Brenda Denzler is a writer and editor living in North Carolina. She received her doctorate from Duke University and worked as an editor at UNC-Chapel Hill before she was diagnosed with inflammatory breast cancer in 2009. Since then, she has devoted a great deal of her time and energy to understanding and writing about cancer, cancer treatment and the impact of pre-existing PTSD on the ability of doctors to give and patients to receive medical treatment.

Brenda Denzler

Brenda Denzler is a writer and editor living in North Carolina. She was diagnosed with inflammatory breast cancer in 2009. 

You’ve just been diagnosed with inflammatory breast cancer, and I know you’re scared to death. You have every right to be. Not only are you facing a very aggressive, low-survival form of breast cancer, but you’re being forced to deal with a medical profession that traumatized you repeatedly with their treatments and neglect when you were deathly ill as a very young child.

That experience left deep scars upon your psyche that you are only beginning to see. I wish I could tell you that you emerge from what’s ahead of you with the cancer defeated, the long-term treatment side effects limited to the loss of a breast, and the demon of your PTSD vanquished; however…

The path you now have to walk is not going to be easy. The treatments for cancer can be brutal — and yours will be. Not only medically, but in just about every other way that matters.

You will have to fight for every bit of detailed medical information you need to hear, because your medical team will not provide it forthrightly. They will hedge and feint. They want to tell you positive things and not, “bring the negative into the room.” Bring it in anyway. Do your homework. Then formulate your questions and politely insist on answers.

They will be unable to hear you when you explain, trembling and with tear-filled eyes, that you are 100% afraid of the cancer and 99% afraid of them and what they want to do to you. They’ll ignore your comment because they don’t see themselves as scary and refuse to engage with your self-insight. Or they’ll refer you to the oncology psychiatrist because they think your problem may be valid, but it’s yours alone and not one that is an important part of the shared relationship between you. Better give up on their “getting it.” They never will, which will cause all kinds of additional trauma for you.

You will have to stomp your feet and cause a scene to get several of your most simple requests met — like using the port that you just had put in instead of starting a peripheral line, all because the nurse isn’t experienced enough to be able to access the port properly and swears that it’s malfunctioning. It isn’t. Stand your ground. This increases your mistrust of them.

You’ll have to politely but very firmly insist on having input into key decisions — input that goes beyond merely “yes” or “no.” Don’t be faint-hearted. You’re not wrong to have your own ideas and want a say in what happens.

You’ll be told one thing will happen, and then something totally different will be done — often not for any medical reason, but just because “that’s how we do these things” or because “I forgot,” as if you hadn’t talked about it at length and written your agreements into your consent forms. Brace yourself. This betrayal will traumatize you in a big way all over again. You’re trying to build your trust in them, and their actions will repeatedly make it difficult to do so.

By treatment end in 2010, you will dislike them all… and dislike yourself even more because of your treatment-related PTSD. You’ll begin to think that it would be better if you were just dead. It wouldn’t be. But it will take you some time to be glad to be alive again. Hang in there.

Fifteen years later, you will be, remarkably, NED (no evidence of disease). That’s the good news.

But you will have heart damage (which was undiscovered and medically unowned for the first 12 years), secondary lung damage (ditto), and escalating peripheral neuropathy because of the cancer treatments, even though you were told those serious kinds of things “very rarely” happen.

You will still be afraid of doctors and their treatments, but you’ll have more control over your fear and will have learned how to negotiate medical relationships more effectively. You’ll still be angry about everything that happened. But you’ll be alive and more or less functional. And that matters, because…

You will have three grandsons, by then, and you will be a rock and resource for them when their lives get turned upside down. You’ll have written another book and a few articles about treatment-related medical trauma to help educate clinicians and reach out to fellow sufferers. You’ll have helped your parents face their own final illnesses. And you’ll get meaningfully wrapped up again in the things that captivated you when you were in grad school.

In short, you’ll struggle with how to be very grateful for life, but also very angry about what it took to be alive. Maybe in the next 15 years, we’ll figure it out?

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Articles

A patient diagnosed with inflammatory breast cancer faces a challenging journey, compounded by past medical trauma. The medical system often fails to provide clear information, requiring patients to advocate for themselves. Despite the emotional and physical toll, including PTSD and treatment-related side effects, the patient eventually achieves no evidence of disease. However, long-term health issues persist, and the fear of medical professionals remains. Over time, the patient finds purpose in family, writing, and advocacy, balancing gratitude for survival with anger over the medical experience.

I survived breast cancer and medical trauma, but the road was brutal. Fifteen years later, I’m alive, scarred and still searching for peace.

A Letter to My 2009 Self, Newly Diagnosed With Breast Cancer 

"It's like going into a bar fight," my friend explained cancer treatment to me. "You know going in that you're going to get hurt, but you try to hurt the other guy more." I figured he probably knew what he was talking about. He was, after all, a radiation oncologist.

But as my upcoming treatments for inflammatory breast cancer were laid out in front of me and I became aware of all the short- and long-term damage they could cause, I became hell-bent on avoiding getting hurt by them, no matter what my friend said. I wanted to emerge from the bar fight with only superficial wounds that would heal in no time. I wanted to walk into the sunset years of my life whole and undamaged.

I wasn't naive. I expected some pain, some suffering. Short-term hurt, I could handle. I became febrile and neutropenic after my first two chemo infusions. I rolled with the punches. I developed peripheral neuropathy. The skin on the soles of my feet became cracked and inflamed. I lost my hair. I was often nauseated. My arm hurt after my mastectomy, when I lost my lymph nodes and lymphatic fluid had a hard time flowing the way it should. These were the short-term harms of treatment, and I managed them.

What I tried very, very hard to avoid were the long-term harms — the harms that could make my sunset years more burdensome and unfulfilling. I dropped 50 pounds and, being one of God's original junk-food junkies, I reformed my eating habits. I fought like a madwoman to preserve as much lymphatic integrity as I could, in my surgical-side arm. I took measures to protect my heart from damage by the drugs and radiation. After treatment ended, I did moderate exercise four to five times a week.

In short, there are many things that could be said about me and how I went through cancer treatment. That I was devil-may-care and inattentive would not be one of those things. I worked hard to stay on top of everything so I could have a future — so I could survive the cancer AND the cancer treatments with my basic health intact!

It started with progressively increasing inability to do the exercises I was regularly doing, and my fatigue levels slowly climbed so high they were off the charts. After a year, I had begun panting hard when doing things that I could do without much trouble immediately after my treatments had ended. My muscles screamed with pain when I climbed the stairs to my office at work, and it took phenomenal amounts of energy just to reach out and pick up a pencil.

When I told my oncologist what was happening, the response was, "Well, it's not your cancer treatments. You should be all recovered from those by now."

, I thought. I knew I should be all recovered! But I wasn't, and I wanted to find out why. I was convinced it was the emergence of late effects of treatment. My oncologist denied all knowledge. Clearly, I was on my own with this.

As the years slowly rolled on, I remained cancer free, thankfully. However, my functional status continued its slow decline. I went from specialist to specialist trying to find an answer for what was going on and how we could treat it. I had my cortisol levels and my thyroid checked. I consulted cardiologists, a pulmonologist, a GI specialist, a sleep specialist, a neurologist, a rheumatologist.... I made a special trip out of state to consult at a clinic that supposedly focused on late cardiac effects of cancer treatment. I had lung tests and cardiac tests and sleep tests and blood tests galore and....

The tests. Basic, "gateway" tests that you have to flunk to qualify for more elaborate testing that might show something. I grew to hate them, because they inevitably said I was healthy as a horse — or very nearly so. Only minor anomalies here and there that physicians were not inclined to take serious note of. Nothing that would warrant further testing.

When the tests said I was fine, the doctors told me that the reason I was losing my ability to exercise was because I was deconditioned, meaning they thought I'd been lying to them about exercising regularly all along. How do you become "deconditioned" from doing exercises that you do all the time? You don't, normally. So they clearly thought I was lying to them about my level of activity.

As I lost not only my ability to exercise but also my ability to mow my lawn, walk the fence line on my property, carry groceries in from the car, climb the stairs to my front door, or even take a shower without exhausting myself, I was told that the reason my functional status was so bad was because I needed to lose weight. I had a reasonable BMI when the doctors first started telling me this. But as my fitness declined, I slowly regained the weight I'd lost.

And of course, there was the old psychogenic cop-out: "You're just anxious." Throughout cancer treatment and beyond, I was in therapy. The therapist watched me lose the ability to do things that had always given my days a shape and a tempo and meaning. Things I could do without a lot of trouble during and right after cancer treatment. As I piled up normal test results and endured dismissive consults with specialists, I asked my therapist if it all could be psychogenic and not physiological. Every time we discussed it, the verdict was no. Any psychological component to what was happening was secondary, not primary.

I finally quit looking for answers. I couldn't stand to be told any more that I was fine when I clearly was not, and I couldn't bear the thought of having one more dismissive note put into my electronic health record on the basis of tests whose results were considered more evidentiary than my statements. I figured it was OK that no one could figure out what was wrong. One day I'd drop dead because of this, and everyone would be shocked because I had been (on paper) so healthy! What could have made me die? they'd wonder. And they'd do an autopsy, and at last we'd have an answer.

As it turned out, though, I didn't have to die. I only had to feel like I was about to for long enough for the medical profession to finally take notice.

In the fall of 2021, I went up to the mountains with two friends to see the beautiful fall colors that have made the Appalachians famous. As we gained elevation, I became very short of breath—unable to speak without pausing to breathe mid-sentence. By the time we got to the hotel room that evening, I was so exhausted and weak that I could barely move, my heart was racing, my breathing was swift and shallow, my core body temperature was so low that I couldn't get warm, I felt shaky inside, my chest was tight, my skin was gray....

I knew what was happening. I had pushed myself too hard to have fun with my friends, and my body was reacting as it always did when I exerted myself. My friends wanted me to go to the ER, because they thought I was having a heart attack. I'd already checked out these symptoms in previous ER visits, and it wasn't a heart attack. Of that I was certain.

"Modern medicine has nothing to offer me," I said. "This is not a heart attack, and they don't know what it is. There's nothing they can do." Reluctantly, my friends let the matter rest, but not before making me promise to go — again — to my primary care physician and tell him what had happened.

So a couple of weeks later, I did. As I finished telling him about our trip, I said, "Thanks for letting me tell you about all these symptoms again. Now I've kept my promise to my friends. I know you and I have checked this out many times before and there's nothing modern medicine can do to help me. So I'm good, here." I stood up to leave.

"Wait! Wait!" he said. And that was the beginning of the end. The end of my quest for answers...and all without my having to die to get them.

My PCP ran a couple of tests that, as usual, came up fine. Instead of letting the matter rest there, this time he referred me to a new pulmonologist, who also ran tests that came up fine. He also refused to let the matter rest. Instead, he sent me out of state to get a special test that is not widely done, and the test came up with an answer! The reason I feel like I'm suffocating when I try to exert myself is because my red blood cells aren't transferring their oxygen efficiently to my muscles. In a sense, I feel like I'm suffocating because I am! I also have mild pulmonary hypertension.

With a diagnosis in hand that explained a lot, I took new hope. My pulmonologist said I could try pulmonary rehab to see if I could improve my functional status. As I exercised, the nurses would ask if I was experiencing any pain.

"Well, yeah," I gasped between breaths. "Tightness in my chest, and some pain radiating up into my neck. But this is normal for me. This happens all the time when I exert myself. It's not a heart attack. I've had it checked out many times already."

They were having none of it. Nor was the physician overseeing the rehab program. In all the tests I'd had done over the years, he noted, I had never had a left heart catheterization to definitively rule out blocked arteries as the cause of my pain.

So off to the ER he sent me with a chart note that I needed a left heart cath. At the ER, however, they did the traditional ECG, pulled blood samples, did chest X-rays, and told me patronizingly (as if it would be a revelation to me) that I was not having a heart attack and I could go home. I refused to go, however, without the left heart catheterization the rehab doctor had told me to get.

Long story short, I got it. In fact, I got a simultaneous left and right heart catheterization — and what I think is probably the final answer that explains my symptoms: I have atypical restrictive cardiomyopathy. My left ventricle, in particular, is stiffening and becoming less and less able to pump efficiently. That's what causes the pain when I exert myself. The pain is not a sign of an impending a heart attack. In fact, my arteries are nice and clear.

The cause of this stiffening, my new doctor (an onco-cardiologist) explained, was very likely damage due to my cancer treatments, which included high doses of an anthracycline and massive amounts of radiation. Studies have been showing, he said, that patients who have had this kind of treatment are at significantly higher long-term risk for suffering heart damage. The trick is, the damage doesn't necessarily reveal itself in diminished ejection fractions, which is the only thing breast oncologists have been trained to pay attention to.

So I'd been right from the very start. The bar fight that was my cancer treatment did hurt me permanently, despite my efforts to prevent it. The cancer didn't kill me, but the cancer treatments have seriously maimed me.

And I had been right to suspect a heart problem when my symptoms first began to develop. Everyone had been using the wrong measures to determine heart damage. Ejection fraction is not enough. Everyone was ignoring my higher risk due to type of treatment I received.

Of course, there will be some who will say we can't know for sure that the cancer treatments caused all of this, even if there are studies that say such treatments can do so. To that, I can only say this:

I can tell you when I first experienced the symptoms that came to dominate my life: nine days after my first infusion, and twice again in the following three days. Each time, the symptoms were ignored, when I pointed them out to the nurses. Instead of seeing them as a warning flag of possible damage being inflicted, they saw them, like so many doctors saw test anomalies in the years to come, as minor and inconsequential.

Today, as far as we know, I remain cancer free, which means I hurt the "other guy" even worse, thankfully. But because of that fight, there will be no living my sunset years whole and undamaged.

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As it turned out, I didn't have to die from my long-term cancer side effects. I only had to feel like I was about to for long enough for the medical profession to finally take notice. 

Cancer Treatments — and Its Long-term Effects — Are Like a Bar Fight

It’s been making a big splash in the oncology world and outside it—the news that a drug in the 

monoclonal antibody class has been effective in producing a durable remission

 lasting up to 25 months (to date) in just over a dozen rectal cancer patients. My inbox has been flooded with people sending me links to the many media reports on this stunning development. A cure for cancer! A cure!

While I am thrilled at the news, nowadays I know enough about cancer to view it with a few grains of caution, which I have shared with my friends.

The data need to be examined by third parties and the study must be replicated. It is not unheard of for research teams to make significant errors with their data or downright lie. So scientific “due process” needs to happen to be sure that this is really real.

"Cancer” is not just one disease. It is a category of diseases that share similar features in general but that also vary quite widely in specific mutations, cellular errors, metabolic defects, etc. That’s why what works like a charm for one patient with X diagnosis may hardly work at all (or not work) for the next patient with the exact same diagnosis.

For instance, “breast cancer” isn’t just one thing. It has types that are quite distinct and can make a big difference in how certain treatments work or don’t work. And more to the point, breast cancer isn’t the same as colon cancer. They’re both cancers and both share certain qualities that make them “cancer.” But the exact nature of some of those defects is not totally identical between the two.

What worked like gangbusters for rectal cancer may not work for all cancers.

However, the fact that this drug produced such wonderful results for this one very small segment of the cancer world serves as a kind of “proof of concept.” A similar method might be able to be developed for other types of cancers, to the improvement of all.

For example, chemotherapy was first tried in just a very, very few types of cancers that, back in the day, had no real treatments that had any effect. It wasn’t a cure-all, but in a setting where there were virtually no remissions, much less cures, it was a huge step forward (and did, in fact, cure a small handful of lucky patients back then), and gradually different kinds of chemotherapies were developed that worked better (or worse) on different kinds of cancers. We take chemo for granted, today. But it wasn’t always this way.

So the monoclonal antibody technology that these researchers have used to create this treatment may be applied to other cancers, similar to chemo cracking open and letting us have a peek inside. We just need to learn how to make the crack wide enough for more cancer patients with more types of cancers to walk through.

A “complete clinical response” is not necessarily a cure, meaning that the cancer won’t ever come back because it’s gone forever. But they’ve followed patients for up to 25 months (at the time the study results were reported) and there were no signs of recurrence yet. That’s a very good thing, and definitely a reason to hope.

I find it interesting to note that this is happening within an industry that is routinely vilified by alternative-medicine-only types for not “really” wanting to cure cancer. If we adopt the “a-miracle-occurred" stance toward this research, I guess we’d have to say that the cancer industry is making two mistakes at the same time: first in having found something that may possibly do exactly what the cancer industry never really wanted in the first place (to which I think, then why fund the research at all?) and second in publicizing the positive findings instead of keeping them tightly under wraps in a sealed vault deep in the heart of some government fortress in the guts of a hollowed-out mountain somewhere. 

Ah, but take heart. (Tongue now firmly in cheek.) Replication studies may not work, or (drum roll for the conspiratorial mindset, here) may be able to be manipulated to appear as if they aren’t working, so that this incredible breakthrough can be suppressed. After all, there’s never so much fun as when you’ve gotten the hopes of the gullible masses all pumped up, and then you can dash them again, right? What a thrill!

I do agree with my friends. This is very good news and very hopeful news. I’ve been watching with some surprise over the last dozen years since I completed my own treatment for inflammatory breast cancer. The newer systemic treatments that are being developed are game changers, as are the improved ways to detect recurrence earlier and the effort to find ways to make that discovery meaningful in extending the lives of terminal patients who we lose today—possibly, one day, to extend them even to the point of cure.

Cancer treatment seems to be entering a new era. I’m glad that I’m still here to see it.

Recent headlines have been highlighting a monoclonal antibody that eliminated evidence of disease in patients with rectal cancer, but I believe that findings from the research need to be taken with a few grains of caution.  

As We Enter a New Era of Cancer Treatment, I’m Taking Caution in Headlines Highlighting a Cure 

On the last day of June in two thousand and nine

Here I am, 12 years later, a survivor (for now),

More like “ambivalent,” I’m guessing.

(to the tune of the Twelve Days of Christmas)

In the 1st year post-cancer, my treatments gave to me

In the 2nd year post-cancer, my treatments gave to me

In the 3rd year post-cancer, my treatments gave to me,

In the 4th year post-cancer, my treatments gave to me,

In the 5th year post-cancer, my treatments gave to me,

In the 6th year post-cancer, my treatments gave to me,

In the 7th year post-cancer, my treatments gave to me,

In the 8th year post-cancer, my treatments gave to me,

In the 9th year post-cancer, my treatments gave to me,

In the 10th year post-cancer, my treatments gave to me,

A cancer survivor dedicates two spirited poems to living 12 years post-cancer.

Brenda Denzler

A Letter to My 2009 Self, Newly Diagnosed With Breast Cancer

Cancer Treatments — and Its Long-term Effects — Are Like a Bar Fight

As We Enter a New Era of Cancer Treatment, I’m Taking Caution in Headlines Highlighting a Cure

12 Years in Remission From Cancer

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