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

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.

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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.

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

I’m not going to do the math, but I’ve been receiving treatment for metastatic breast cancer since January 2015, which includes an echocardiogram every three months. My cancer center and oncologist are so careful about those every-three-month echocardiograms that my treatment would be postponed if I were to miss one.

There’s a reason that echoes are a requirement for my ongoing treatment: Herceptin (trastuzumab) has been shown to cause damage that affects the ability of the heart to pump effectively. Heart damage is a known potential side effect of newer treatments, like Herceptin, and older, more traditional chemotherapies.

Understanding Heart Problems After Cancer Treatment

About two years ago, I joined a study at my cancer center looking at the usefulness of heart medications for people receiving Herceptin. I was assigned to the non-intervention group, which means I was in the study, but I was not going to receive any additional medications. At the time, with five years of Herceptin under my belt, I felt confident that my heart was handling my every-three-week IV infusions relatively well. There were the fluctuations that always seem to come with medical tests, whether due to me, the drug, the technician, or the tool, but I had never had treatment delayed because what was being measured (left ventricular ejection fraction) always remained above the pre-determined level.

Then came last month. My cancer scans showed I was still having a great response to Herceptin and Perjeta (pertuzumab) but the echo had my oncologist concerned. The questions asked during my appointment reinforced that concern — did I ever feel faint, did my heart feel like it was beating irregularly — but I hadn’t noticed anything different. Still, I was quickly referred to a cardiologist within the same hospital.

I’ll cut to the chase here and tell you that a subsequent test showed that my left ventricular ejection fraction remained adequate for continued treatment and that the global longitudinal strain had recovered and also indicated I could continue treatment with no changes.

I felt and feel reassured, but I have an extra appointment with my oncologist and another one scheduled with the cardiologist. I can’t guess what they will say, but I know what I want to discuss:

This relatively new field within cardiology is described by Mayo Clinic as, “Doctors trained in heart disease evaluate and treat people who have heart disease or who are at risk of heart disease before, during and after treatment for cancer.” As it turns out, according to the American Heart Association, older women (I’m not there yet but am gratefully heading in that direction) who’ve had breast cancer treatment appear to be at risk for long-term heart complications. Of course, this risk depends on the treatment received, overall health and more. My cancer center, though part of a university system with active research, doesn’t have a cardio-oncology specialty or department. To see a specialist, I’d most likely go to one of two NCI-designated cancer centers in my area; I’d have to pay out-of-pocket for this consultation because of my insurance.

Preventive use of heart medications is part of what the study I’m in is looking at. The cardiologist explained that I have other health considerations that mean I might not be the best person for such heart medications but that, if necessary, we could try them.

I know people who get Herceptin at intervals longer than every three weeks. Is this something that could help my heart and is it an acceptable treatment adjustment? The other drug I’m on for cancer also shows potential heart complications — is there anything we can do to alleviate that risk?

Practically speaking, getting regular treatment with cardiotoxic cancer drugs means that heart damage is a risk regardless of what I do. Still, I’d like to know what the oncologist and the cardiologist have to say. If the standard advice of eating well, exercising, and maintaining a healthy weight is all that can be suggested then I know I’m already doing what I can.

I am grateful that my oncologist is proactive and watchful. Living with ongoing cancer treatments is a minefield of potential dangers. I’ve known since that initial echo in 2015 that my heart was one of those spots where stepping carefully was an absolute must. If you’ve been tempted to ignore or downplay warning signs, consider talking to your doctors instead.

A patient with metastatic cancer writes what it has been like to face the dilemma of receiving an effective cancer therapy that may put her heart at risk.

Don’t Go Breaking My Heart

The email was short: “What has been your experience with the COVID-19 vaccine?”

My equally short reply, in the interest of not alienating a friend who cares: “My vaccine experience has not been great.”

My “vaccine experience” has been waiting for the vaccine to reach me. As someone living with cancer, waiting is an all-too-familiar fact of life.

This waiting, however, is different. I’m waiting, but now I’m also watching as less at-risk people pushing ahead and receiving the vaccine before me.

, it is hard to avoid the idea of how little value my life has to society. Patients actively receiving treatment (particularly those with lung and hematologic cancers), regardless of age, are at greater risk of dying from COVID-19, at greater risk of severe complications, and apparently even at greater risk of contracting the virus when compared to same-age healthy people. 

My “experience” has meant doing everything possible to protect myself, while hoping others do the same. In the highest risk situation, when I needed to travel due to a death in the family, I drove alone and stopped infrequently.

I knew then and see now that when it comes to value, people under 65 with serious health concerns seem to matter very little when it comes to receiving the vaccine

. There really isn’t any other way to explain the failure of so many in power to look at the data and acknowledge that the risk of dying, the risk of spreading the virus, the risk of overwhelming the hospital system is greatest among those with considerable health risks. These risks exist even if the person is under 65, where children, jobs, and family responsibilities weigh heavily.

I see it on the local school board, where parents pushing to maximize in-person learning have been a vocal and insistent force since last summer. I, too, want in-person learning. I want my son, who is approaching his final quarter as a high school student, to “go back to normal.” I want to be able to trust that the families, the children themselves, and the staff are honest and invested in keeping the community safe. Yet, as with the plea for vaccine eligibility, I am led to believe that my life has less value than anyone else in the equation.

I sound like I feel sorry for myself, but what I feel is anger and sorrow for us all. I watch as the people who push to re-open everything talk about the vaccine, making statements that the unvaccinated and those at risk can protect themselves but that “the rest of us should live our lives.” I wonder how I counted some of them among my friends.

This past year has been both so fast (how have hundreds of thousands of people died unnecessarily in such a short amount of time?) and so dreadfully unchanging that I can easily recall hospital systems, cities, and states putting out COVID-care guidelines for someone such as myself, someone whose expected return on investment was not adequate should I land in the hospital. 

So, I sit here wondering when I might be eligible. Despite my state moving people such as myself up a half a tier, my county has refused to do so. As I wait and watch, I think about the people who denied the virus, whose irresponsible push to re-open everything contributed to the awful winter surge, and I judge them harshly.

You bet it hurts when you have evidence that your life doesn’t have the value of someone who works alone in a lab, or an animal shelter, or is a work-from-home hospital administrator.

You’d better believe it has changed how I think about people.

How’s that for a “vaccine experience"?

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Vaccine eligibility forces this metastatic breast cancer patient to confront the value society places on her life.

Make Room For The Under-65s: What the COVID-19 Vaccine Rollout Has Taught Me About My 'Value'

When you live with cancer, there are all sorts of emotional landmines to navigate. For me, one of those rolls around annually in February as it is “National Cancer Prevention Month.”

That’s because at one time I was innocent enough to think my personal choices were enough to prevent me from getting cancer. What I didn’t understand was that “cancer prevention” for the individual is primarily cancer risk reduction.

I was falling for what so many people without cancer, and some cancer survivors, believe: If eating a healthy diet prevents cancer, then I am safe. If exercising prevents cancer, then I am safe. If breastfeeding prevents cancer, then I am safe. If not smoking prevents cancer, then I am safe. If using sunscreen prevents cancer, then I am safe.

You see where this is going. Everything to prevent cancer was within my control. Except it wasn’t.

That’s because modifiable behaviors aren’t the full story in cancer development. Even when we know better, we don’t want to believe that our personal “good choices” aren’t enough to keep us safe from the monster of a cancer diagnosis. It’s why, when someone learns my mother-in-law died of lung cancer, the very first question is whether she smoked (she did not). It’s why I still give myself pep talks about my good habit of exercising most days, wanting to believe it’s one reason my cancer hasn’t further progressed. Of course, that isn’t accurate. I have had a best-possible response to my first line of therapy. That’s the most powerful anti-cancer behavior in my life.

This cancer prevention month, in addition to those behaviors you can modify on your own (diet, exercise, smoking, sunscreen, weight, etc.), I’m looking at six ways each of us can possibly reduce risk through our medical and societal choices.

I usually hate when people equate getting a mammogram with preventing cancer. Yet, I believe in personalized breast screening that considers family history, breast density, age and race. Colon cancer screening — colonoscopy — may include removal of pre-cancerous polyps. This traditional colon cancer screening involves temporary unpleasantness but can be a preventive intervention in individual cases.

 against multiple strains of the human papillomavirus has been shown to reduce pre-cancerous cervical lesions by over 20% in vaccinated women. It has also resulted in a less-dramatic drop of pre-cancerous cervical lesions in those who have not been vaccinated due to herd effects. HPV vaccination is recommended for children (boys and girls) between the ages of 9 and 12, and in non-vaccinated people between 13 and 26 years old. The vaccine Gardasil 9 has been approved for males and females ages 9 to 45. Infection with HPV strains can cause cervical cancer, as well as cancer of the vulva, vagina, anus, penis, mouth and throat.

In the United States, about a third of liver cancers are linked to hepatitis B and C viruses (HBV and HCV). HBV vaccination is recommended for children but can be administered to unvaccinated adults who are at risk (ask your doctor if that includes you). Though there’s no vaccine for HCV, there are now treatments with a 95% success rate. If you have HCV, consult with your doctor.

Ask about genetic testing. These tests can help you and your doctor find the most appropriate treatments if diagnosed with cancer and for preventive measures. If you find that you have a mutation that predisposes toward cancer and runs in families, such as BRCA1 or BRCA2, ask your relatives if they would like you to share that information with them. Though these discussions can be difficult, knowing familial risk can help your relatives make informed choices about getting their own genetic testing.

If you are Black and at high risk for breast cancer, a 

 shows that you are less likely than White women to receive prophylactic (preventive) surgeries and associated testing. Risk-management for breast cancer includes things such as gathering information, access to screenings, genetic testing, access to preventive interventions (oophorectomy, etc.). It is not right that Black patients are at a disadvantage, and it is important for everybody to understand that this happens so we can work to change the picture.

Beyond your personal choices that affect risk, “modifiable behaviors” such as smoking and diet, there are population-wide choices regarding industrial and environmental pollutants that can reduce risk as well. Air pollution has been linked to worse outcomes in lung cancer, but also in breast, pancreatic, and liver cancers. Tap water pollutants, certain plastics, and more have also been linked to cancer.

To honor National Cancer Prevention Month in February, one patient with cancer offers people some tips on how they certain medical and societal choices may help reduce the risk of cancer.

Martha Carlson

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

Don’t Go Breaking My Heart

Make Room For The Under-65s: What the COVID-19 Vaccine Rollout Has Taught Me About My 'Value'

Our Medical and Societal Choices May Help Reduce Our Cancer Risks

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