that I am not alone.

WHAT PEOPLE SHOULD KNOW ABOUT BREAST CANCER

When I was first diagnosed, I took the time to individually tell friends and family. Each person provided me with an emotional response, as well as hope. No one said this wasn’t treatable. Everyone said it was going to be rough. One person said “it would be a bad year,” and another reminded me “it was not a brain transplant.” Along with some other sage advice, I was grateful to learn I had the support of so many who were aware this disease was TREATABLE.

While most women, through early detection or genetic testing, have treatment options that eventually end, I am aware Metastatic Breast Cancer requires long-term treatment. I am aware of the options I may no longer have because of the progression and behavior of the disease. However, I will continue to do what I can, until I cannot.

Andrea

 

Editor’s Note: If you enjoyed Andrea’s story, please consider sharing yours. Email your story (500 to 800 words, max) to us at mbcn@mbcn.org. Include your name and phone number–and don’t forget the photo!

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!

Lessons from a breast cancer widower

By David Imondi

I dread October. I change the TV channel when all the pink ribbon commercials come on. I understand why my wife hated pink ribbons. There was nothing pretty or delicate about the disease that ravaged and killed her at age 47. My wife was Dr. Suzanne Hebert Imondi. She was your vice president. She was my true love.

Years ago, Suzanne asked me to share my experience as a “cancer husband” to help MBCN members. I never did. Now, I write this as a heartbroken widower who is trying to raise two young kids without their beloved mom.

I thought I was a good Cancer Husband. I spent countless hours in waiting rooms in cancer centers from Boston to Houston. I slept sitting up for weeks in uncomfortable hospital visitor chairs by Suzanne’s bedside. I kept a large binder with me with copies of PET scans, path reports and lab values. I used a label maker to make sub-divisions and taped physicians cards to the inside cover. In retrospect, I think I was trying to control a disease that could not be controlled.

If I could offer some meager advice to all of those battling metastatic breast cancer and their loved ones, it would be to try to hold on to those moments of happiness when they come. Suzanne and I lived from scan to scan. We would go over the PET scan results and anxiously highlight the areas that were too many times described as “lesions that could represent further metastasis.” Don’t wait for “clean scans.” They may never come. Go to Disney or rent a villa in Italy before the next scan. Lean hard into joy. Sometimes we forget to live while we’re trying not to die.

Please write lots of notes and record videos for your loved ones. Suzanne did not like the finality that those things implied. But now I see how our brave, beautiful kids cherish every note she ever wrote to them. It helps keep them constantly connected to her.

Lastly (and most difficult for me to discuss) remember to say everything you need to say to the people you love. Even though Suzanne lived over 7 years from her initial metastatic breast cancer diagnosis, I thought we had more time. The end happened more quickly than I expected. I thought I had had more time to remind her that even with no hair and draped in hospital green, she was the most beautiful girl I had ever seen. I thought I had more time to tell her how she was the best thing to ever happen to me. I thought I had more time to just hold her and tell her how much I loved her.

I am sorry I don’t have more to offer all of you brave women fighting this disease. Please do know that your courage inspires many. Know that your Cancer Husbands, like me, would give their lives to lift your pain even for a minute. Most of all, know that you will never, ever be forgotten…..

Editor’s note: Thank you, David for this beautiful and heartfelt letter. If you are reading this and are also a single father due to cancer, you may be interested in this website: http://singlefathersduetocancer.org/home.do

Thoughts on my 39th birthday

Guest blogger: Sandra Bishnoi

Editor’s note: Sandra wrote this piece on October 16, her 39th birthday and shared her thoughts on attending the recent MBCN conference.

The last couple of days have been very memorable. I traveled back to Chicago on Friday October 12 for the 6th Annual Metastatic Breast Cancer Network Conference. This is the first breast cancer conference that I have attended since my diagnosis and needless to say, I was a bit nervous about the experience. I knew that I was bound to learn a lot about new therapies and treatments for metastatic disease, but I was concerned about the emotional toll that the conference might bring. I was nervous about meeting young women like me, struggling to balance a life-threatening disease during the so-called “prime” of our lives.

I have to say, that I met so many amazing and wonderful women at this conference. I met women in their 30’s who had been battling this disease for over 8 years. I cried when a woman described her fear of dying before her 5 year old son was able to grow up, but who also found the strength to make dramatic life changes and truly “live” her life. There are so many people out there who are struggling with one treatment after another to try and extend their life until they can find the treatment that will lead to a “cure”. We really don’t talk about “cures” when it comes to metastatic cancer, not because we don’t want one (or many) but because of the fear of not being able to find one.

I met a lot of angry women at this conference, too. They are pissed off about having to face death before the age of 40, mad that most of America is more fixated on “boobies”, breasts, and “tatas,” than the fact that 40,000 men and women are DYING of breast cancer every year. And they are angry that only 5% of all of the money raised by the “pink” organizations actually go to metastatic disease. I know that this is sadly a marketing issue, but somehow it needs to change.

I also learned some good technical information. I heard a good talk from Dr. Steven Chmura at the University of Chicago, who spoke about “oligometastasis” and breast cancer. This was a term that I had never heard before, but a category that I fit into. Oligometastasis encompasses those patients with limited metastatic disease, specifically it is those that have fewer than 5 metastatic lesions of which are 5 cm or less. The promising news was that the 5 yr survival rate for oligometastatic patients was 59.6% in a U of Chicago study, compared to 11.6% for patients with full-blown metastasic disease. I need to do some research on this, but I found it to be exciting news.

My two major takeaways from the conference were:

1) I am (unfortunately) not alone when it comes to being a young woman with metastatic disease and

2) There is a lot of work being done in the area of breast cancer treatment, which will help provide additional options for those suffering from this disease.

Overall, I left the conference with a lot of hope and some sadness. Sadness for those that I met that are truly fighting their cancer with everything they’ve got and suffering tremendously in the process. Let us all hope that we do find something that can change the outlook for those with metastatic disease before it is too late for these strong, courageous women.

MBCN at C4YW

We travelled to New Orleans this past weekend to exhibit at the C4YW (Conference for Young Women Affected by Breast Cancer).  MBCN has always attended this conference as part of our mission to reach out to all those with metastatic breast cancer, but I was a newbie, a little wary of being drowned in Pinkness, since the conference is meant for young women at all stages of breast cancer. I was pleasantly surprised.

Yes, there was more than enough pink. The guy with the pink cowboy hat, sporting a pink bra, was parading around, but mercifully we avoided him. And there were more than a few people advocating to save the boobies, move beyond boobs, keep a breast, etc, etc. And I’m sure many of the attendees don’t realize that 20-30% of them will be joining our not-so-popular club.

But, to get to the good part:  a few workshops were offered for metastatic patients and at our booth we met the most wonderful young women! We had time to hear their stories and struggles, to offer advice, to share resources and information. I feel bad enough to have been diagnosed stage IV at age 58 (the median age), but it’s sobering to meet young women with metastatic disease who say:

“I was 29 when diagnosed.”

“I was pregnant when diagnosed.”

“I have two kids, ages 3 and 1.”

They are concerned, worried, overwhelmed, but also vibrant, determined and strong.

It renewed my spirit to meet them and increased my commitment to MBCN and to advocating for more research and more answers to what causes metastases and how we stop it; to raising awareness that breast cancer is not a pretty pink cheerleading event and early detection is not the cure; and to helping all those newly diagnosed with mbc to have the information they need to make the best treatment and lifestyle choices and be their own best advocate.

To my shock, even the pink cowboy, who is a strong Komen supporter and disciple of the positive pink, early detection-mammogram message,  tweeted this on Saturday: “Because my cancer is metastatic, don’t treat me like I’m a dead man walking.”  Hey, sounds like he understands our side of the breast cancer story. Is the pink haze clearing a bit? Is the message about metastatic disease slowly getting out there?

Ginny

MBCN board member