Research Advocacy: Try This at Home!

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Here is an article I wrote for the Komen Advocates in Science bi-monthly newsletter. I hope you enjoy it.

Cómo crear una rutina si trabajas desde tu casa? | Moi
As someone living with metastatic breast cancer, I’ve been sheltering in place and avoiding physical contact with the outside world.
 
Since the COVID-19’s arrival, nearly all of the scientific meetings I’ve been scheduled to go to the first half of the year have either been canceled, postponed or changed to a web-based format. These meetings provided me with opportunities to connect with researchers and clinicians on research progress and priorities.  Also, to reconnect and meet my fellow research advocates, which is always a great source of inspiration and strategies to improve my advocacy efforts.
 
Right now, I’m concerned about a number of things related access to care.  We know access to care greatly impacts our quality and quantity of life.

Some important clinical trials are on hold and not enrolling new patients.Research dollars at the National Cancer Institute may be in jeopardy, as the government decides where to draw funds from to fight the pandemic.  Studies may be delayed or canceled.

There are researchers who have had to postpone their research due to campus closures.  Basic researchers and their research are being hit particularly hard by these closures.

Some patients are reluctant to go to clinics for tests, scans and/or regular visits.

Some cancer patients are unable to access pain medication because getting a refill requires a face-to-face visit.
Cancer patients undergoing procedures or needing to be in the hospital are unable to have someone with them. 

Hospitals and clinics are closing access to all except the patient making it difficult for cancer patients to receive the emotional support they need from friends and families during clinic visits and hospital stays.

Cancer patients, who have been laid off, have thought about rationing or stopping their medications or treatment because they can’t afford it.

A number of these things are not traditional “research advocacy” issues. But they play a vital part in our efforts to end this disease and its impact on patients.

What can we, as advocates, do?  After all, we’re also practicing physical distancing and not leaving our homes. For starters, we can:

Engage in social media, like Twitter, to learn what’s happening with other cancer patients, survivors and co-survivors. How are they coping…or not? How might these experiences and insights impact research?  What actions can we take to reduce this pandemic’s negative impact on our breast cancer community?

Call or email researchers we are working with or have worked with.  What is their situation?  How can we help?

Contact our legislators when critical legislation or policies are being considered.  Komen makes this easy to do.  If you’d like to be involved, sign up to receive emails on the latest policy issues and how you can help.

Contact people we know who live alone.  Even a five-minute check-in call can make a difference in their well-being!

Ask if canceled or postponed research-related meetings might be conducted online or as a series of webinars.  Maybe we can keep research efforts moving ahead as we move online with our advocacy.

Things we can do to keep our minds engaged in research:

Write a blog post about your experience as a research advocate.  Komen has a blog page where you can contribute your thoughts.

Watch recordings of scientific webinars and meetings you’ve been meaning to review.  Stay on top of what’s happening in the science of cancer.

– The Research Advocacy Network is known for its advocate-friendly educational resources.   

– For breaking news or discussions on recent issues, Check here.  

– SHARE also has a good video library.

– Check out Komen’s You Tube page for videos of interest to you.

Get involved in one of the Advocates in Science Committees.  The new fiscal year starts April 1.  We’ll be launching our new AIS goals and objectives. We need your brain, voice, and passionate heart!  Contact Liz Graves to let us know if you’re interested,  lgraves@komen.org

Whatever you choose to do, make sure you are practicing good self-care and compassion. This is a difficult time. Your health and well-being are priority #1!

 Author’s note:  Many thanks to Cheryl Jernigan for her thoughtful contributions to this article.

When is Enough Really Enough?

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On a recent committee call, one person jokingly asked “Does everyone have enough toilet paper?”

Instead of adding my usual sarcastic comment, I paused.

Then I said “I don’t know what ‘enough’ is any more.”

Enough:  \ i-ˈnəf

occurring in such quantity, quality, or scope as to fully meet demands, needs, or expectations.

Why don’t I know what “enough” is anymore?  What’s changed?

I used to know how much toilet paper was enough – when I had a full roll on hand to replace an empty one.  How many full rolls were enough then?  It was the number of rolls we went through in a week’s time. 

When my husband wrote the grocery list, he’d look in the cabinet, see how much we had on hand, then determined whether he needed to buy another package.  One package.  Not a cart full.

What’s changed is that we don’t know whether there will be any toilet paper on grocery shelves next time we shop.  Before, there was always a complete aisle full of toilet paper.  No shortage.  Kids used to prank their friends with a yard full of TP draped from tree to tree. Unthinkable today.

Maybe panic created the shortage.  We’ve all seen videos or photos of shoppers emptying shelves or fighting over the last pack.

It appears we, as a society, can’t trust the supply lines like we used to.  Maybe some thought that all of the toilet paper manufactures would shut down production due to the outbreak and then where would we be?  Back to using Sears catalog pages in the bathroom?  Oh, I guess not.  No more Sears catalogs.

Maybe it’s time to really think about our behaviors and if our shopping urges make sense.  Should someone have a garage full of toilet paper causing others to go without?  Should e-bay allow sellers to offer otherwise inexpensive items at huge mark-ups with high shipping costs?

Our version of a free-market economy with supply and demand features makes all of this possible.  If you want it badly enough and the supply is limited, you must pay the price.

I just hope that those e-bay sellers get stuck with a huge inventory they can’t get rid of.

As families like mine are trying to make sense of this new, temporary reality and re-define how they live, I wish there was at least a little more information about the supply chain – what’s working and what’s not.  I’m not sure I can watch another COVID-19 explanation of how the virus is spread.  I’d rather hear more about how to live our lives now.

As a person living with metastatic breast cancer for over 20 years, I’ve had to redefine how to live my life with each of the 17 treatment lines I’ve been on and with each treatment’s associated side effects. 

You’d think I’d be used to redefining how I live my life.

The problem now is it’s even more difficult to plan for events that are important to me.  I don’t know when this temporary way of living will end.  I don’t have things to look forward to.  Nearly everything I was hoping to do to through the end of summer has been canceled or delayed indefinitely.

Having something to look forward to has given me motivation to get through whatever problems cancer treatment has caused.

I’m not coping very well.  I’ve had enough.

Redefining Hope in Metastatic Breast Cancer

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I had a second post included in the Komen Konnection Blog, this one about hope.

Here is the content of that post.

Image result for hope image

“Hope” is the desire to have something happen or to make something become true.

We hope to be in a meaningful relationship, sharing our lives with someone special.

We hope our children lead happy, healthy and productive lives.

We hope to get to a service station before the gas tank is dry.

Hope for Early Stage Breast Cancer Survivors

In early stage breast cancer, hope is about getting through treatment and eliminating breast cancer in the body.  It’s about wanting to get through therapy without too many life disruptions, eventually putting cancer in the rear view mirror. It’s about wanting to live a cancer-free life.

There are many inspirational memes for early stage breast cancer patients, messages intended to lift spirits and ease anxiety of being a breast cancer patient. For example, “Once you choose hope, anything’s possible.” – Christopher Reeve

For those living with Metastatic Breast Cancer (MBC), the hope-centered memes turn into educational messages like this: “Metastatic Breast Cancer Can Be Treated But Not Cured.”  

Is this a hopeful message?

I’ve been living with MBC since 1998. I think the message is extremely hopeful. When originally diagnosed, there were only seven therapies for MBC. Now there are over 60 with more in clinical trials.

How I’ve Redefined Hope

Hope, for me, isn’t about being cured and putting cancer behind me. 

Hope is that I will live as long as I can while experiencing a reasonable quality of life. 

I also hope that when I die of MBC, it won’t be a long, painful process, one that emotionally rips my family apart. I don’t want to be grasping for treatments when it’s clearly the end, treatments that ruin the quality of whatever time I have left. I don’t want my family to feel guilty that they could have done more.

What is realistic to hope for living with MBC? Should hope even be realistic? Or is what we hope for meant to inspire us?

Dr. Leslie Blackwell explains in her TEDxCharlottsville talk about how hanging on to hope can actually shorten and reduce the quality of life for terminal cancer patients whose bodies can’t tolerate more therapy or who have no viable therapy options. Her talk is called “Living,Dying and the Problem with Hope.” She brings up excellent points about our inability as a culture to see death as the natural conclusion of living.

What Others Living with MBC Say about Hope

I asked MBC group members on FaceBook how the concept of hope has changed for them once diagnosed with stage IV breast cancer. Here is a summary of their words:

Thoughts on Longevity:

“I cling to hope even more now. I want to live as long as possible.”

“I hope to live longer even if my quality of life is low. I want be with my kids as they grow up.”

“My hope at one time was to make it to Christmas. I’m doing much better and believe I will live to see next year.”

“I include hope as an essential part of my cancer treatment.”

Thoughts about Family:

“Hope today centers around my children. I want to do all I can now to set them up for bright futures.”

“I hope my small children remember me after I die.”

“I hope my death won’t traumatize my family.”

Thoughts on Faith: 

“I’ve turned to God as I have no hope in man or science.”

“Hope is like a thread, not a rope. However, my faith, rather than hope, comes from inside and gives me strength.”

Difficulty with Hope:

“I struggle with hope and give a fake smile when people advise me to ‘have hope.’”

“I try to balance hope with the reality of my situation. I used to hope I would be cured.”

Research:

“I hope research accelerates to the point that there will be treatment options for me that provide durable responses:  years versus months or weeks.”

“To me, hope is research to benefit the next generation.”

Other Types of Hope:

“What I hope for changes by the day, week and month. These are short term hopes like getting a good scan report or that I’ll feel better tomorrow.”

“Hope for me is the ability to wake up every day.”

“I hope to enjoy every moment I’m alive.”

“I hope I have the courage to embrace death with acceptance when my times come.”

“Hope gives me the spark to set new goals, learn new things and appreciate life.”

“Hope is the lock that keeps fear in a box. It allows me to enjoy the time I have without living in a state of constant anxiety.”

Like most things in life, hope is complicated. We view hope differently once diagnosed with metastatic breast cancer. Please avoid sharing your version of hope with those living with MBC. If you do, don’t expect to get a big “thank you.”

Hope is personal.

The Right Dose

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I wrote a blog post for Komen about the need for providing the right dose to further individualize treatment in metastatic breast cancer.

Here’s the content of the blog:

Personalized medicine has been hailed as one of the latest big ideas when treating patients. According to the National Cancer Institute Glossary it’s defined as a “form of medicine that uses information about a person’s own genes or proteins to prevent, diagnose or treat disease.”

What’s missing from the personalized medicine definition and practice?

Personalized dosing.

The goal of treating early stage breast cancer is to obliterate cancer in the body and keep it from coming back. In metastatic breast cancer (MBC), the goal is to be on a therapy as long as possible to control the disease while maintaining quality of life. With two distinct goals, you’d think there would be two dosing strategies. One is a sprint, and one is a marathon.

Most FDA approvals for cancer drugs include a maximum tolerated dose (MTD) with at least two lower doses that can be used. All three are shown to be effective, otherwise they wouldn’t have been approved.

The National Comprehensive Cancer Network (NCCN) guidelines list the MTD for most of the approved breast cancer therapies for both early stage and metastatic breast cancer. These guidelines are used by many oncologists to determine dosage.

So instead of personalizing the dose to patients based on drug sensitivities in the past, whether the therapy is for disease control or disease elimination, a standard MTD is administered.

In July 2019, I attended an update on breast cancer therapies for oncologists where I was the only advocate present. During an optional lunch session sponsored by a drug company touting their new drug that I’ll call Drug X,  I publicly suggested that we aren’t properly dosing new cancer meds when there is no difference in outcomes between maximum tolerated doses and stepdown recommended dose reductions in MBC. Pharma reps swooped in on me after the session.

The reps explained that all patients need to start at MTD because if we don’t start there, we will never know if the patient can tolerate the maximum dose. 

Alarms went off in my head. It made no sense to me.

So, let’s say you are a patient with MBC and you’ve been on a few lines of therapy. You have progression and Drug X is your next option. Even if you have low blood counts, have experienced eventual stepdown doses on your other therapies due to sensitivities or side effects, you are to start at the MTD. Why? Because that’s what the guidelines say.

Does this sound right to you? 

It doesn’t make sense to me. Why subject a patient to the highest dose when it’s extremely unlikely they will be able to tolerate it and will likely experience serious or reduced quality of life side effects? And, these side effects may reduce the amount of time the MBC patient can safely remain on the drug.

Furthermore, clinical trials are often quick to establish dose standards without taking time to consider a variety of dosing schedules and amounts. Sometimes it takes a few years for oncologists to see their patients experience intolerable side effects at the MTD before they change their personal practice using reduced dosing. That happened with capecitabine. 

It seems to me that NCCN guidelines should suggest starting at the lowest dose and ramping up if needed or starting at the middle dose and going up or down based on patient reaction. Some oncologists are already doing this, but outside of guidelines. After all, they are “guidelines” not commandments. Yet oncologists may feel uneasy prescribing outside of these guidelines.  

If you are starting a new line of therapy or are on a therapy but experience intolerable side effects, talk to your oncologist about reduced dosing. Your oncologist should be able to explain a good rationale whether to stay at current dose or step down to a lower dose. Make sure you understand the pros and cons. Then it’s your decision how you’d like to proceed. 

Adding individualized dosing to the definition of personalized medicine should be the standard of care.

*The opinions expressed are those of the author.

For more information see:

“A new concept may help us at last abandon one-size-fits-all dosing of cancer treatment drugs”

“Challenging Standard-of-Care Paradigms in the Precision Oncology Era”

“Precision Medicine Is Not Just Genomics:  The Right Dose for Every Patient”

“I have a pill for that”

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When doctors delay or misdiagnose patients

In June 1998, three years after my stage 2a breast cancer diagnosis and treatment, I was sitting in my wheeled office chair.  I pushed off with my left foot to access a file cabinet.  “OUCH!  That hurt!”  My hip screamed.  I got up and walked around, trying to shake it off.

But I couldn’t shake it off.  The pain worsened.  Over a few weeks, it got to the point where I could barely walk.

In the meantime, I had a follow up oncology appointment with a “fill in” oncologist as my other oncologist moved away and her replacement was yet to arrive. 

Dr. R looked at my lab results, saying nothing about his impressions of those results, and gave me the side-eye.  I told him about the pain in my hip and at the time I thought it might be getting better.  Side-eye #2.  No communication.

I thought “This doctor has the bedside manner of a walnut.”

I was offered prescription strength acetaminophen and told to see him again in 6-8 weeks.  No explanation as to why this early return appointment.

Nothing.

I hobbled back to my next appointment with Dr. R.  He said he wanted me to do x-rays, bone and CT scans.  He didn’t really explain why.

It took a few months to get all the scans taken, compared and analyzed.  This was 1998.  The Dark Ages of diagnostics – there were not many pieces of imaging equipment, imaging sessions took longer and that caused major scheduling delays. 

A few weeks after the results were in, I met with Dr. R again.  He finally told me that scans found “suspicious lesions in my left ischium” and that I needed a bone biopsy to confirm.  But they didn’t know how to approach the biopsy so he would need to consult with various people.

He never said “cancer.”  But I knew that is exactly what it was.

It took 6 weeks to receive a call to schedule the outpatient bone biopsy.  I tearfully called the scheduling department every few days asking for an update.

My hip injury happened late June and it was now Thanksgiving.  I’d invited my entire extended family over for a Thanksgiving Feast.

It took over five months to finally receive my diagnosis of metastatic breast cancer to the bone.  Therapy started the week of Christmas.

When I think back on this, I wonder if Dr. R was concerned that he might frighten me if he shared his suspicions.  What he didn’t know was that I was already frightened, frightened to the point of not saying or asking anything.  That is totally unlike me.  But he didn’t know that.

I’ve shared my stories with others living with Metastatic Breast Cancer.  They are not shocked.  They nod their heads and say “OK.  This is what happened to me before I was finally diagnosed.”

Then my jaw drops.  Every time.

When presenting with symptoms of breast cancer or metastatic breast cancer–even for those who had early stage disease–these are things patients have told me:

Doctor comments heard before being diagnosed with early stage breast cancer:

  • “You’re too young to have breast cancer.”
  • “That’s just an infection.  Happens all the time during lactation.”
  • “You have no family history of breast cancer and don’t have any risk factors.  You’re fine.”
  • “Breast cancer doesn’t hurt.”
  • “You have no lump on the mammogram.  Therefore, you have no breast cancer.”
  • “You just have lumpy breasts.”

Doctor comments heard before being diagnosed with metastatic breast cancer:

  • “Everyone starts feeling like that at age (fill in the blank).  We’re all getting older.”
  • “You probably have colon issues.  Try this laxative.”
  • “Your back hurts because you garden so much.”
  • “Maybe your abdominal pain is due to your diet.”
  • “It’s not that unusual to feel dizzy from time to time.”

The bottom line?  Patients hearing comments like this are often told to wait six months because the symptoms will probably go away.  “This pill can help you manage those symptoms.”

But the symptoms don’t always go away.  Now the patient starts questioning their doctor and trust in their doctor wanes.  Many patients start “doctor shopping.”  They want to find someone who can help them, not dismiss them.

My friend Lynda sums it up like this:  “We are missed, then dismissed.  But we must persist.”

Missed or delayed diagnosis isn’t common to breast cancer alone.  Some illness are difficult to diagnose.  Doctor’s aren’t perfect.  They practice medicine.  That doesn’t mean they’re always good at it.  My husband reminds me that “50% of all doctors practicing today were in the bottom half of their graduating classes.”

But doctors can learn and the best ones learn something new every day. Often, they learn from their patients.

Doctors can’t learn if they never see the patient again after misdiagnosing them.  Or if they never look to see what eventually happened to that patient.  They don’t have time for that.

So how can patients help?  Send an email to the original doctor telling them what happened?  Keep seeing the same doctor over and over until they are properly diagnosed or referred to the right specialist?  Patients don’t have time for that.

I wish doctors would diagnose themselves. 

Are they a problem solver or do they go by a cookbook? 

If they haven’t seen a certain condition before, why might they assume that condition doesn’t exist and couldn’t exist in this particular patient? 

“Never seen it before so it doesn’t exist.”

We don’t know if delayed diagnosis has any impact on MBC overall survival.  But we do know that it has a tremendous impact on mental well-being, the ability to focus at work, our relationships with our friends, families and co-workers among other things.  Once we know what’s happening, we can start finding solutions and acting. 

I’m hoping new technologies like liquid biopsy may lead us to better and faster diagnostics.

But in the meantime “Here, take this pill.” 

You Publish – We Perish

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Stop the Madness

Sometimes I wonder whether the purpose of some cancer research is to beef up biosketches of investigators while contributing to the growth of the medical publishing industry.

Other times I am sure of it.

As a seasoned advocate reviewer for three different breast cancer funding organizations, I’m asked to review the overall impact I believe an application may have on achieving the goal of the particular funding program.  I assess this representing the breast cancer community in total, not my particular medical situation. 

As I read each proposal, I seek answers to questions like these: “So what if this is study funded?  What eventual difference might the research findings make in the lives of patients?”  Sometimes the answers are difficult to find in basic science proposals, but it’s not impossible. 

Each applicant writes what they believe the impact of their study will be if funded and if their hypothesis is correct.  The idea is to make a difference by moving the science ahead in order to one day reduce incidence, improve quality or quantity of live, and/or prevent deaths.  Each program announcement is very clear about the objectives of this section of the application. 

One investigator, who I will call Dr. Nyt (Naïve Yet Truthful), enthusiastically stated in his Impact Statement that if funded, his research would generate two, maybe three manuscripts which would impact his career prospects, and would also put him in a position to get additional funding so he could publish additional studies.

That was the essence of his idea about the overall impact of his work.  That he would publish more articles and further his career.

There is a lot of truth to Dr. Nyt’s comments. 

It’s what many may think, but never write.

If you don’t publish, you don’t keep your job, no less move up.  You don’t Pass Go.  Ever.

Another part of peer review for some funding programs for less experienced scientists, is to review the potential of each applicant to become an independent breast cancer researcher.  During peer review discussion, much energy is put toward questions like these:

For someone at that level, does the fact that they only have four published articles give them a lower rating? 

What if the applicant was first author on all four publications? 

What if the applicant has never been first author, but has been co-author of ten published articles? 

What if the ten articles were published in “low quality” journals?

What if the applicant has only published two articles and is working to get approval on five more? Does that mean they aren’t very productive? 

Little is said about the quality of the contributions the articles may have to scientific progress and how these published articles may eventually influence clinical practice.

The reward system favoring publishing over impact is fraught with long term issues, issues that may have decelerated progress. Focusing on publishable studies may have delayed the groundwork needed to develop new therapies that could extend lives, improve the quality of lives or reduce deaths from breast cancer. The extreme emphasis on publishing may also have discouraged many promising investigators from pursuing a career in the field.

Scientists know this.  In academic settings they play the game because they have to.  It’s the old “publish or perish” — you’re only as good as your last published article, only if it’s accepted by a high-quality journal.  And publishing in any journal is better than not publishing at all.

Over the past six weeks, eight fabulous breast cancer advocates – my friends – have died of metastatic breast cancer.

How many new journals have gone to print over those six weeks?

How many articles have been published? 

How many of those are the career-sustaining articles that will likely go nowhere, except for citations in the next round of articles? 

How many of them end with “in order to know for sure, we need more studies?” 

I fully realize I’m an outsider making observations based on what I see and what I learn about.  In school, I didn’t excel in biology and couldn’t stand following the scientific method.  I’m no expert.

Alone, I have very little power to change anything.  That frustrates me.  People are dying.

Many advocates believe that if we just spent a lot more money on research, we would be closer to ending the death spiral in metastatic breast cancer.  Maybe we could. I’m certainly not against more funding.

But I’m not convinced that by only increasing funding for breast cancer research, we will achieve better outcomes for patients.

There’s more to it than that.

Until we fully examine and change the reward systems for scientists, it will be more difficult to achieve the progress we all want in order to stop our friends and family from dying. 

Let’s stop the madness.

Am I Really a Cancer Survivor?

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Call it Like it is: Maintaining the Will to Live

Musings from 21 Years of  Living with Metastatic Breast Cancer

After this blog post, I’m done answering this question: 

Are you a breast cancer survivor?  

Done.  Over.  Fini-to.

People living with metastatic cancer of any type can refer to themselves as anything they want.  Warrior?  Great.  Survivor?  Fabulous.  Thriver?  Whatever floats your boat. 

Yes, sarcasm flows in my veins but, really, I’m good with all of those descriptive terms.  Go for it — for your own purposes but not mine.

These labels help inspire people who face life-threatening diseases feel empowered, strong, hopeful.  Terrific.  I’m happy they use these terms to overcome the dark thoughts in their minds that their illnesses will likely eventually kill them. 

But not today.  Today we live.  Be positive. Be strong. “So stop being so morbid, Sandi, and just live.  Be happy.  Be grateful.”

Using labels like Survivor can matter when you discover your treatment has stopped working or the side effects of therapy are nearly impossible to endure.  “I need to get over this and go on.”

Maintaining the will to live – that’s what it’s really all about – is important for ourselves and for the sanity of our family and friends.  They don’t want us to give up and we don’t want to give up because of them.  Never.  Until we have to…and even then…we don’t want to stop trying to outlast cancer. 

I lost my will to live one day.

In early 2017, after two years of brutal chemo bouts with Ixempra followed by Halaven, I found myself spending more and more time in my recliner.  If I had to go to the bathroom, I’d wait until the last possible moment to muster up enough energy to walk 14 steps.

In between my frequent naps, I looked out the window.  I saw neighbors riding in cars, walking their dogs and gardening.   “I don’t have the energy to do ANY of that and my energy level is draining by the day.  I don’t see an end to this.”

Then we received a much-anticipated call from my son.  “The baby is here!  He was born a little while ago.”  My grandson.

And I wasn’t there.  I couldn’t be there.  Impossible.

My reaction?  I sobbed.  Ugly crying.  Unstoppable tears.

Why?

This couple went through fertility testing only to find they would not likely conceive without IVF.  During IVF, there were many ups and downs for my daughter-in-law.  So many uncertainties.  It was uncertain whether IVF would work, if the baby would survive through pregnancy, if the baby would be born with physical problems and even if the child would survive the birthing process. 

Lots of tension.  Lots of stress.

I was so relieved that my daughter in law was fine and the baby was fine.  What a blessing!

Then my thoughts went here:  “This baby will never get to know me.”

My daughter and husband were stunned by my tears, unaware of the thoughts in my head.  My daughter looked at me and said “Mom, you’re scaring me.”

I thought about what she said and what it meant.  She was afraid I was giving up.  That I would soon die because I might say “No more.”

I scared myself.  What happened to that urging inside of me that made it possible to wake up every day?  What happened to my determination to slog through my 14th line of treatment until it stopped working?

Where did my will to live go?

Packed up and gone.  I couldn’t locate it anywhere.  AWOL.

I thought how calm, peaceful and wonderful it would be to fall asleep and not wake up again.

Then I thought, “Am I really finished here?  Is this my last curtain call?”

It was at that point I called my insurance plan’s mental health helpline.

It took a few weeks to start sensing my urge to live again.  But it happened.  With therapy and medication.  Now I feel more like me.

But I don’t feel like a survivor.

My daughter in law is a survivor of IVF.  My grandson survived gestation and birth.  Both are survivors of their situations.

To me, a survivor is someone who has been able to successfully walk away from a life-threatening event and goes on with life.  Like the survivors of the Titanic.  They got in lifeboats and were eventually rescued.  Most went home.  Many returned to their old lives.  They didn’t get back on that ship except in their nightmares. 

I’m still on the Titanic.  I haven’t survived the event called “breast cancer.”  I may be currently living with breast cancer but I’m not someone who has survived.  I know my time is limited, even though I’ve beaten the odds of living past the magic five-year mark.

So, call me what you will if it makes you feel better to say it.

Tell me I’m alive because I have a positive attitude.

Tell me I’m alive because God isn’t through with me yet.

Tell me I must be doing something different to have lived this long with stage IV cancer.

But I know I’m alive because I still have the will to live.

Oh, and having a type of cancer that responds to current therapies helps a lot.  A whole lot.

Don’t Ask, Don’t Tell

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Let’s Take Metastatic Breast Cancer Out of the Closet

Early Detection Saves Lives.

Get Your Mammogram Now.

Look Out for Lumps and Bumps.

These are the breast cancer awareness messages that have bombarded us with pretty pink images of women with smiling faces. “I had my mammogram. I’m good for a year now.”

Sometimes our best attempts at building awareness result in unintended consequences.  Serious consequences.

Those sending out the awareness messages are well meaning. They love it when someone tells them:  “I saw your piece about breast cancer and I got a mammogram right away. They found my tumor early. Now I’m cured.  Thank you.”  I wish we could, in all honesty, say that the patient has indeed been cured.  But we aren’t there yet.

Nice message, but incomplete.

Why is it that we want to catch breast cancers early? Some say it’s because if we catch it when it’s small, it won’t come back.

I have three things to say about that:

  1. Come back where? The focus is on recurrence in the breast, either the same breast or the other breast. But breast cancer that stays in the breast doesn’t kill you. If it just hangs out in your breast, even if it’s growing, it’s more like an annoying mole versus a melanoma. Yes, it’s frightening if it returns to the breast but it’s exceedingly unlikely that it will kill you if it stays there.
  2. Small tumor size doesn’t mean it’s not aggressive. There is evidence that even stage 0 breast cancer, also called DCIS or LCIS, may shed cancer cells that circulate in the blood or lymph system until they find a place to hide out- like in your bone marrow. They can sleep there for weeks, months, years, decades. Then one day, they might wake up and…
  3. Screening Isn’t Always the Answer.  There’s a lot of press about dense breasts, younger people not having effective screening options, and unreported or uncommunicated potential tumors seen on images. We need a better, more accurate screening process. Why has this taken so long to achieve?

What is the public being told about signs and symptoms of breast cancer?

The focus is on the breast itself and related lymph nodes. Do you see lumps or bumps? Any nipple discharge? Swollen areas in the armpits?  Unusual color, heat or emerging dimples on the surface of the breast?

There are a slew of disturbing messages out there too: “Save the ta-ta’s.” Or a man at a breast cancer fundraiser wearing a t-shirt that says, “I Do Free Breast Examinations.” Or special days promoted on social media posts that may be intended to raise awareness by going braless. Funny stuff, right? But you know it’s crap. Just plain crap that doesn’t help anyone.

To most of us living with metastatic breast cancer, these “humorous” messages are extremely offensive.  We are struggling to survive.  And that’s not very funny,

What information does the public (or at least early stage breast cancer patients) get about metastatic breast cancer (MBC)?

Nothing. Or practically nothing.

We receive a lot of information about recovery from breast surgery and treatment side effects. But nothing or nothing memorable about metastatic breast cancer. “Don’t worry about recurrence,” some doctors tell us. “We got all the tumor and we will cure you.”

A good portion of the general public as well as many early stage breast cancer patients have no idea that breast cancer can set up shop in other parts of the body. They don’t know that this kind of invasion is what kills you.  When they hear that a breast cancer patient has cancer in the liver, they think the person has liver cancer, not breast cancer that has spread.  These are not the same conditions and are treated differently.

Cancer confined to the breast does not kill, but it greatly upset us and our loved ones.*

*  There are examples of rare cases where people have died from breast cancer that hasn’t metastasized.  For example, if your breast cancer becomes infected, you could die from the infection.  Or you could die from the side effects of treatment that is overly toxic for your body.  These types of situations account for only a handful of the over 40,000 annual deaths due to breast cancer in the US.  It’s still too many.

Consider what three women now living with metastatic breast cancer have to say:

I was diagnosed metastatic three months after my original diagnosis of bilateral breast cancer (cancer in both breasts). I’d never heard the word ‘metastatic’ before. I was always confused as to the how’s and why’s of some people surviving it and others dying of it. (Tania Saunders-Lelisi)

I was told I was “cured” by several doctors after my early stage cancer. I was also told that there was a remote chance of a local recurrence, so I opted for a double mastectomy. MBC was not mentioned. (RA)

When I had early stage breast cancer, metastasis was never explained to me. I didn’t know it could come back after a double mastectomy, complete hysterectomy and chemo. In 2009, I was told I was cancer -free. I would have wanted to know more so that maybe I could have spoken up during the 4 months it took to finally get my MBC diagnosis in 2016. (Linda Mantke-Dolezan)

So What?

The truth is, not everyone who gets breast cancer will develop metastasis. However, as it stands now, upwards of 20% of stage 0-3 breast cancer patients will be diagnosed with MBC in the future – weeks, months, years or decades later. Then there is the roughly 10% of patients who are diagnosed with MBC right from the start — without having an early stage cancer in the breast detected first.

Scientists have some idea of which breast cancers are more likely to metastasize, but it isn’t 100% or even close.

What to Do as Patients

We need to learn the signs of MBC and insist on being taken seriously if we experience these symptoms. Consider this comment from someone living with MBC:

I wish I would have known the signs of MBC. Then I would have known what my bone pain was. Breast cancer to my bone was misdiagnosed for too long. It was already in my liver by the time I was diagnosed with stage IV breast cancer.

Ignorance is not bliss.

Knowledge is power.

In order to face our fears of dying from this disease, we need to have some control, like knowing what we should look for. Hip or stomach pain could be something that goes away in a few days. The same with shortness of breath. But if symptoms like these last for awhile, like two or more weeks, you need to see a doctor. We must insist.

How Medical Professionals Can Help

Don’t patronize us. We know you want to believe you can cure us and send us on our merry way so we can live our lives as best we can.

You need to educate us, even though the risk of MBC may be low.

Some early stage breast cancer patients have a greater risk of dying from breast cancer than some long-term smokers have of dying of lung cancer.  But we inform smokers of the signs and symptoms of lung cancer.  Not so for early stage breast cancer patients.  Think about that.

When we “graduate” from early stage treatment, give us information – written information – with pictures and facts – about signs and symptoms of MBC.

Don’t dismiss us when we report suspicious symptoms.

Yes, we know we are all getting older, and some of the symptoms may be confused with aging. But please humor us. Ask detailed questions. Order scans when you can’t be certain.  Do the job you were trained to do.

Just because you haven’t seen a specific symptom that turns out to be stage IV cancer, doesn’t mean it can’t happen.

What You Can Do Now

Insist that any messaging about screening and early detection includes at least a reference to the signs and symptoms of MBC.

Write to the companies behind those messages. Thank them for their work, but let them know their messages are incomplete.

We need to provide complete and compelling messages.

We can’t continue to tolerate sugar-coated images or slogans. We need meat and potatoes.  (Sorry for using that analogy, vegans.)  Let’s try this again:  We need broccoli and lentils.

Educate others you know about the signs and symptoms of MBC, particularly those who have been diagnosed with stage 0-3 breast cancer. 

Sometimes even those living with MBC aren’t aware of the signs and symptoms of cancer that advances to additional sites. 

Here are some great references to help educate ourselves and others:

Cancer.net

National Breast Cancer Foundation

Susan G. Komen

American Cancer Society

These aren’t perfect but they represent the best we have right now.

There are other sites as well, but some are not easily found on internet searches. Most of the references resulting in a search of “symptoms of metastatic breast cancer” take you directly to a specific drug company and their well-publicized treatment for some type of MBC (yes, there are subtypes of MBC). 

Try it.  Search for “symptoms of metastatic breast cancer.”  Click on the first few items that are listed.

If you know of other sites that contain useful information on this topic, please post them in the comments section below.

In The Future

I hope that someday, this post will be sorely outdated. Readers will think “What the heck is this lady talking about?” That day can’t come soon enough.

At First

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Photo by Dom J on Pexels.com

SHARE published a poem I wrote during the San Antonio Breast Cancer Symposium (SABCS) this month.  I attended an evening workshop along with a handful of other Patient Advocates attending SABCS where we learned about how to write interesting pieces for publication. Eli Lilly and Company sponsored this event.

After a seven-minute writing exercise, we were asked to read what we wrote about living with metastatic breast cancer (MBC).  This is what I wrote:

At First

Cry. Stomp your feet. Curse God. Feel sorry for yourself.

Mourn the future life you won’t have.

Go to sleep. Wake up. Greet the day.

Think about what will make you happy for the next 5 minutes. Do that.

Think about who you love and why you love them.

Prepare yourself to give the news, but only to those who won’t stomp on your soul.

Think about how you want to live your new life story. What do you want? What don’t you want? How much do you want to know what’s lays behind the medical curtain?

Plan your questions for your doctor. Don’t sit there and be dumb. Ask. Ask. Ask, until you understand, even if your doctor rolls her eyes.

Come up with a plan. Sleep on it.

The next day, pretend you made a different decision. Live with that.

Then on the third day, decide what you want to do and go for it.

And remember, by all means, do no max out your credit cards. You may live long enough to have to pay it all back.

These thoughts are based on general advice I’ve given over the phone to many frightened women who were recently diagnosed with MBC.  These callers connected with me through the helplines of After Breast Cancer Diagnosis, Living Beyond Breast Cancer, or SHARE.

20+ Years of MBC Treatment

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“You’ve been on cancer treatment for over 20 YEARS?”

I nod my head.

It amazes some people that I’ve been living from treatment to treatment since being diagnosed with metastatic breast cancer (MBC) in 1998.

That’s how those of us with MBC live our lives.

Some have asked about my treatment history.  After being asked so many times, I put my chart on a timeline that spanned 9 feet.  Here is the tabular view.  Click on the hotlinks to if you’d like more information.

Item Treatment Start Date End Date Notes
1.0 Lumpectomy 7/7/95 Stage 2a, 1+node, ER-, PR-, HER2-  Age 42
2.0 Cytoxin, Methotrexate, 5FU 8/1/95 2/1/96 6 Rounds Chemo, Radiation after 3rd Cycle
3.0 Radiation to Breast 12/1/95 12/31/95 30 Rounds, Right Breast
4.0 Biopsy – Breast 1/3/97 Rt Breast Biopsy-benign (dead tissue)
5.0 CT Scan 10/16/98 Suspected mets, left scapula, left sacroilliac, left ischium, pubic bone
6.0 L Ishium bone biopsy 11/23/98 Bone Mets Confirmed: ER+, PR-, ER2-
7.0 Adriamycin Cytoxin 12/8/98 3/4/99 #1 Bald, 3 rounds, didn’t work
8.0 Portacath Installed 12/9/98 6/28/05 Right Side
9.0 Aredia 2/12/99 7/19/99 6 cycles, Stopped before having bone marrow transplant
10.0 Taxol Carboplatin 4/9/99 7/22/99 5 cycles; worked
11.0 Autologous Bone Marrow Transplant 3/25/99 11/1/99 STAMP V HDC/SCR Trial
11.1 Stem cell collection 8/16/99 8/23/99 3 Hours Daily, City of Hope
11.2 Daily Chemo 24 hour 9/10/99 9/14/99 Cytoxin, Carbo, Thiotepa, Mesna
11.3 Stem cell infusion (PSCR) 9/17/99 Followed by 2 weeks in hospital, blood transfusions
12.0 Tamoxifen 1/1/00 1/1/01 Daily oral pills
13.0 Emergency Appendectomy 3/13/00 Likely side effect from Chemo
14.0 Aredia 9/5/00 7/1/06 Developed Osteonecrosis of the Jaw
15.0 Biopsy-Breast 10/3/00 Benign – palpable lump
16.0 Arimidex 1/1/01 1/1/06 Mets advanced to spine, right knee after Tamoxifen
17.0 Femara 1/1/06 6/5/09 Mets advanced in spine, ribs, sacrum, left acetabullum
18.0 Left  Breast Reduction 3/27/06 Equalize left side with right
19.0 BRCA 1/2 test 1/18/07 Negative BRCA mutations
20.0 Faslodex 6/5/09 More mets-pelvic area; Faslodex resulted in Full Body Hives, discontinued
21.0 Aromasin 8/25/09 12/20/09 More spine mets
22.0 Xeloda 1/1/10 5/10/11 #2 Bald
23.0 Pancreatitis 1/26/10 1/31/10 6 days in hospital, from Xeloda
23.0 Xeloda Reduction 2/12/10 Reduced 25%
24.0 Xeloda Reduction 4/23/10 Reduced another 25% due to low blood counds
25.0 Mastectomy 3/30/11 New Primary Breast Tumor; ER+, PR-, HER2+
26.0 Portacath 5/16/11 2/19/13 Left Side
27.0 Taxol  5/17/11 10/19/11 More mets-skull, spine, pubic bone
28.0 Herceptin 5/17/11 12/12/17
29.0 Arimidex 10/20/11 7/17/13 More mets-sternum, spine (2nd time on drug)
30.0 Bowel Obstruction 6/26/12 Diagnosed with Crohn’s side effect from chemo
31.0 Right Breast Reconstruction Latissimus dorsi flap
31.1 Mycobacterial infection  5/24/13 Expander infected; removed expander
32.0 Taxol Gemzar 12/10/13 7/1/14 #3 Bald; 6 cycles of TG; mets tumors grow
33.0 Aromasin 1/14/14 7/14/14 Taken after cancer stabilized with TG, second try with this drug
34.0 Kadcyla 7/8/14 11/21/14 #4 Bald, 3 cycles; issue with low blood counts
35.0 Ixempra 10/14/16 9/5/17 #5 Bald, was just on Herceptin between Kadcyla and Ixempra
36.0 Perjeta 5/1/15 12/12/17 Added to Herceptin
37.0 Apply for Clinical Trial 9/5/17 1/3/17 IGNYTA, STARTRK-didn’t have mutation in ALK, ROS1, NTRK!-3
38.0 Halaven 10/9/17 11/20/17 Mets grew in sternum
39.0 Neratinib 1/28/18 Ongoing 6 Daily oral pills, extreme diarrhea
39.1 Faslodex 1/28/18 Ongoing Benedryl pre-med to prevent hives