Tag Archives: mbc

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”

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.