Notes for Those Newly Diagnosed With Metastatic Breast Cancer

April 25, 2016
Learning you have metastatic breast cancer can unleash a tsunami of emotions. Fear, panic, anxiety and anger are just a smattering of common responses. How can you deal with these feelings?

 

LBBCGuide

 

 Living Beyond Breast Cancer (LBBC) and MBCN have worked together to produce a  Guide for the Newly Diagnosed. See http://www.lbbc.org/get-support/print/guides-to-understanding/metastatic-breast-cancer-series-guide-newly-diagnosed

 

Talk to your oncologist--he or she may prescribe Ativan or other anti anxiety medications. Many treatment centers also have counselors on staff who specialize in helping those dealing with a cancer diagnosis. Ask if your center has a support group for metastatic breast cancer patients. Your oncologist also may be able to connect you with someone dealing with a similar diagnosis. Oncologists–like all medical professionals–must respect privacy laws.

 

If your doctor can’t suggest a local contact, you can reach out to a peer matching program and/or metastatic breast cancer hotline.

 

Here are several to check out:
SHARE hotline and phone support groups: http://www.sharecancersupport.org/share-new/support/groups/#metastatic

Living Beyond Breast Cancer helpline and other resources: http://www.lbbc.org/node/1578

Young Survival Coalition SurvivorLink is here: https://www.youngsurvival.org/survivorlink

 

Support Connection provides emotional, social and educational support here: http://supportconnection.org/contact-us-for-support/

 

BreastCancer.org has excellent information as well as  a dedicated Stage IV discussion forum. Here you will find others with MBC  https://community.breastcancer.org/forum/8

 

BCMets was among the first online forums for people living  with metastatic breast cancer:https://www.bcmets.org

 

Inspire.com hosts an Advanced Breast Cancer board: https://www.inspire.com/groups/advanced-breast-cancer/

Most people are familiar with early-stage breast cancer. Just what is metastatic breast cancer? Here is a concise overview:

NCCN Guidelines for Stage IV breast cancer treatment can be found here: http://www.nccn.org/patients/guidelines/stage_iv_breast/files/assets/common/downloads/files/stage_IV_breast.pdf   ( This PDF was issued in 2014; several new drugs have come out in the interim.)

BreastCancer.org has a detailed guide on understanding your pathology report: http://www.breastcancer.org/Images/Pathology_Report_Bro_V14_FINAL_tcm8-333315.pdf

How do you find an oncologist? You can ask your primary care doctor for a referral. Also: consider working with an NCI designated cancer center. Here  is a list: http://www.cancer.gov/research/nci-role/cancer-centers/find

Receiving the NCI-designation places cancer centers among the top 4 percent of the approximately 1500 cancer centers in the United States. More here: https://en.wikipedia.org/wiki/NCI-designated_Cancer_Center

 

Finally, we urge both the newly diagnosed and “veteran” patients to watch

Dr. Don Dizon’s EXCELLENT presentation from MBCN’s 2013 national conference: https://www.youtube.com/watch?v=5RKCGEpk2po
Dr. Dizon’s PRO approach (Pragamatic, Realistic and Optimistic) resonates with patients. Hopefully after watching this video you will feel informed, uplifted and empowered!
Advertisements

Guest Blog: The Conversation

February 21, 2015

angel 1Guest blog by Sherri Fillipo 2/12/15  http://www.sherrifillipo.com

If you were to ask me what is the most difficult thing I deal with, I would tell you it is letting me talk about death and dying – what I do and do not want to occur both on this side of life and what I want you to do when I am on the other. If you know me, you know that I couch a lot of things in the cloak of humor because as they say, “just a spoon full of sugar helps the medicine go down..” and it’s true.  In a very southern way when I say something to my mother and it creeps up on the edge of death, she will say, “if you don’t shut up, I am going to smack you.” Don’t be alarmed. That is a very  southern thing to say, no matter how old the child is. But it is her way of saying, “I can’t talk about that or I don’t want to talk about that or talk to someone else about that…” And I get it. I really do.

I was perusing through the New York Times this morning and came upon one of their “most emailed stories.” If you don’t read the NYT, every day they will list the top ten stories at the moment that readers are emailing to family and friends. The topics vary widely and I do get a kick of what is making the rounds. It could be anything from Obamacare to some strange recipe for artichokes. You never know. But one of the top stories today was about a woman who had recently died and the title of the article was Seeking a Beautiful Death by Jane Brody.

In it, the author quotes Dr. Angelo E. Volandes,  author of a new book, The Conversation. A lot like the book I have been quoting by Atul Gawande (Being Mortal) the author says as Americans we have access to the best medical care in the world yet we often die some of the worst deaths in the world. Why?  Because we do not  have the “conversation” that would outline what we do and do not want at the end of our lives. I am not talking about those of us with terminal illnesses. I mean, as do these authors, all of us whether young or old, sick or well.

The list of questions that Dr. Volandes made (and that Ms. Brody used in her article)  is so spot-on that I don’t need to add anything to it. The questions are vital for everyone to have answers to:

  • What gives your life meaning and joy?
  • What are your biggest fears and concerns?
  • What are you looking forward to?
  • What goals are most important to you now?
  • What trade-offs or sacrifices are you willing to make to achieve those goals?

Make sure that you, as the future patient, have answers to these questions AND that you have shared them with someone who will be making decisions on your behalf. Having this information locked inside your heart is going to do no one any good if you have not shared it with family or friends.

And all of this leads me back to my chemotherapy decision. I had my last PET scan a couple of weeks ago if you remember. And the liver spots had shown a decrease in activity. I was supposed to have been back to my oncologist  by now but had to reschedule my appointment. I am planning to see her today, Thursday, to discuss future treatment. I have decided I do not want to try either of the two chemos that she suggested to me when I had such a bad reaction to the Kadcyla. I am, however, going to accept a markedly reduced dosage and determine how I feel afterward. My family knows of this decision. I am not sure how they feel about it but they accept it and stand behind me while we see what happens. We all understand that they might not make the same decision, but they understand that it is the decision I need to make for me.


Kristin: New Mom Wants to Reach Others

May 29, 2014
Kristin and Brian

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.

 

Logan1From 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

 

pic2Editor’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!


Where’s my clinical trial?

May 17, 2014

by Ginny Knackmuhs, VP of MBCN

I’m one of the lucky ones, I know.

Although I was diagnosed with metastatic triple negative breast cancer 5 years ago, I have been on the same treatment regimen since then. No progression, just blessed stability. I hesitate to write that sentence or say it out loud—afraid I’ll jinx my good fortune, always mindful of the next scan around the corner, when everything can change in an instant.

Metastatic breast cancer (MBC), also sometimes called advanced breast cancer or Stage IV disease, is incurable, but still treatable. Oncologists like to say it is a chronic disease, but with an average life expectancy of 2.5 to 3 years, it certainly isn’t chronic yet. Give us 10 or 20 years of stable treatment and quality of life and we’ll be happy to call it chronic.

ImageNext week I’m going to ASCO in Chicago, the annual meeting of the American Society of Clinical Oncologists. I’ve reviewed the agenda. Interesting and promising research will be reported on, not just in breast cancer but across the cancer disease spectrum.

One thing I didn’t find? Research papers about me, about those of us who are stable or have been NED (no evidence of disease) for years. We are defying statistics and maintaining that fragile, illusive state of tumor dormancy. Isn’t any researcher interested in running my genomic profile, sampling my blood and tumor tissue, establishing a baseline of a mets patient who is doing well? Isn’t it worth looking at patterns that might emerge from studying all of us at this stage of our disease? Why are we among the enviable few of patients living with metastatic disease? Not to collect our data seems like a lost opportunity, a cache of valuable information that should be captured.

Dr. Susan Love in speaking about her research foundation, often cites an anecdote about aviation experts in World War II. They were studying downed planes until someone suggested this: “Why not look at the planes that stayed in the air? ”

This is the 50th anniversary of ASCO and visiting cancerprogress.net reveals milestones in cancer research and treatment. Yet, there is still much room for improvement. 40,000 women and men die every year from breast cancer—metastatic breast cancer. That number is essentially unchanged in the last decade. 110 people each day, every day, a daily catastrophe that doesn’t make headlines. 110 people dying every day; 770 dying every week; over 3000 every month– from the cancer, which is still viewed as one of the ‘better’ cancers to get. We can and must do better. Even Nancy Brinker tweeted this week: “So much more work to do together to end MBC.”

So, ASCO researchers, I am ready and willing. Study me. Collect my data. I know there are others out there in my situation. Last month I spoke at a program at NYU and a few people in the audience spoke up and said they had been NED for years. Sign us up, ASCO. We’re ready to help.

I’m not a researcher or clinician, just a patient advocate, a woman living with metastatic breast cancer, who is attending the ASCO 2014 meeting and will take every opportunity to ask: Where’s my clinical trial?


Finding Financial Assistance

January 12, 2014

JarcoinsWe frequently field inquiries about financial assistance for direct medical costs (co-pays, deductibles), related non-medical costs (transportation, gas, child care) or daily living expenses (rent, utilities). Note that MBCN does not give direct aid, and, as an all-volunteer operation,  lacks the resources to provide one-on-one advice.  But we wanted to offer these general  suggestions–if you have a tip, please comment below!

Many agencies budget a certain amount of financial aid per year. Once they have disbursed their annual allocation, that’s it until the following year. Some national cancer non-profit groups can direct you to sources of aid in your community–but few offer direct financial help themselves. With some research, you can find sources of help in your community. If you lack the time or computer access to investigate these organizations, recruit a relative or friend to help you!

Don’t automatically assume you won’t qualify because you are working, have insurance or are too young or too old. One of our members offers this example: “I have bone mets and have been getting a monthly bone-boosting shot for years. Because I am employed and have insurance, I assumed I didn’t qualify for co-pay assistance and I never asked about it. But the drug maker actually has a program for people just like me that will save me thousands of dollars. Every penny counts–I wish I had looked into this sooner!”

Talk With your Health Care Team. Often a social worker or financial person at your hospital or infusion center can offer suggestions and direct you to local resources.

See What is Available. Cancer Care, a national organization has a very helpful booklet, A Helping Hand- The Resource Guide for People with Cancer. You can view the document online or order a copy. You can also contact Cancer Care at 800-813-4673 and speak to one of their professional oncology social workers, who will guide you through the process.

Check with Individual Pharmaceutical Companies. Almost every pharmaceutical company has patient assistance programs to help patients with the co-pay for specific drugs. The website is usually the name of the drug. So, for example, if you are taking Herceptin and need information on assistance with co-pays, go to  www.herceptin.com. Similarly,  for Afinitor: go to www.afinitor.com.   For Xgeva, see www.xgeva.com.

Call 211. Many communities have a 211 information and referral service, funded by The United Way.  Simply call 211  or go to : www.211.org to find help with food, housing, employment, health care, counseling and more. Available in English and Spanish.

Check the Database to Find Help in Your Area. The Cancer Financial Assistance Coalition (www.cancerfac.org) is a group of 14 organizations who provide a searchable database of resources available to you based on your diagnosis and zip code.  You simply enter both and will then get a list of organizations who may be able to help you, including those local to your state or area.

Know your Social Security Disability Options. Many people diagnosed with metastatic breast cancer, also called advanced breast cancer or Stage IV breast cancer, qualify for Social Security Disability under the compassionate allowance program. (This assumes  you have the required work history.)  This can be very helpful, if you are no longer able to work. Note that you need to have your own insurance coverage for a two-year waiting period before Medicare takes effect.  Read more on how to apply.

Early Life Insurance Payouts. A life insurance policy ordinarily pays benefits to a beneficiary after a policy owner dies. Those benefits are accelerated if they are paid directly to a chronically or terminally ill policy owner before he or she dies. Check with your insurance agent or company to see if your policy includes or offers the option. Group policies for term or permanent life insurance may also provide accelerated benefits; check with your benefits administrator.

Note that a metastatic diagnosis isn’t an automatic entitlement to an early payout; your doctor will be asked to affirm you have a terminal illness with death expected within a specific time frame (usually 12 to 24 months). Very few benefit administrators are familiar with accelerated death benefits, it’s wise to review the policy yourself and contact the insurance company directly. Here’s what some people with MBC report.

Here is just a sampling of potential sources of help:

Help Now Fund  provides emergency financial assistance to help people in active treatment with their rent and utilities: http://www.thebreastcancercharities.org/help-now-fund/

The Health Well Foundation offers assistance with copay or insurance premium payments for insured patients, based on availability of funds. They have a quick eligibility test online:
http://www.healthwellfoundation.org

Patient Access Network Foundation provides  co-pay, deductible and medication financial assistance:

PAF Financial Aid Fund Division is an independent division of Patient Advocate Foundation. It  provides small grants to patients who meet financial and medical criteria.  Patients who are interested in applying for financial assistance should start by calling this division toll free at (855) 824-7941.

Freebies and Discounts for Cancer Patients as compiled by 1 Up on Cancer:

http://www.1uponcancer.com/freebies-and-discounts-for-cancer-patients/

See More Options Here.  MBCN has a website page that also lists financial resources.

Be Persistent. You may have to make a lot of phone calls and visit a lot of websites in order to get help. There are restrictions on the type and amount of aid given and organizations often have limited funds to disburse.  But hopefully your persistence will yield results and you will have some peace of mind about your financial status.

Please share this with anyone you know who is having financial difficulty because of their cancer. If you have other suggestions based on your experience, please comment below.  Thank you!


MBCN Year in Review – 2013

December 28, 2013

by Shirley Mertz, Metastatic Breast Cancer Network President

As we approach the end of the year, I want to report to you what MBCN has accomplished in 2013– with your help and support.

We created a new logo this year to better reflect our mission—educating, empowering and advocating.    mbcn_rgbVHKversion

Here are the major activities of 2013  and how they supported our mission:

EDUCATING AND BUILDING AWARENESS

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

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

•  Our 7th annual national metastatic breast cancer conference in cooperation with experts at MD Anderson in Houston, Texas.  Over 225 patients and caregivers attended the September 20-22 event.  All the presentations were recorded and are on our website.

brochureMBCN partnered with Living Beyond Breast Cancer to develop and write an expanded booklet called, “Guide for the Newly Diagnosed Patient.”  It can be ordered for free or downloaded on our website.  We urge members to take copies to their oncologist’s office so patients can benefit from it.

•MBCN expanded the amount and kind of information on our website (mbcn.org).  There patients can find our national conferences’ recordings; info about clinical trials, pain and supportive services; financial resources,  inspirational stories from those living with our disease; and advocacy strategies.

•Our new T-Shirt was popular and part of our October 13 MBC Awareness Day campaign.tshirt

•Our short videos were also well received, especially during October.

how do you live

How do you LIVE with metastatic breast cancer?

useyourvoice

Use Your Voice

thingspplsay

Dumb things people say about metastatic breast cancer

caregivers

Celebrating caregivers

 

•Each day in October we posted a Fact a Day on Facebook for you to share with friends and spread education and awareness of living with metastatic disease. See the 31 Days of October.

• At the San Antonio Breast Cancer Symposium (SABCS), MBCN was part of a panel that explained clinical trials to other patient advocates and the challenges facing metastatic patients to decide and participate in clinical trials.

•MBCN partnered with Novartis to develop and edit an online magazine for caregivers of metastatic breast cancer patients. cate


EMPOWERING

 •At our annual conference, a special session on how to advocate on behalf of the metastatic community was developed and presented to attendees.  An “Advocacy Kit,” complete with instructions and tools, is on our website for any patient, family member or supporter to use.

•MBCN has guided, informed and empowered several patients and/or their supporters who want to host an educational and/or fundraising event in their community or local hospital.  See our fundraising section on the website.  MBCN provides free materials for these events.

•MBCN encouraged its members to participate in quality surveys that sought to identify challenges and concerns of patients.

•MBCN provided opportunities for our members to speak out in videos and focus groups, such as these:

livingthereality

Living the reality of metastatic breast cancer

 

livingwithmbc

Living with metastatic breast cancer – MBC Alliance video

ADVOCATING

alliance • Based on a vision by MBCN, the Metastatic Breast Cancer Alliance was formally announced to the public this year during our Metastatic Breast Cancer Awareness Day campaign.  The MBC Alliance consists of 16 breast cancer organizations who have joined together, driven by a vision to transform and improve the lives of women and men living with metastatic breast cancer.  See my remarks at our first face-to-face meeting.

 •MBCN partnered with SHARE to develop and participate in a webinar for experienced and new oncologists entitled, “Communicating Hope and Trust:  The Patients’ Point of View.”

•MBCN has a seat on the Board of Directors of the National Breast Cancer Coalition.  We advocate on behalf of Breast Cancer Deadline 2020 to find the causes of metastasis and participate in strategic planning and implementation of that goal.

•MBCN served on the Global Advocate Planning Committee to organize and plan sessions for global advocates at the Advanced Breast Cancer 2 Global Conference in Lisbon where doctors discuss and decide on treatment guidelines for the disease.  The advocates discussed common global challenges facing patients with metastatic disease. MBCN reported on the findings of a US survey of metastatic breast cancer patients that asked patients about quality of life issues.

Those are the highlights of 2013 and we are planning an ambitious year for 2014!

If you have questions for us, or ideas you want to share, please leave your comments below or contact me directly at s.mertz@mbcn.org.

Sincerely,

Shirley Mertz
President, Metastatic Breast Cancer Network

Metastatic Breast Cancer News from San Antonio: Stay Tuned

December 10, 2013

reblogged from Katherine O’Brien’s Ihatebreastcancer blog:

Metastatic Breast Cancer News from San Antonio: Stay Tuned.