What Metastatic Breast Cancer Patients Wish Medical Oncologists Knew

Medical oncologist James Salwitz writes a blog called “Sunrise Rounds.”  

In a recent post, “Secrets of Cancer Survivors,” Dr. Salwitz offers 25 tips about “dealing with the dread disease.” He acknowledges that as someone who has never had cancer he isn’t qualified to pontificate about it–his intention is only to share what he has observed over his years of treating patients.

While I agree with most of Dr. Salwitz’s suggestions, it bothers me that he makes no distinction between someone being treated for early-stage disease and those who have advanced disease. It’s not as though people with Stage IV breast cancer could have prevented or survived the disease by adhering to these 25 points. I know many people who were model patients with supportive families and wonderful friends and adorable pets. They took excellent care of themselves–they hydrated, they exercised and they journaled. They were educated and proactive–I am pretty sure at least one of them could have given me a very sound second opinion.

These patients did “uncover every stone” just as Dr. Salwitz urges. But all of them died. All of them had such spirit and heart–many left behind young children–they tried their hardest. Maybe it did buy them a little more time, but ultimately they did not survive. There is no extra credit in metastatic breast cancer–no character witnesses to testify on our behalf. Molecular biology is heartless.

Much of what Dr. Salwitz says is common sense–be on time, bring a friend, don’t let cancer take over your life, educate yourself, ensure all of your medical providers are on the same page and so on. This may improve patients’ overall experiences but I doubt it will truly impact outcomes in the clinic. So much of that depends on subtype, prior treatment, comorbidities and, indeed, what type of cancer the person has. Metastatic testicular cancer is curable; metastatic breast cancer is not.

I can’t offer survival secrets. But I would like to give Dr. Salwitz and his cohorts some ideas on improving the patient experience–particularly as it relates to those dealing with metastatic breast cancer.

RELEASE TEST RESULTS PROMPTLY. When you have Stage IV breast cancer, you generally are scanned every four months to see if  a treatment is working. Some oncologists release test results as soon as the scans are read, others prefer to go over them with the patient. Waiting for results is awful–if you expect a delay (a holiday or some scans results will be delayed) please advise your patients.

Here’s another pro tip: When making a routine call, avoid the ambiguous and ominous message: “This is Dr. So and So’s office. Call us.”  HIPPA may preclude you from saying something like “Your blood work is fine,” but it may be possible to say something like “No big deal, call at your convenience.”

WATCH YOUR LANGUAGE. Shortly after my Stage IV diagnosis, my doctor said she was going to restage me. Great! Maybe I didn’t really have Stage IV breast cancer. But it turned out she just wanted to send me for scans to see if my treatment was working. Please clarify medical jargon.

HELP ME UNDERSTAND WHERE I FIT IN. When I was first diagnosed, I only knew I had Stage IV breast cancer–it was helpful to know I had a small volume of metastatic disease and that it was confined to my bones and that this was “good.”

Now, some years down the road, I want to know what treatments might be next for me–do I have many? Just a few? What is the range of AIs, oral chemos and IV chemos? Not everyone does, but I do like to think ahead.

HAPPY PATIENTS ARE INFORMED PATIENTS. The patient who is waiting and waiting in the aptly named waiting room will likely be less anxious if they know up front you are running behind. Or if the pharmacy is behind. Or if some emergency came up. Just sitting there like a bump on a log sucks.

WHAT IS NOTHING TO YOU IS SOMETHING TO ME. For years, my hospital used a CT contrast drink that required mixing with water and consumption the night before the exam. When it changed to a different type of contrast (no water added, consumed the day of the test) it was unsettling. I was used to my routine–the one thing I can control. And now it is different. No one explained the rationale behind the change–until I asked.

That wasn’t a huge deal–but other changes are. For example, one patient I know  was filled with anxiety after her oncologist’s office called to reschedule an appointment–it turned out the doctor had to participate in a  clinical trial conference call–nothing at all to do with her.

HIRE WISELY. Your front office staff, nurses and techs are a reflection of you. Would you ever tell a newly diagnosed patient “Gee, I’m having a really bad day…I can’t figure out how to install this toner cartridge in my printer”? Well, that’s what your receptionist told me–and I could readily see that her office equipment issue was worse than my chronic, progressive and ultimately fatal disease.

AUDIT YOUR PHONE LINES. Sometimes when I call my oncologist, the “good” phone person answers. What a relief–she is a long-time employee, very friendly and I know she will give the nurse a clear message. Other times, I get the “bad” phone person. Her greeting is both hostile and brief: “Cancer Center” is all she ever says but it clear that what she means is “Why must you patients continue to inconvenience ME?” She will take down the absolute minimum of information–usually just my phone number. This generally leads to further delays because the nurse will have to call me, listen to my issue, hang up so she can consult the oncologist and then call me back.

LISTEN AND LEARN. I  have noticed my oncologists’ notes often reflect who accompanied me to an appointment–but I have never been asked about this. Sometime I am not alone–but the person who is with me had to take a work call–or stay with her young kids out in the waiting room.

I have a friend who prefers to go to her appointments by herself. If she is getting chemo, she can let the nurses take care of her–she doesn’t have to worry about taking care of someone else. Similarly, she can be direct with her oncologist without fear of upsetting her companion.

 

QUIT IGNORING US. Go into an oncology clinic and try to find information and support services for metastatic breast cancer. You will find that most of the material is geared for early stage breast cancer–the American Cancer Society, a group that supplies publications on a wide variety of cancers, just gives us a page or two in its general “So, You’ve Got Breast Cancer, Sure Sucks to Be You” brochure. Note that 90% of those in the metastatic breast cancer ranks were previously treated for early stage breast cancer–therefore about 90% of the material in the general breast cancer brochure is irrelevant. Groups like MBCN, LBBC, YSC and the Metastatic Breast Cancer Network do offer brochures but patients generally have to seek these publications out on their own.

LET’S BE HONEST ABOUT THOSE TOUGH CANCERS. As someone with MBC, I really struggle during October–all those happy pink celebrations–usually for people with the curable form of the disease. What about people with pancreatic cancer–the majority of whom are dealing with metastatic disease? How about the lung cancer patients? Lung cancer is the single largest cause of cancer deaths. Not everyone with lung cancer smoked but that is the popular assumption and probably the reason we don’t see professional sports teams donning special gear to mark Lung Cancer Awareness Month.  Rather than ignoring the “difficult” cancers, why not give us equal time? Aren’t our stories worthy of sharing?

BusChancesPLEASE FORBID YOUR STAFF FROM SAYING THE BUS THING. Last year, I was upset to learn my disease progressed. A nurse attempted to cheer me up by invoking the dreaded bus phrase: “Well, you never know, you could get hit by a bus.” This only served to make me more upset. The number of people who die from MBC annually (40,000 in the US) FAR exceeds the number of pedestrians mowed down by buses and other vehicles (something like 4,300  in the US). So actually, I have a fairly slim chance of getting hit by a bus, but  a 98% certainty this disease will flatten me–although I don’t actually have a time frame for that.

INVEST IN PATIENT COMFORT. I visited one oncology office where the front desk looked like the bridge of the Starship Enterprise–very modern and gleaming. Meanwhile the waiting patients were crammed in a tiny vestibule with chairs that were probably salvaged from the Partridge Family’s garage. Same thing in the exam room–more crummy mismatched chairs and paper gowns.  Small things make a difference!

This isn’t a list of grievances–just things I think that could be better. (I’m sure I have overlooked a few.)  I have been fortunate to be under the care of gifted oncologists and I am grateful for their empathy and skill  and all the dedicated people that work with them . I hope my patient perspective is helpful!

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Metastatic Breast Cancer & Me: Just The Facts

 

 

I like reading other metastatic breast cancer patients’ blogs. It’s always, unsettling, however, if posts abruptly stop. I always wonder what happened–is the person still around? What is going on with them?

I am very much still around and nothing too extreme is going on. For those who don’t know me, here is a brief update.

HOW LONG HAVE YOU BEEN LIVING WITH MBC?  Eight years. I was diagnosed at age 43 in July 2009. I will be 51 at the end of 2016.

DID YOU HAVE A FAMILY HISTORY? Yes. My mom died from inflammatory metastatic breast cancer at age 53. Anyone with a family history should talk to their doctor to determine an appropriate screening schedule.

DID YOU HAVE EARLY STAGE BREAST CANCER THAT CAME BACK? No. I was metastatic from first diagnosis, aka a de novo presentation. This puts me in the minority–about 90 to 95% of those with Stage IV breast cancer were previously treated for early stage breast cancer. Given my mom’s history, our Ashkenazi Jewish background and other factors (not having children, etc.), I had a medium to high risk for developing breast cancer. I did not expect to be dealing with it in my 40s. We often think of breast cancer as an old lady’s disease–but younger people (and men) can get it.

DID YOU HAVE SYMPTOMS? No. Or at least not any that I recognized as such.  I had no pain. I had a hard spot on my breast–I think I did notice this but dismissed it as  it wasn’t overly obvious and did not bother me. (I didn’t perceive it as lump.) Although my cancer had spread to my spine when found, I did not have back pain. (Some cancer patients have pain and some don’t. Anyone with pain, shortness of breath, persistent cough, unexplained weight loss, or just a general feeling something is wrong–see your doctor!)

IS YOUR CANCER HEREDITARY? No. Despite my family history, genetic testing showed I am NOT a carrier of the BRCA1 or BRCA2 mutations. Being diagnosed with cancer prior to age 40 can signify a hereditary connection, but as of 2016, the answer for me is “No.”

WHAT SUBTYPE IS YOUR CANCER? I have the most common subtype: ER/PR positive and HER2 negative. This is sometimes referred to as “estrogen-receptor positive disease” meaning that the cancer uses estrogen to grow.

KOBZometa

Me getting a very routine Zometa infusion.

WHAT DRUGS HAVE YOU BEEN GIVEN? Tamoxifen (2009 to 2011); Femara (2012 to 2014); Faslodex (Jan 2015 to April 2015); Afinitor/Exemestane (May 2015 to August 2015). November 2015 to present: Xeldoa.  The last two drugs are oral chemo drugs. IV chemo is likely next, but hopefully not soon. Also: Ovarian suppression shots from 2009 to May 2012; Zometa and Xgeva (for bone strength)  at regular intervals to the present day.

HOW ABOUT SIDE EFFECTS? I have had little in the way of side effects. Fatigue would be the biggest one. I am fortunate–everyone’s experience is different.

DID YOU HAVE SURGERY? Yes. I had a left unilateral mastectomy in May 2010 with no reconstruction. Because I had a close margin, I had radiation from June 2010 to August 9, 2010.  Surgery is not standard of care for someone with metastatic disease. Because the cancer had already spread beyond my breast, removing it was a not a curative measure. The question of someone with MBC having a mastectomy remains controversial–my doctors stressed the choice was mine. Because my disease was stable and I was in overall good health, I was a candidate for surgery. Someone who is very frail or whose disease isn’t under control would likely not be offered surgery. Reconstruction wasn’t recommended. Also in the surgical category: I had an oopherectomy in 2012.  These procedures went fine–I didn’t have any complications.

 ANY LONGEVITY SECRETS? No. I am just “lucky.” I started out with a low-volume of bone-only disease. My disease has had a fairly slow tempo to date. I can’t take credit for those things–I was just fortunate my cancer responded to the drugs. I now have extensive bone mets  (again, I am glad to say they haven’t caused me pain). At the end of 2015, I learned I have liver mets–I have been fortunate to remain symptom-free. I did not have superior doctors, more powerful drugs or a better attitude than any other patient. I just was fortunate at the cellular level.

ANYTHING TO ADD? We are all statistics of one. My experience is just that–my experience.

 

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MBCN Supports Metastatic Breast Cancer Researchers With Total Of $100,000 In Awards

Very proud to support these two gifted researchers. It was great to meet Dr. Ewald in person at his Johns Hopkins lab and learn more about the work he and his team are doing.

MBCNbuzz

Editor’s Note:Here’s our press release announcing MBCN’s 2015 research grants.  Two weeks ago, en route to participate in an FDA public meeting, three members of MBCN’s board had the opportunity to meet with Dr. Ewald and his team at Johns Hopkins. We’ll share our impressions of that visit in our next installment. Stay tuned!

Patient Advocate Group Selects Johns Hopkins’ Dr. Andrew Ewald and Baylor’s Dr. Matthew Ellis as 2015 recipients of its Metastatic Breast Cancer Research Leadership Awards

 April 10, 2015NEW YORKThe Metastatic Breast Cancer Network (MBCN) announced the 2015 recipients of its Metastatic Breast Cancer Research Leadership Awards: Dr. Andrew Ewald, associate professor in the Departments of Cell Biology and Oncology at the Johns Hopkins University School of Medicine and Dr. Matthew Ellis, the director of the Lester and Sue Smith Breast Center at Baylor College of Medicine.

The Metastatic…

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philadelphia story

Kudos to the young people at LBBC’s Metastatic Breast Cancer Conference for organizing a strong visual to illustrate that 108 US people continue to die from Stage IV breast cancer every day. My MBCN friends are in the photo towards the end of the blog–there are 108 people in that photo.

putting the grrrrr in Grimes

act

The terrors of the early AIDS epidemic. The unknowing. The limited treatments. Inadequate funding. Living within a limited timeline. Dying before your time. All while watching your friends around you die, from the very disease that you fight. With over 40,000 deaths a year during the height of the AIDS epidemic, these numbers startled the country. Shook us to our core and demanded that we all do more.

Eerily, the same thing is still happening today. At the same rate, with over 40,000 women dying of metastatic breast cancer (stage IV) each year—averaging 108 deaths a day. Again, 108 women, just like me are dying every. single. day.

I was again  reminded of this disheartening statistic by researchers as I attended Living Beyond Breast Cancer (LBBC)’s yearly Metastatic Breast Cancer Conference in Philadelphia this past weekend.  An event that took every bit of my strength, as it is tough to do…

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RIP Laurie Becklund: Journalist Wanted Big Data to Tackle Metastatic Breast Cancer

I didn’t know Laurie, but we did exchange emails this past fall as she prepared her MedX talk. She was a gifted journalist and we are truly fortunate she used her talents as a reporter to explain the urgent need for change in metastatic breast cancer outcomes and propose a Big Data innovation.

MBCNbuzz

Laurie's 2013 MedX talk Laurie’s 2013 MedX talk

Journalist Laurie Becklund died on February 8, 2015 from metastatic breast cancer at age 66. On February 20, 2015, Laurie’s byline appeared in the Los Angeles Times for the last time.

In an Op-Ed piece called “As I Lay Dying, Laurie explained how she came to be one of 150,000 US people living with metastatic breast cancer and one of the 40,000 Americans this incurable disease will kill this year.

As Laurie noted in her opening sentence, metastatic breast cancer is the kind that kills people–no one dies from early-stage breast cancer. But as Laurie discovered, cancer can come back–even decades after someone successfully completes their treatment. In Laurie’s case, her breast cancer came back 13 years after her initial diagnosis. Scans revealed the cancer was now in her bones, liver, lungs and brain. When cancer spreads outside the breast, it is no longer curable–with…

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Submit Your Writing Assignment: Part 2 of the Memoir Webinar with Abigail Thomas

I could listen to Abigail Thomas read the phone book. She is so down to earth and her advice is so practical. Really enjoyed her talk; look forward to next week’s!

MBCNbuzz

Click on image to replay the webinar. Click on image to replay the webinar.

MBCN and SHARE had a terrific time with Abigail Thomas during  Part One of our Memoir Writing webinar. She is funny, warm and honest–what a pleasant distraction on a cold winter’s day.

You can listen to a recording of her talk here; Abigail’s presentation, including several of the poems she referenced, can be found here.

Abigail gave us an assignment for next week’s session. Write two page on one of the following topics:

  • 9 Things I Do Remember & 9 Things I Don’t Remember
  • It Takes Place in Water
  • It’s Not Funny (With “It’s not funny” being the second sentence.)
  • There Are Many Things I Miss
  • I’m Afraid of the Attic
  • Any Ten Years of Your Life (Using sentences that are only three words long).

Don't be shy! Send your two pages to cbenjamin@sharecancersupport.org Don’t be shy! Send your two pages to cbenjamin@sharecancersupport.org

Abigail has graciously agreed…

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Memoir Writing Webinar With Abigail Thomas This Month

I am looking forward to MBCN/SHARE’s memoir writing webinar next week.

Part One is Tuesday, February 17; Part Two follows on the next Tuesday, February 24, 2015. Both take place at from 1:30 to 2:30 PM EST. Register here: http://www.sharecancersupport.org/share-new/learn/programs/write_your_own_memoir/

Presenter Abigail Thomas has already given us a two-page “assignment”:

  1. Take an 10 years of your life.
  2. Reduce them to two pages.
  3. Each sentence should be only three words long.

Example: He was cute. I was clueless. It seemed right.

Thomas is famous for this exercise—read what she told Oprah’s readers here.

I know that some people don’t necessarily want to write a formal memoir but would still like to preserve some memories. Why not take a look at StoryCorps site?  It offers this list of questions to help get the conversation started. Here is a video that explains how you can interview someone to preserve their story.

Find more great questions here

Find more great questions here

Great Questions for Anyone

  • Who has been the most important person in your life? Can you tell me about him or her?
  • What was the happiest moment of your life? The saddest?
  • Who has been the biggest influence on your life? What lessons did that person teach you?
  • Who has been the kindest to you in your life?
  • What are the most important lessons you’ve learned in life?
  • What is your earliest memory?
  • What is your favorite memory of me?
  • Are there any funny stories your family tells about you that come to mind?
  • Are there any funny stories or memories or characters from your life that you want to tell me about?
  • What are you proudest of?
  • When in life have you felt most alone?
  • If you could hold on to one memory from your life forever, what would that be?
  • How has your life been different than what you’d imagined?
  • How would you like to be remembered?
  • Do you have any regrets?
  • What does your future hold?
  • What are your hopes for what the future holds for me? For my children?
  • If this was to be our very last conversation, is there anything you’d want to say to me
  • For your great great grandchildren listening to this years from now: is there any wisdom you’d want to pass on to them? What would you want them to know?
  • Is there anything that you’ve never told me but want to tell me now?
  • Is there something about me that you’ve always wanted to know but have never asked?

Source: StoryCorps.org

I look forward to MBCN/SHARE’s two-part webinar. Register here: Register here: http://www.sharecancersupport.org/share-new/learn/programs/write_your_own_memoir/

And, to conclude with a three-word sentence a la Abigail Lewis:

Do It Now!

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Cancer Gets the Ken Burns’ Treatment on PBS (And Why I Won’t Be Watching It)

Whenever I see filmmaker Ken Burns in the news, I marvel at his eternal boyishness. How can someone born during the Eisenhower administration look no older than 35? Could Burns be some of sort of latter-day Dorian Gray? Is there a film locked in his attic featuring his 61-year-old doppelgänger? Has he ever considered wearing a part in his hair?

A documentary devoted to all of these details is one that I would watch. The forthcoming “Cancer: The Emperor of All Maladies” is not — at least judging by the trailer.

Burns, as executive producer, gets his name above the title. Barak Goodman is the actual director. Naturally, because Burns’ name is well known, PBS and the film production company are leveraging that connection.

Burns’ mother died from metastatic breast cancer when he was 11. “There was never a time when I didn’t know my mother was sick,” he told an interviewer. Burns ascribes his mother’s death with influencing his career — his documentaries are rooted in the past, an attempt to breathe new life into those who are long gone.

Siddhartha Mukherjee’s popular book inspired the six-hour film airing on PBS in March 2015. The book is a “biography” of cancer from ancient Egypt to the present day. According to promotional materials, the PBS effort is three films in one: a historical documentary; an intimate vérité film; and a scientific and investigative report. Perhaps we will learn how many licks it takes to get to the Tootsie Roll center of a Tootsie Pop, too.

One of the hallmarks of a Ken Burns’ documentary is length: his series on baseball was 19 hours long, his portrait of the Roosevelts unfolded over 14 hours and his landmark Civil War effort clocked in at 11 hours. Yet Burns and Goodman propose to cover cancer’s biography — all 5,000 years of it — in six hours.

The series looks at cancer’s past, present and future. Mukherjee, who appears throughout the film, anchors the historical section — I’m sure that part will be riveting.

I’m dubious about the second segment, which takes viewers to the pediatric oncology ward at Johns Hopkins Kimmel Cancer Center in Baltimore as well as the Charleston Area Medical Center (CAMC) for some wide-ranging patient encounters.

This sounds like talking to some people from Los Angeles, Cedar Rapids, Tallahassee and New York City and assuming you know what life is like in Phoenix, Dallas, Detroit or Ogunquit, Maine. Even Ken Burns limited himself to one war (Civil), one sport (baseball) and one family (Roosevelt).

If I made a documentary about cancer there would be an entire segment devoted to explaining that all cancer is not alike and even one type of cancer can be quite complex depending on stage, subtype and other factors (early-stage breast cancer, for example is vastly different from metastatic breast cancer and ER/PR+ HER2- is a different kettle of fish than triple negative breast cancer). I hope that message comes across in “Cancer: The Emperor of All Maladies.” (I would also compile some of the dumbest things ever said to cancer patients—there would be no shortage of material! Think of the DVD extras!)

From the trailer, we know that the film will wrap up with the obligatory Big, Hopeful Finish. “You saved my life, Doctor!” exclaims one patient. Researchers use words such as “stunning” and “exhilarating” to describe the future of cancer research.

I want to believe that, I really do.

Unfortunately, progress has been painfully slow on some cancer fronts. Just ask someone with advanced pancreatic cancer. Readers will recall that Mukherjee’s book ends with a reflection on the evolution of cancer treatments, from ancient Egypt to 2050 AD. “[Now] give Atossa metastatic pancreatic cancer in 500 BC,” wrote Mukherjee. “Her prognosis is unlikely to change by more than a few months over 2,500 years.”

Part of the challenge with pancreatic cancer is that early detection is almost impossible. But all U.S. people should be alarmed at the anemic level of government-supported research.

When adjusted for inflation, the NIH budget is nearly 25 percent below its 2003 level. “ASCO is deeply concerned about continued stagnation of federal research funding,” ASCO immediate-past President Clifford A. Hudis, MD, FACP said. “All types of high-quality cancer research projects are at risk of being slowed, halted or simply not pursued. In addition to the challenges this presents to basic and translational research, NCI recently announced plans to cut the overall patient enrollment target for cancer clinical trials by 15 percent, after having already scaled back and consolidated its National Clinical Trials Network.”

Hudis previously sounded this alarm in his introduction to ASCO’s 2013 Clinical Cancer Advances report: “ Federal funding for cancer research has steadily eroded over the past decade, and only 15 percent of the ever-shrinking budget is actually spent on clinical trials. This dismal reality threatens the pace of progress against cancer and undermines our ability to address the continuing needs of our patients.”

It’s possible this Ken Burns-produced cancer film will inspire outraged viewers to rush to their laptops and fire off angry letters to their elected officials about the urgent need to restore NCI funding. But I doubt it.

I’m not feeling too optimistic about private funding. The “More Birthdays” people, to offer just one example, aren’t exactly tearing up the research pea patch either.

“When I joined the Board, funding for external research grants was 22% and when I left it was down to 10%,” former American Cancer Society President Vincent T. DeVita Jr., MD told MedPage Today. As MedPage reports, Devita Jr. called the situation “scandalous,” especially since ACS has presented itself to the grassroots public as a research organization while putting its money into other projects. (Including being among the sponsors of the PBS cancer film.)

Burns, Mukhurjee and Goodman have a fourth partner on this film: Laura Ziskin. Ziskin a film producer and a co-founder of Stand Up 2 Cancer, was diagnosed with lobular Stage 3 estrogen-receptor positive breast cancer in 2004.

In 2010, she learned her breast cancer had metastasized to her liver. There is no cure for metastatic breast cancer.

Ziskin died at age 61 in 2011. As the “Meet the Creators” section of the film site puts it, “She lived courageously with the disease that ultimately took her life in June 2011.”

My mom died from inflammatory metastatic breast cancer at age 53.

My mom died from inflammatory metastatic breast cancer at age 53.

Like Ken Burns’ mother, my mom also died from metastatic breast cancer. I was 17. Now I am almost 50 — and like my mom, I have metastatic breast cancer. I will die with or from this disease.

I want a happier ending.

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What Are We Doing About Metastatic Breast Cancer: MBCN Responds to HuffPo’s Barbara Jacoby

MBCN is a founding member of the Metastatic Breast Cancer Alliance. On October 13, 2014, the MBC Alliance revealed the results of its Landscape Report, Changing the Landscape for People Living with Metastatic Breast Cancer. You can read a summary here: http://mbcalliance.org/docs/MBCA_Exec_Summ_Landscape%20Analysis.pdf.

As one of the 29 cancer organizations working together under the Alliance’s banner, MBCN wants to transform and improve the lives of people living with metastatic breast cancer. One of our goals is to increase the understanding of MBC and how it differs from early stage breast cancer. Reading Barbara Jacoby’s recent HuffPo blog on progress and metastatic breast cancer reinforces the need for the MBC Alliance as well as the ambitious scope of this project. Clearly, we have much work to do. Read on for MBCN’s rebuttal of the HuffPo piece.

MBCNbuzz

Recently, Barbara Jacoby wrote a blog post entitled, “What Are We Doing about Metastatic Breast Cancer?” In it, she made five assertions that need to be corrected with facts.

JACOBY’S ASSERTION #1

  • Public support and and research funding for those with metastatic breast cancer is more than adequate

THE FACTS: According to an extensive analysis by the Metastatic Breast Cancer Alliance, metastatic breast cancer research makes up only 7% of the $15-billion invested in breast cancer research from 2000- to 2013 by the major governmental and nonprofit funders from North America and the United Kingdom. See www.mbcalliance.org/docs/MBCA_Full_Report_Landscape_Analysis.pdf

JACOBY’S ASSERTION #2

  • Though a great amount of money and research is dedicated to early detection, people should do everything they can to get treated early because that will prevent a metastatic breast cancer diagnosis

THE FACTS: Breast cancer is an extremely complex disease. Some…

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Actress Marcia Strassman Died From Metastatic Breast Cancer

Actress Marcia Strassman was one of very few public figures to openly discuss her Stage IV breast cancer

Actress Marcia Strassman was one of very few public figures to openly discuss her Stage IV breast cancer

Marcia Strassman, the actress best known for her roles in “Welcome Back Kotter” and “Honey, I Shrunk the Kids” died from metastatic breast cancer  this month at age 66. My condolences to her friends and family.

Strassman was something of a hero to me because she was the only famous living person I knew with metastatic breast cancer. I have been on the same drugs as Strassman, so of course I took inspiration that she lived with the disease for seven years.

The actress was one of very few high profile people to talk about having metastatic breast cancer–see this Stand Up 2 Cancer video. Elizabeth Edwards was the last national figure in recent years to share her metastatic breast cancer diagnosis. When Marcia Wallace (the actress who voiced Mrs. Krabapple on “The Simpsons”) died last year, a close friend of hers said she died of breast cancer, but Wallace’s family initially denied this was the case. Understandably, Wallace’s family may not have known what happened.

Although Strassman freely acknowledged her Stage IV diagnosis, not a single news report used the phrases “Stage IV” or “metastatic” breast cancer. I hope I don’t sound petty–to her grieving friends and family I am sure this is is a small point and one that unfortunately does nothing to alleviate their loss.

But it is so important.

Two weeks ago, I participated in a meeting for Chicago-area people living with metastatic breast cancer. Attendees could put on different colored necklaces signifying their breast cancer subtypes: hormone-receptor positive, HER2 positive or triple negative. I was surprised that several women did not know this basic piece of information–one that is the road map to their care and treatment making decisions.

Had these people’s doctors told them the specifics of their disease? Had they asked? Do they understand their treatment plans? We will never make any progress against metastatic breast cancer if we pretend it is all one disease.

Saying that Marcia Strassman died of breast cancer after living with it for seven years somehow implies she died because she let her guard down and WHAM! breast cancer got her.

This is not what happened. When someone dies from breast cancer, they died because the cancer spread beyond the breast and eventually overwhelmed the body.

From published interviews, we know Marcia Strassman was a denovo metastatic breast cancer presentation. This means she was Stage IV from her first diagnosis–when her breast cancer was found, it had already spread to her bones–this is unusual, the majority of those diagnosed with metastatic breast cancer had early stage disease.

Strassman shared that she had lobular breast cancer–i.e., the cancer began in the milk-producing lobules. About 10% of all invasive breast cancers are invasive lobular carcinomas (ILC). (For reference, about 80% are invasive ductal carcinomas (IDC.) Lobular breast cancer grows in sheets–not lumps–and therefore doesn’t show up on mammograms well. (Strassman did in fact have regular mammograms, was a non-smoker and maintained a healthy lifestyle.)

With ILC, for any given stage or grade, the prognosis is similar to that of IDC. The pattern of metastases is slightly different vs. IDC–lobular carcinoma can metastasize to unusual sites, including the gastrointestinal tract, peritoneum, and adnexa (refers to uterus/ovary). Invasive lobular carcinoma is more likely to occur in both breasts compared with other types of breast cancer. ILC tends to occur later in life than IDC — the early 60s as opposed to the mid- to late 50s.

Strassman had a lumpectomy and then began standard of care for hormone-receptor positive breast cancer. According to a 2009 magazine article: “One drug, Femara, an aromatase inhibitor in pill form that Strassman takes every morning, starves tumors of the estrogen they need to grow. The other, Zometa, which is administered in monthly infusions in her doctor’s office, is a bone-building bisphosphonate that can slow deterioration in people with bone metastases.”

Strassman “endorsed” Zometa early on, but either she or the drug company chose to quietly drop the partnership. (The late Barbara Brenner, then the head of Breast Cancer Action, was critical of a 2010 SABCS luncheon featuring Strassman.)

People can do well with bone-only metastatic disease for a long time, often well surpassing the median survival time for Stage IV breast cancer which is two to three years. Although one source reported Strassman had been given 2.5 years to live upon her initial diagnosis, it’s unlikely any oncologist would have offered such a prognosis–they just don’t know. Strassman, with no visceral organ involvement at her diagnosis, would have been on the “good” end of a metastatic diagnosis.

Strassman did so well that, two years after diagnosis, a writer marveled at how good she looked: “Strassman doesn’t look like someone who’s battling a grave illness,” Linda Marsa observed.”Once her condition was stabilized by the combination drug therapy, she had surgery to remove remaining cancerous cells and several lymph nodes. Since then, bone scans have revealed no further deterioration, which is excellent news. She will take some form of therapy for the rest of her life. ‘This is cancer—but it’s a speed bump,’ Strassman insists. ‘You slow down, but once you pass it, you keep going.'”

Although bone mets can be painful and in some cases disabling, generally speaking, from what I understand, they are not immediately life threatening. When breast cancer spreads to a visceral organ–like lungs, liver or brain–that is a different kettle of fish. It should be stressed that some people can and do live with mets to these areas for a long time–but we are all different.

We don’t know exactly what course Strassman’s disease took–only that it almost certainly spread beyond her bones. But we do know one thing for certain: Marcia Strassman died from metastatic breast cancer.

Strassman and some friends talked about her Stage IV diagnosis in this 2009 interview.

Strassman and some friends talked about her Stage IV diagnosis in this 2009 interview.

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