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

I’ve been asked a lot of times about how cancer has changed me. I usually answer that I’m the same person. I haven’t become kinder, smarter, more patient or more accepting. There are people who could convincingly argue just the opposite has occurred.

Still, in one way, cancer has been a catalyst for me. Living with cancer has brought a huge variety of people into my life and it has put me in situations far removed from my pre-cancer world. For instance, without cancer, I’d never see up-close the reality of Black women and men with breast cancer left out of important conversations.

I live with the memory of an afternoon just last year during a cancer webinar when the presenter remarked that the scientists at Tuskegee during 

 (1932-1972) probably didn’t intend harm, or something to that effect. I know I took a sharp breath at the comment and can still feel my heart racing, but I didn’t say anything. On screen, I looked at the other people attending. Several were Black, and among them were people I knew personally and admired.

It didn’t occur to me to say something in that moment. I don’t like to admit that. The presenter had moved on. But one person did say something a few minutes later, pulling the conversation back to the Tuskegee comment. That person, who was Black, also lived with metastatic breast cancer and would die from it just months later.

I forget a lot, but I hope I never forget hearing Chawnte’s voice as she explained how wrong that statement had been and why it mattered. I still regret staying silent. Race and racism are hard to talk about. It’s hard to know how to do it “right” and for sure I’ve made – and will continue to make – a lot of mistakes.

Around the same time, I started to help the Metastatic Breast Cancer Alliance with a project called Black Experience of Clinical Trials and Opportunities for Meaningful Engagement (BECOME) brought to them by Stephanie Walker, a retired pediatric trauma and hospice nurse living with metastatic breast cancer. Stephanie had been asked by the late Marina Kaplan, who was also a metastatic breast cancer advocate, to survey Black women and men with metastatic breast cancer about clinical trials.

The statistics on the topic stopped me in my tracks. Clinical trials provide hope and better treatments, but Black people are left out through non-participation. Stephanie wants to find out why that is, but also outline actions that industry, researchers and support organizations can take now to increase the clinical trial participation of Black people with metastatic breast cancer.

Without my own diagnosis, I wouldn’t have known about the racial disparity in cancer treatment and outcomes. When it comes to breast cancer, Black women are diagnosed at a younger age than white women, are 40% more likely to die, far more likely to have triple negative breast cancer (TNBC) which lacks targeted therapies and can face socioeconomic factors that make getting good care more difficult.

I didn’t know until last year that Black women with highly targetable HER2+ breast cancer were 25% less likely, according to a 

 of 2010-2011 data, to have received Herceptin (trastuzumab) than white women when adjusted for other factors.

 in May 2021 that evaluated racial and ethnic differences in treatment and outcomes of over 23,000 women with TNBC. The authors, from the Washington University School of Medicine, stated the findings with appropriate bluntness. “In this retrospective cohort study, African American women with nonmetastatic TNBC had a significantly higher risk of breast cancer mortality compared with their white counterparts, which was partially explained by their disparities in receipt of surgery and chemotherapy,” they wrote.

In other words, African American women were not getting the same treatment as white women.

These are the facts about Black women and men with breast cancer. They’re why we need to see the racism in cancer care and why clinical trial enrollment needs greater diversity and representation. I think Stephanie’s survey will lead to solutions. Patient-led research for patient-centered answers can make a difference.

I would never have expected myself to be an ally in the drive to change this picture. But, here too, I listen for Chawnte’s voice not backing down, I pay attention to Stephanie and the Black patients driving BECOME, and I’m learning to be there in any way possible. Things don’t change unless we stand up, unless we say, “This is not okay,” and force a better future.

The BECOME survey is available until mid-June at 

https://swsurveylh.com/MBCBECOME/login.html

For more news on cancer updates, research and education, don’t forget to 

Articles

“Understanding and taking action against racial differences in cancer care and clinical trial participation are made more powerful when we listen to patient voices,” writes one patient with breast cancer.

Breast Cancer Made Me A Better Ally

When you’re a patient, it can feel like you’re at the mercy of so many outside forces – doctors, the hospital system, insurance, geography, research – as well as the seeming betrayals of your own body’s aging, ill health and genetics. I get tired of being a patient, not only because it costs money and time, but because to be the best patient, you need to be vigilant. Vigilance is tiresome.

How can you look out for every eventuality? You can’t, of course.

Recently, I was at my parents’ house when their hospital system was shut down by a hacker. The system hasn’t yet said if it was a ransomware attack looking for money or if patient data has been stolen. But it is now nearly two weeks in, and like all the system’s patients, my parents can’t access their patient portals. Their doctors can’t look at records, planned courses of action or even easily coordinate with nearby labs for bloodwork. Some patients are being admitted to other hospitals.

My own parents have been affected and I am worried about them.

We rely on people outside of ourselves to keep our records safe and to be prepared to continue care and operations as smoothly as possible if something happens to make electronic communication impossible. That said, there are things we can do as patients to ensure that we still have most of our data if our records become irretrievable. If you, like me, have been lax about keeping all documents in a binder, here are some tips that might get you back on a better track.

 The first step is to become familiar with your patient portal. This is the electronic location where you can find past and future appointments, medications, health issues, message your doctors and more. If you are the only one with access to it, consider whether or not it could be useful to give log-in information to a spouse, child or other trusted person. If you decide to do this, be sure to update them if your access information changes, like if you change cancer centers or create a new password.

 The reason the first step is important is because of the new 

, which made it federal law that eight types of health records be made available to patients, free of charge. More information is available through OpenNotes 

, where you can also learn about exemptions to this rule, and in step-by-step format from the federal government 

. On my cancer center’s patient portal, accessing records is now relatively easy and it is a straightforward process to download and save any or all of these, spanning seven years of treatment in the same system with multiple physicians.

 If you are uncertain that downloading your records to your computer is enough, you can print them out (be ready for a lot of repetitive information) and/or save them to a flash drive or an external hard drive.

 Scan images are not available on my patient portal. To get the images, I still need to request them in person – something I have only done once. I know this is an area in which I have been remiss, since having the images is important for a complete record. To get around what is an unreasonable burden for someone who already spends so much time at the cancer center, I turned to 

 to collect all my health records, including digital files of scans. Prior to the 21st Century Cures Act, I’d used Ciitizen to collect my written records, but requesting scans requires checking an additional box. This company helps cancer patients across the United States access their complete records relatively quickly. There is no cost to this service, and the company has other aspects that might interest you, such as a clinical trial matching database. I am comfortable with its privacy guidelines, which are easily found on its website.

 With all our health data now available electronically, subject to hackers and misuse, it is important to read about how companies and applications safeguard what you share. If you’re unsure that something is safe, err on the side of caution and don’t share your data until you are satisfied about safety.

It is also important to read the documents containing your health information. Sometimes patients find errors that could impact treatment and it is important to correct those. Triage Cancer has 

 about medical records, including what to do if you find an important error.

A patient offers advice on getting patient portals, electronic medical records and technology organized and functioning correctly.

Five Steps to Getting Your Medical Information In Your Hands

I relentlessly follow doctors and researchers on social media who cross my virtual path when they use the phrase “chemotherapy-induced peripheral neuropathy” (CIPN). I check out the various trial search engines for possible new interventions and I try not to miss virtual conference posters or presentations about CIPN. I’m just slightly obsessed.

my life with this side effect of cancer treatment

. It’s a common adverse event with a variety of chemotherapy treatments, one that many people are able to manage, minimize or avoid altogether. You can learn more about what CIPN is 

When I underwent 6 months of weekly treatment with Taxol (paclitaxel), everyone in my care circle kept tabs on the neuropathy I was starting to experience. I often felt encouraged by the guarded hope that this adverse event would most likely diminish or disappear once Taxol treatment ended. I took those positive thoughts to heart and possibly tempered my description of what I was experiencing to the point where it was impossible for anyone to get a clear picture. I don’t like to blame myself — despite it being so easy to do — but this is one area where I’ve found it difficult to let go of self-blame, even though I didn’t have CIPN risk factors outside of receiving a taxane.

Blaming ourselves for cancer and the countless aftereffects of its treatments is always in the air. I try hard not to breathe it in. Still, I frequently ask myself if I adequately expressed the numbness I was feeling, or if I even still fail to get the point across. Descriptive words don’t come close to expressing what it’s like for me to live with CIPN. Numb, tingling and weak don’t cut it, though I rely on them. It’s more accurate to talk about the effect rather than the physical feeling, such as how I can’t easily hold a pen long enough to write a letter and at times have to concentrate on my feet while taking a walk around the neighborhood. So often, what is discussed is neuropathic pain that is shooting or electrical, but what I’ve experienced is progressive numbness and weakness.

Since this initial damage happened during the first months of what have turned out to be welcome years of life with stage 4 cancer, I try not to feel disappointed in myself for not knowing how to talk about it or ask for things that I now know, with 20/20 hindsight, may have made a difference, such as hand/foot icing (cryotherapy), reduced dosing or other treatment changes.

I remember a day, nearly 6 years ago, when I spoke to a cancer researcher about my CIPN and commented on the lack of treatment clarity. At the time, he told me that this side effect, while terrible to live with, doesn’t get full attention because it isn’t as glamourous as discovering a groundbreaking anti-cancer therapy. This response still makes my blood boil, in part because research funding shows it is accurate. I went back to him just this week to see if he still felt the same. I’m taking comfort in his reply that the study of lasting side effects and other damage from cancer and cancer therapies is gaining momentum. 

I want to believe it’s not just research but real implementation gaining speed, for the sake of all of us living longer and desiring the best possible quality of life. Unfortunately, when I got home and searched clinical trials.gov for CIPN treatment studies, nearly all exclude people living with advanced cancer.

A patient discusses her experiences with long-term side effects from cancer treatment and details her frustration with the lack of focus on chemotherapy-induced peripheral neuropathy in patients with advanced cancer.

Patients with Long-Lasting Chemotherapy-Induced Peripheral Neuropathy Need More Attention

Did you know that there’s a theory of uncertainty for those living with chronic health issues? I didn’t know that until I looked at the references in recent research when I was reading about better quality of life for people living with metastatic cancer.

From the moment of my diagnosis with metastatic breast cancer, uncertainty has been a given. Yes, it was called a terminal diagnosis but when? How? Would I recognize the signs? In the early days, people would try to find common ground with me by saying that the only certainties are death and taxes. Word of wisdom to those looking for the right things to say: That sentiment is not it. I also remember the intensity of my uncertainty as it began to dawn on me that I might be someone who not only reached the 36-month average life-after-diagnosis of metastatic breast cancer but lived beyond it.

my seventh year of life with breast cancer

 that had spread to my lungs at diagnosis. I can’t point to anything special about me to explain my treatment results. I am exceptionally lucky within an unlucky bunch of people to have a cancer that, so far, has responded well to treatment.

Go back to my last sentence. See that “so far?”

That sort of disclaimer is in everything I write, say, and even think about cancer. I’ve never asked my friends what they think as I sneak in a “so far” whenever they ask me something about my life with cancer. I hope they know it’s not a pessimistic take on what my future holds. “So far” is an acknowledgement that I am still living in what could again be a very bad place. It means I know what could happen but that right now it is not happening. Or, if it is happening, that so far it isn’t as bad as it might get, and it could get better or maybe stay the same. That’s uncertainty.

I don’t know what the next scan, or echo, or blood test might bring. I don’t know if I will continue to tolerate Herceptin (trastuzumab) and if my cancer cells will continue to be controlled by it. I don’t know what will happen with my friends who have metastatic or other incurable cancer, if or when they will run out of treatment options, if they will decide hospice offers a better life even if it’s shorter. I don’t know if that “watch and wait” uttered by a doctor means she thinks there’s nothing to worry about or if it really means there’s no hope.

It turns out that in the theory of uncertainty and chronic disease — the theory uses the word “chronic” because it means not acute — there’s also the idea of managing uncertainty. Over the years, I’ve tried, kept, or discarded countless methods of managing the unknowns of living with cancer and cancer treatments. Practically speaking, that’s meant gathering information, becoming knowledgeable about the illness I live with and how it is in my specific body, learning to be open with my doctors about what I know and need while respecting their knowledge and skill even when they can’t possibly know everything, seeking out support from people and organizations. These are all methods that research backs up as useful.

The goal can’t be to eliminate uncertainty since that’s impossible in cancer and in life, but it can be to learn to live with it in a way that leaves space for whatever future presents itself. That’s my theory of uncertainty, anyway.

For more news on cancer updates, research and education, don’t forget to

A patient with metastatic cancer writes about how the unknowns of her disease have shaped her life and health experiences, and how she has learned to live with that uncertainty.

Martha Carlson

Breast Cancer Made Me A Better Ally

Five Steps to Getting Your Medical Information In Your Hands

Patients with Long-Lasting Chemotherapy-Induced Peripheral Neuropathy Need More Attention

Although it’s Impossible to Eliminate Uncertainty in Cancer and in Life, it’s Possible to Live With it

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