Martha lives in Illinois and was diagnosed with metastatic breast cancer in January 2015. She has a husband and three children, ranging in age from 12 to 18, a dog and a lizard.

Martha Carlson

Inspiration isn’t hard to find among patients in the cancer world. We run marathons, climb mountains, answer cancer helplines, raise money and often do all this and more while undergoing treatment. Some of us are driven to make change happen in ways that can affect people far beyond ourselves and those nearby. There is an abundance of people, mostly women, with metastatic breast cancer who have single-mindedly put their determination to make change happen into real and effective actions.

When I say I’m inspired by them, I mean inspired in the most literal way—their words and actions cause me to also take action. It’s doing these things that has allowed me to make more sense of being diagnosed with metastatic breast cancer and living with it, so far, for over six years.

I first met Katherine O’Brien, former editor and volunteer with numerous cancer nonprofit organizations such as the 

, a long-time outspoken advocate for change in how the National Cancer Institute (NCI) counts people with metastatic cancer, when she tracked me down because of my writing on this very site. She was hard at work trying to get everyone with metastatic breast cancer counted by the NCI SEER database, a database that collects information on primary cancers and survival but doesn’t track instances of cancer recurrence/progression.

In breast cancer, extrapolation from the SEER data has shown that 20% to 30% of people with early-stage breast cancer will eventually progress to metastatic breast cancer. Counting all these people accurately is important for understanding what is happening in breast cancer, for research, and in the lives of real people. Missing and misidentifying cancer that has moved from “survived” to metastatic is not reasonable in this day of electronic data and healthcare surveillance.

When we met, Katherine talked to me about what was happening with SEER, but it wasn’t until I followed her advice to attend the 

 annual conference for people with metastatic breast cancer that I truly understood.

As we sat in a large hotel conference room, hundreds of us, Katherine stood on the stage and presented her case and it was enough to get everyone in the room to raise their own “Count Me” sign. Two years earlier, in 2015, she had started an online petition urging the NCI to count breast cancer recurrences. Her early and continued push to get this progress at SEER and other cancer registries was taken up by numerous metastatic breast cancer organizations that furthered the cause through years of talking to legislators and keeping the SEER problem front-and-center.

 about why counting cancer recurrence accurately matters. But, like anything that involves the government, data, and health, it won’t happen immediately. This latest effort has been a long time coming. In December 2020, scientists associated with The Breast Cancer Recurrence Project, a pilot program, outlined the initial steps in a presentation (Poster Session 7, poster 07-37) at the San Antonio Breast Cancer Symposium.

In that presentation, the authors write about their long-term goals, “We envision [this] will expand researchers’ ability to formulate risk calculators for cancer patients’ individual risks and contribute to evidence-based recommendations for recurrence prevention strategies.”

For those with metastatic breast cancer initially diagnosed between stage 0 and stage 3, it is a chance to know that you will not be counted among the cured but among those whose cancer care deserves so much more attention.

Articles

The Breast Cancer Recurrence Project aims to revolutionize and bring accuracy to what we know about who’s living with metastatic breast cancer.

Count Me Among The Breast Cancer Recurrence Project

By my calculations, I’ve gone for treatment a total of 112 times in the past six years. I’ve had approximately 23 scans, give or take a few due to brain scans, I’ve had my heart checked at least 20 times, and blood draws somewhere around 30 times. Add to that oncologist appointments, primary care appointments, mental health appointments, a brief (but impactful) stint in physical therapy, as well as appointments I’ve forgotten, and it becomes very clear to me why I struggle with the idea of celebrating a “cancerversary” that falls during the period of making New Year’s resolutions.

Like birthdays, I’m counting up but there is a lot of the bittersweet when it comes to cancer milestones. I am thrilled to have lived a remarkable 

 with metastatic breast cancer, but there’s not a lot I’ve forgotten about the first year following my diagnosis. It was a steep learning curve featuring fear, loss and gradual understanding along the way.

And yet, with six years in the rearview mirror, the road in front is still mostly the same for all of us. The number of people dying each year from metastatic breast cancer in the United States remains tragically high at over 40,000. The length of those lives at diagnosis remains mostly short. Just 27% of women with metastatic breast cancer and 22% of men are alive at five years from the date of their diagnosis. There’s been progress—too often in the form of drugs that are so rough on our bodies that some choose to forgo them for the short life extension they promise—but there’s been so much pain as well. It’s hard to celebrate being here when friends have died far too soon or are facing the end of their treatment options.

Yet, the hope of the cancerversary is real this year.

I look back at my six years of metastatic breast cancer and there’ve been two high school graduations with a third on the horizon, a college graduation, good times with good friends and trips to see the people I love. I’ve packed a lot into six years and felt it all, good and bad. Year seven, starting at the same time as enormous changes in our country including a 

 for COVID-19, renewed hope, seems like the right time to take note of a full six years of life when what I expected at the start was so much less.

So, while I’m not fully celebrating, I am aware of all that I would have missed. I am spending this month in thanks for the people who’ve kept me here, from my friends to my oncologist to the researchers who’ve put their careers directly in my unplanned path. I am acknowledging the fear I felt that lingers and the love that encircles me even when we can’t give one another hugs. Life is short and it is often far shorter with cancer.

Year six may be too much like year seven, where months of doing so very little other than what was devoted to cancer sometimes made it feel endlessly empty, but somehow the future seems to be stretching out in front of me in this moment. Acknowledging a cancerversary in the midst of this particular new year seem like the proper expression of hope. Here’s to my year seven and to 2021—may it be good to us all.

Living beyond the statistics and finding a way to celebrate a “cancerversary” with metastatic breast cancer.

Looking At Year 7 On This 'Cancerversary'

My parents, who were raised in Minnesota, trained me well: The doctor is always right and don’t talk about health or politics.

I’ve been able to get past the first and third parental edicts, but despite writing about my personal health and cancer experiences, I continue to minimize health issues when talking to friends, family, and unfortunately, with my healthcare team.

I’ve come across a lot of people like me, mostly women but men too, who want to talk about anything except health and illness, anything at all. My doctor’s appointments can easily be filled with a single word: “Fine” or, when I actually am fine with something, “Good”. This has been a difficult habit to break.

It has helped me to think about how talking to my doctor is not the same as chatting with a friend across a table (or these days, across a fire pit). If I cannot bring myself to be forthright and open then they can’t do their best for me. Talking about side effects can be a particular challenge during cancer. When treatment is just starting or isn’t going well, there are so many things to talk about, and when it is going well, who wants to seem ungrateful by talking about side effects?

I steel myself ahead of appointments, to be honest and open. Talking about side effects with your healthcare team isn’t complaining. It’s how doctors know what you’re experiencing. A lot of times, side effects are difficult to bring up because they hit the target on so many things that no one wants to admit to or discuss in detail. Here are some of the ways I try to start the important conversations around side effects.

I’ve learned the hard way that just starting with, “I’m embarrassed about this but…” and launching straight into the embarrassing topic is always my best bet for actually spitting it out. Once it’s out there, the doctor invariably addresses it as something totally normal.

I have chemotherapy-induced peripheral neuropathy. I reported it during my initial treatment with Taxol. Did I minimize it? I didn’t think so, but the reality is I probably did. No one new to cancer and a serious health issue wants to jeopardize their treatment because of a little tingling in the fingers.

Of course, that “little tingling” has only worsened and spread over the subsequent years. Now, when fear is what is stopping me from being honest, I admit to being afraid and why before explaining what is going on to my doctor. This allows her to see the situation from my perspective.

I feel embarrassed to bring up diarrhea, but I feel shame when I can’t afford something. Fortunately for me, my health insurance covers nearly everything in my care but most of us are familiar with the experience of putting something back on the shelf because it is out of our price range. For many, financial toxicity is the most important side effect from cancer treatment.

Be direct by mentioning medical expenses and asking to speak with the financial or social services department. Financial toxicity doesn’t go away like diarrhea usually does. Turn this into an ongoing conversation so that whenever a new drug, intervention, or scan is recommended, you can feel confident in your ability to afford it.

I first heard of this “syndrome” from advocate Judy Erdahl, herself a nice Minnesotan. The good patient doesn’t want their doctor to feel bad, wants to be easy to care for, doesn’t want to complain, and so on. They also can be late to getting the care they need. I once lived with pain so severe in a knee that my oncologist asked me about it upon hearing me talk about not exercising.

A so-called “good patient” would sacrifice her comfort, as I did, to avoid feeling like a complainer. This is not being a good patient though. This is putting my own discomfort about discussing illness above my need to receive the best possible care.

I’ve learned a lot in the years since my diagnosis. I know that good care requires honesty with all of my doctors. If you are having a hard time talking about treatment side effects, try to remember that your doctor needs to hear everything that is going on. She can reassure you, make adjustments, find specialists, or help you find resources.

Sometimes it’s hard to bring up the many side effects of cancer treatment, but talking about them can help your doctor provide the best care.

Talking About The Side Effects From Cancer

Do you ask yourself why you got cancer? Was it something you did, something you ate, the place you live or the jobs you’ve held? So many ways to blame yourself, and too often receive blame in the form of questioning from others, that some of it sticks.

Into this stew of self-blame comes more research showing that what we eat may matter in terms of a first diagnosis of breast cancer. “Modifiable risk factors”, things like diet, weight and exercise, don’t reach the level of importance in breast cancer risk of being a woman or other nonmodifiable risk factors, but they do offer opportunities to play an active role in your own health. When studies 

 come out, I try to balance my appreciation for how our bodies work, and what we can do to make them work even better, with my dislike of how frequently they fail to directly mention that these modifiable behaviors are only one aspect of risk. They may not be meaningful for most people in terms of absolute risk, or how hard they can be to modify.

Still, there’s no getting around the fact that if you can avoid blaming yourself for consuming a diet that featured candy in a starring role, knowing that a better diet may reduce risk is a good thing. Moreover, there are many diet modifications out there like fasting, restricted eating, ketogenic, Mediterranean or paleo and each has implications for overall health, other illnesses, drug interactions and so on. If you’re considering “eating healthy”, talk to your oncologist first. In addition to understanding interactions with your treatment, they may be able to connect you to a nutritionist skilled in helping people with cancer make better food choices.

Ever since I took part in a midwestern study that involved increasing the number of vegetables and whole grain food I ate; I’ve maintained a more balanced diet. I still don’t say no to everything considered unhealthy, but it has been surprisingly easy to incorporate more foods associated with better health. With high-sugar and high-fat options all around me during the last couple months of the year coupled with the annual reckoning on January 1st of “doing better”, the results of a French study that found an association between breast cancer risk and diet really interest me. The research showed that the straightforward World Cancer Research Fund (WCRF) 2018 food-based dietary guidelines were associated with a lower risk of breast cancer, especially in postmenopausal women.

I say the guidelines are straightforward because, let’s be honest, they are recommendations we’ve seen before: Eat more whole grains, vegetables, fruit, and beans while limiting fast food, red and processed meat, and processed foods high in fat, starch, and/or sugar. It’s here that my personal experience on the study near my home comes in handy--limiting is oh-so-hard but is made much easier if you adhere to the first part since you’ll be less hungry and probably feel better if the main focus is on adding in healthy food.

They also found, specifically, that a diet with a higher glycemic load and foods with a glycemic index greater than 55 were associated with increased cancer risk, especially breast cancer. The word “associated” is important and far different than saying these foods or this diet caused cancer. As with “prevention” versus “risk reduction”, words matter here: An association means exactly what it says and does not claim that association caused the event. In addition, the study authors were quick to point out that more research is needed to definitively show that glycemic index and glycemic load are modifiable risk factors for primary prevention of breast cancer.

So, what is the glycemic index of food? Essentially, this is what is used to monitor your food if you are diabetic. As you might imagine, low glycemic foods include things like green vegetables, many fruits, and beans; medium glycemic foods include bananas and oat breakfast cereals; and high glycemic foods are white rice, white bread, and other processed foods. Finding foods below that 55 GI level shown in the study is not difficult--I’ve been using this 

 as a resource--and I am focused on rebalancing my diet for 2021 by emphasizing those foods.

I do not and will never blame myself for developing cancer, yet I understand that a healthy diet is one thing I can control that allows me to feel better every single day. And if it helps me reduce my risk for another cancer? Even better.

Martha Carlson | Contributors

Count Me Among The Breast Cancer Recurrence Project

Looking At Year 7 On This 'Cancerversary'

Talking About The Side Effects From Cancer

How Your Diet Impacts Breast Cancer Risk

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