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

Martha Carlson received a diagnosis of metastatic breast cancer in 2015. Read all of 

It took a few years for me to embrace cancer advocacy as a part of my new life, but all it took was a little nudge from another patient to start exploring what opportunities might be out there. I quickly learned that there are different categories of cancer advocacy, and, as it turns out, some are better suited to me than others. If you have thought about how you might do more for your specific type of cancer or for cancer in general, welcome!

First, think about what you like to do now, what you would like to learn how to do, and don’t forget to dream big — what would you do if you could do anything to change the cancer picture? Chances are there are examples of patients doing those things and more all around you.

Next, learn a little bit about three overarching advocacy roles:

Self-advocacy includes advocating for your own best care and quality of life. Sounds simple, right? But for a lot of us, this one remains a hurdle even when we are experienced with speaking on behalf of others. Learning how to speak up for yourself and interact with health care providers who may have goals that differ from your own is huge. For me, self-advocacy also involves public interest work, like what I am doing right now: sharing knowledge and ideas for making life better with cancer through my writing and through podcasts.

Research advocacy has expanded over the years. For metastatic breast cancer, some research advocacy entails fighting for more research and research funding. Research advocates also often work with research teams to provide the patient perspective; they may collaborate on scientific posters and publications or write their own opinion pieces. There are even research advocates conducting research.

Political advocacy is exactly what it sounds like: trying to effect change in the health care system through lobbying at the federal, state or local level. This might be an individual effort, such as having your town declare a day of recognition, or it may be part of a large organizational effort seeking to get national laws passed and funding increased. Breast cancer is fortunate to have numerous organizations that work to change the system. An example of this is Metavivor’s Stage IV Stampede, where patients visit congressional offices in an effort to increase support for important bills.

For me, the three advocacy umbrellas work together, and I suspect it is that way for most people who are active in cancer advocacy. We are often called on to tell a story, which is an effective way to communicate needs and show others — whether it’s your own doctor or a congressperson — where change is needed. Because I have been living with metastatic breast cancer for nearly 11 years now (far past the median of 3 to 5 years), I’ve met many people who use the time they’ve been given to give amazing things to others, from teaching a single person how important it is to talk about side effects to creating a nonprofit to being pivotal in dramatic treatment shifts. Big or small, advocates do them all (and they all matter!), so if you have an interest, reach out to an organization you like to find out how to get involved.

This piece reflects the author’s personal experience and perspective. For medical advice, please consult your health care provider.

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Cancer advocacy can be a fulfilling endeavor, with various roles suited to different interests and skills. Self-advocacy involves advocating for one's own care and quality of life, while research advocacy focuses on influencing research priorities and funding. Political advocacy aims to effect systemic change through lobbying efforts. These advocacy roles often intersect, with storytelling being a powerful tool to communicate needs and drive change. Individuals living with cancer can make significant contributions, whether through personal interactions or larger organizational efforts, and are encouraged to explore opportunities to get involved.

An 11-year survivor of stage 4 breast cancer explains that everyone has a role to play.

So You Want to Be a Cancer Advocate

If you’re anything like me, you’ve learned to be careful talking about diet and exercise and life with cancer. So many people want a simple “fix” for what we live with, and sometimes that means those of us living with cancer get bombarded with unhelpful — or dangerous — advice that faults the patient for something she did or did not do in the past, usually including some form of body or diet shaming.

Still, there is a growing body of actual scientific research that indicates diet and exercise may reduce cancer risk and may even affect cancer progression. Promising as it is, that research is not yet at a point where specific diets and amounts of exercise are known, and it is often done within a narrow population — for example, early-stage, hormone-receptor positive breast cancer — that cannot be applied to everyone diagnosed with breast cancer of any type or stage.

Just like we have treatments targeted to our cancer subtypes, it is possible that lifestyle “treatments” will also need to be targeted.

My own experience with a diet and exercise research intervention for those living with metastatic breast cancer has been exciting, especially since far too often this type of research specifically excludes people living with advanced cancer. At the suggestion of my oncologist, I contacted the researchers of the Every Day Counts project, who have expanded the program to my own cancer center. The intervention arm includes weekly consulting with a physical therapist for exercise and dietary changes that are not extreme. You don’t cut anything out of your life; you add to it with vegetables and fruits, whole grains, exercise, and guidance around common stumbling blocks in “getting healthy.”

This research is looking at many things related to metastatic breast cancer and quality of life. What most interests me is improving my ability to move. I have been concerned for years about what will happen if I am lucky enough to grow old with stage 4 cancer: Will my muscles weaken too much, will my joints be able to age, will neuropathy brought on by chemotherapy make it so I will need a cane early, and so on? I’m a believer in controlling what you can control when it comes to cancer, and I also believe that giving patients something to control is part of the equation. Let’s just say this research was practically designed for me.

I have now been in the program for about 40 weeks. I have not lost weight (sigh), but because they do repeat Dexa scans and physical challenge tests, I know that my body has changed. I have added light but frequent strength training and rarely skip either walks or bike rides for cardio. After an initial drop in bone density during the program, due to an unrelated injury that kept me pretty limited for several months, my bone density has rebounded, and the muscle-to-fat ratio continues to improve.

I have been living with stage 4 cancer for nearly 11 years, and though I have been undeniably lucky to respond well to treatment, I have many of the issues that others face. So, I was very motivated to see the improvement on not just Dexa but also in the physical fitness tests I’ve done as part of the program.

My experience has been a reminder that we don’t know what we can do until we try. Living with cancer is a heavy weight to carry; too often, it is easy to forget that things within our control can lighten the load and help us feel like our lives are our own. For me, one of those things is movement, and I am grateful that research is catching up to what I and many other metastatic patients have found to be true.

To be clear, the program is guided and not unreasonably strenuous. The motivation and follow-through fell on me, as did my decision to adapt some exercises for my own body. Just like with diets, exercise has to suit the person doing it. What keeps me going may not work for you, and what is safe for me may not be okay for you. It’s never a good idea to start exercising without checking first with your healthcare team.

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Diet and exercise may play a role in reducing cancer risk and progression, though specific guidelines remain undefined. Research, such as the Everyday Counts project, explores lifestyle interventions for metastatic breast cancer, emphasizing personalized approaches. The author shares a positive experience with a program involving exercise and dietary guidance, noting improvements in physical fitness and quality of life. The program highlights the importance of patient empowerment and control over manageable aspects of cancer care. Individualized exercise regimens should be pursued with healthcare team consultation.

As a metastatic breast cancer patient, I want to control what I can, including my diet and exercise.

Exercise Helps Me Feel in Control While Living With Metastatic Breast Cancer

This World Cancer Support month, I’ve been thinking about what it’s like living full time in “cancer world.” Not only do I live with stage 4 cancer, my days also often include time spent talking with other people touched by cancer.

Most often this is because so very many people lives are affected by cancer. It can be hard to find the information you need 

, and I am grateful to have access to resources. When I was first diagnosed, it took me over a year and a half to connect with other people living with my diagnosis. I knew one person who was living with a Stage IV cancer (colon), but he was not connected with the larger cancer community.

We were able to commiserate with each other, but in terms what I actually needed (and didn’t know I needed), our 2-person cancer community was a bust. I also knew a number of women who had had early-stage breast cancer and though they meant well, their experiences were really nothing like what I was confronting with a prognosis that gave me just 3 to 5 more years (thankfully, I’ve lived well beyond that dismal statistic) and three pre-teen and teen children.

When I met my first fellow metastatic breast cancer (MBC) patient, she immediately connected me with organizations that had plenty of relevant information and opportunities to meet other people living with MBC.

People living with a specific cancer often know more about available resources than even our healthcare providers (sorry docs), because it is their own lives they are wanting to save. When I am asked for help from someone newly diagnosed or their loved one, my first response is to reach out to the many advocates I know from nearly a decade of involvement in the cancer world. There is something to be said for the so-called hive mind when it comes to getting the right care for cancer. I'll shoot out an email asking if anyone knows the best doctor, hospital, or treatment for liver, lung, or brain cancer and get back multiple suggestions, usually asking for more information because cancer is so complex there is almost always a need to drill down into the specifics of an individual’s diagnosis.

Though I don’t like the need for it, I do enjoy sharing what I have been told about cancers less familiar to me than breast cancer. However, what I really love is that most of these emails include offers to speak directly with the patient or family member, links to patient groups that provide factual and helpful information about treatments, side effects, support groups, and other resources.

When you know one person in the cancer world, you will never be alone. You will be surrounded by hundreds or thousands of people who want you to get the right care, who will help you find the words that a busy doctor will understand, who will explain the ins and outs of managing disruptive side effects, and remind you to live one day at a time and to remember that you are here now, living.

Recently, I was asked by my husband if I knew anything about oncologists specializing in colon cancer in Chicago. I know very little about colon cancer, but I knew exactly what group to turn to and they did not disappoint (colontown.org), helping this sister of a newly diagnosed young man find information as he starts his care. Because here is the truth: being diagnosed with cancer is a shockingly lonely experience even if you are surrounded by family and friends who love you deeply. There are a lot of unknowns for most of us and sometimes even the most expected choices (like searching the web for patient groups) may not come to mind because you don’t know they even exist.

When you’ve been healthy and suddenly are not, you deserve good information and support. I am forever grateful to my cancer advocate friends who remain willing to share everything they know if it might help someone else. In a time where too often people are focused on keeping everything for themselves and letting others struggle, it is impossible to overstate the gift of the cancer community.

Living with stage 4 cancer involves navigating a complex world of information and support. Connecting with others who share similar diagnoses is crucial, as they often possess more relevant knowledge than healthcare providers. The cancer community, characterized by its collective wisdom and willingness to share resources, plays a vital role in helping patients find the right care and support. Despite the inherent loneliness of a cancer diagnosis, being part of this community ensures that individuals are never truly alone, as they are surrounded by people eager to assist and share their experiences.

Living with stage 4 cancer taught me the power of community; connecting with others provides guidance, support, and hope in an often-lonely journey. 

Building Supportive Communities for Patients Navigating Cancer 

I know a lot about being a person living with cancer. I’ve been doing it for over 10 years, having started treatment for Stage IV cancer back in January 2015. I’ve had many opportunities to be my own best advocate, sometimes doing it well, sometimes poorly.

Because I have what I call “good patient” tendencies, I have to watch for times like these: not fully understanding what I’m being told but telling myself I’ll “google” it later; realizing I haven’t asked basic questions about the step-by-steps of a procedure; waiting until something gets worse to speak up; not taking up the space and time I deserve in the healthcare setting.

Not a single one of these behaviors leads to satisfaction with care.

My most recent cancer treatment session brought all of this up for me because even though I communicated my concern several times, I ended up with infiltration into the surrounding tissue during an IV of Herceptin. I was lucky it was “just” Herceptin, which isn’t a vesicant drug and unlikely to cause harm (though still possible). If a vesicant drug escapes the vein during treatment, it’s called extravasation and may require extra care to prevent or reduce lasting tissue damage.

I had learned of extravasation while receiving a taxane via IV rather than a port, because my port had to be removed due to clotting. Extravasation doesn’t happen frequently, but it’s important to know the signs of both infiltration or extravasation so that treatment can be stopped and risks reduced.

On this day, when the infiltration happened, I told the chemotherapy nurse that the IV didn’t feel right, but she assured me that there was blood return, plus I could taste the saline when the line started. I didn’t like how the IV placement felt, but my treatment currently takes under an hour, and I figured I could deal with it. Mistake 1: Denying what my senses told me, which was that something was wrong despite the normal signs of a good IV placement and reassurance from the nurse.

When an IV drug infiltrates tissue, two of the first signs can also be things that may occur normally, depending on the drug being given: pain or discomfort at the IV insertion site and coolness. Discomfort at the IV site can also happen for reasons like what vein has been used and even the impact of cold air temperatures or mild dehydration. Coolness at the IV site is a standard feeling for me when getting Herceptin, but I did feel like the site was colder than usual. Mistake 2: I looked at the area around the IV, decided it looked alright, and figured I was having some anxiety, which is also not unusual for me. So, I covered my arm with a blanket to warm it up.

Within a few minutes of this, I looked at the site again because the discomfort there felt a little more intense and saw there was possibly some swelling and the skin was paler. Swelling at the site and paler skin are additional indications of infiltration and extravasation. I called my treatment nurse over and told her, again, that something was wrong with the IV. She looked at it, reassured me again that it was fine, and turned to another patient. Mistake 3: I was certain there was infiltration, but I brushed it off in that moment.

Having told the nurse twice that I thought there was something wrong, I waited another 30 seconds and again looked under the blanket keeping my arm warm. Now there was clearly defined swelling around the IV. I loudly called for one of my regular treatment nurses.

The Herceptin was stopped, the oncology pharmacy was consulted, the IV was removed, and my arm was bandaged. I was told that there wasn’t much risk but to watch for discoloration and to call immediately if I noticed anything unusual with the site or my arm over the next few days. A new IV was placed in my other arm, this time by my familiar nurse, and everything went back to normal.

But I was left with the knowledge that despite advocating for myself, I still had a bad, could-have-been-worse experience. I knew the signs of infiltration and extravasation; I said something twice to my treatment nurse. Afterward, while finishing treatment with a new IV placed in my other arm, the nurse told me that I should have said something earlier. I replied that I had. Unfortunately, she repeated that admonition as I left. It’s no fun to be gaslit about healthcare, and it’s no fun to speak up and not be heard.

As has happened in the past, I’ll add this experience to my understanding of self-advocacy. A reminder that most of us know our own bodies far better than anyone caring for us. I could have been more forceful, and next time, rightly or wrongly, I expect I will be. Here’s to good care, healthcare providers who listen, and properly placed IVs.

Living with cancer for over a decade, the author shares insights on self-advocacy in healthcare settings. Despite being aware of the signs of IV infiltration and extravasation, the author experienced a challenging situation during a Herceptin treatment session. Despite voicing concerns, the author faced dismissive responses from healthcare providers, leading to a potentially harmful situation. This experience underscores the importance of trusting one's instincts and advocating assertively for oneself in medical environments, emphasizing the need for attentive healthcare providers and effective communication.

IV infiltration and extravasation remind this cancer patient of the constant challenges of speaking up and advocating for their own care. 

Martha Carlson

So You Want to Be a Cancer Advocate

Exercise Helps Me Feel in Control While Living With Metastatic Breast Cancer

Building Supportive Communities for Patients Navigating Cancer

IV Complications and the Challenge of Being Heard

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