Cancer treatment and its long-term effects are like a bar fight

“It’s like getting into a bar fight,” a friend explained to me about cancer treatment. “I know it hurts, but I try to hurt the other person even more.” I thought he probably knew what he was talking about. After all, he was a radiation oncologist.

But with an upcoming treatment for inflammatory breast cancer presented in front of me and a realization of all the short-term and long-term damage it can cause, I knew that even if my treatment had nothing to do with it, I was desperate to avoid the damage caused by inflammatory breast cancer. said a friend. I wanted to get out of a bar fight with only superficial wounds that healed quickly. I wanted to walk through the twilight years of my life completely, unscathed.

I was not naive. I expected some pain and suffering. If it was a short-term injury, I managed to deal with it. After his first two chemo infusions, I became febrile and neutropenic. I rolled with a punch. I have peripheral neuropathy. The skin on the soles of my feet cracked and became inflamed. I lost my hair. I often felt nauseous. After my mastectomy, my arm hurt because I lost a lymph node and my lymph wouldn’t flow properly. These were short term harms from the treatment and I dealt with them.

What I tried so hard to avoid was the long-term harm, the harm that could make my twilight years more burdensome and unfulfilling. I lost 50 pounds and reformed my diet as one of God’s original junk food addicts. I fought like crazy to preserve the integrity of the lymphatic system in my surgical arm as much as possible. I took steps to protect my heart from drug and radiation damage. After completing the treatment, moderate exercise was performed 4 to 5 times a week.

In a nutshell, there’s a lot you can say about me and how I went through cancer treatment. It wouldn’t be those things that I was very worried and careless. I worked hard to make it all work out for the future. That way, I was able to survive the cancer and cancer treatment while maintaining my basic health.

However, I failed.

It started with my gradual inability to exercise that I used to do regularly, and my fatigue levels slowly climbed to the point of being off the charts. A year later, just after my treatment ended, I started panting violently when doing things I could do without much trouble. My muscles screamed in pain as I climbed the stairs to my office at work, and it took an incredible amount of energy just to reach out and pick up a pencil.

When I told my oncologist what was going on, he said, “Well, it’s not because of your cancer treatment. It should be over by now.”

No @#&!, Sherlock,I thought. I knew I needed to recover all! But I didn’t, and I wanted to know why. I was convinced it was the emergence of late effects of treatment. My oncologist denied all knowledge. Obviously, I was working on this on my own.

The years passed slowly, but thankfully I didn’t get cancer. However, my functional status continued to decline slowly. I went from expert to expert trying to find out what was going on and how I could treat it. I had my cortisol levels and thyroid tested. I consulted a cardiologist, pulmonologist, gastroenterologist, sleep specialist, neurologist and rheumatologist. I specifically traveled out of state to see a clinic that allegedly focuses on the late heart effects of cancer treatment. I had a lot of lung tests, heart tests, sleep tests, blood tests…

test. A basic “gateway” test that must fail to qualify for more complex tests that might indicate something. I hated them because they inevitably said I was fit or close to being fit as a horse. There are just minor anomalies here and there that doctors don’t tend to give serious attention to. Nothing justifies further testing.

When the tests said I was fine, the doctors said I was losing the ability to exercise because I was getting worse. In other words, the doctors thought I was lying all along about exercising regularly. Why is it that the exercise I do all the time makes me “unwell”? Usually not. So they obviously thought I was lying to them about my activity level.

Not just the ability to exercise, but also to mow the lawn, walk the fence on the property, carry groceries from the car, climb the stairs to the front door, and take a shower without exhausting yourself. I can no longer. I was told that the reason my functional status was so bad was because I needed to lose weight. My BMI was reasonable when my doctor first started telling me this. However, as my physical strength declined, I gradually regained the weight I had lost.

And then, of course, there was the old-fashioned psychogenic crackdown of “you’re just worried.” During and after cancer treatment, I was in therapy. The therapist watched me lose the ability to do the things that always gave shape, tempo and meaning to my days. What I was able to do without too much trouble during and immediately after cancer treatment. Piling up normal test results and enduring negative consultations with specialists, I asked my therapist if this could all be psychogenic rather than physiological. Every time we discussed it, the verdict was no. The psychological component to what is happening is secondary, not primary.

I finally stopped looking for answers. I couldn’t stand being told I was healthy when it was clearly not. I also couldn’t stand the thought of even more negative notes being written on my electronic medical record based on a more considered examination of the results. Evidence from my statement. I thought it was okay if no one understood what the problem was. One day I will collapse and die because of this and everyone will be shocked even though I was (on paper) very healthy! what made me die? they will wonder. And they’ll do an autopsy and we’ll finally have an answer.

But after all, I didn’t have to die. I only had to feel that it was going to be long enough for medical professionals to finally take notice.

In the fall of 2021, two friends and I climbed the mountain to see the beautiful fall foliage that the Appalachians are famous for. As the altitude increased, I became so breathless that I could not speak without holding my breath mid-sentence. By the time I got to my hotel room that night, I was so exhausted and weak I could barely move, my heart was pounding, my breathing was rapid and shallow, and my core temperature was so low that I couldn’t warm up. , my heart trembled, my chest tightened, my skin turned gray….

I knew what was going on. I was pushing myself too hard just to have fun with my friends, but when I put in the effort, my body responded as usual. My friends thought I was having a heart attack and told me to go to the emergency room. I had seen these symptoms in a previous emergency room, but it was not a heart attack. I was sure of that.

“Modern medicine has nothing to offer,” I said. “This is not a heart attack. They don’t know what it is. There is nothing they can do.” I made him promise to go and tell me what happened.

So a few weeks later I did. When I finished telling him about our trip, I said, “Thank you for letting me talk about all these symptoms again. Now I have kept my promise to my friend. I know you and I have confirmed this many times before, And modern medicine can’t help me, so I’m fine here.” I got up to leave.

“Wait wait!” he said. And it was the beginning of the end. The end of my quest for answers…and I got them without dying.

I ran some tests on my PCP and it worked fine as usual. Instead of leaving the problem there, he now referred me to a new pulmonologist, who also ran tests and the results were good. He also refused to let the matter go. Instead, he sent me out of state to take a special test that wasn’t very widely done. And the test gave me the answer. The reason why you feel suffocated when you try to exert force is because the red blood cells are not efficiently conveying oxygen to your muscles. In a way, I feel like I’m suffocating because I’m there! I also have mild pulmonary hypertension.

With a diagnosis that explained a lot, I had new hope. The pulmonologist said I could try pulmonary rehabilitation to see if it could improve my functional status. As I was exercising, the nurses asked if I was in pain.

“Right,” I gasped, gasping. “I have a tightness in my chest and pain that radiates to my neck. But this is normal for me. No, I’ve already been tested many times.”

They didn’t have any of it. There was no doctor to oversee the rehabilitation program. Of all the tests I’ve had over the years, he noted, I’ve never had a left heart catheterization to definitively rule out an arterial blockage as the cause of my pain.

So I went to the ER and he sent me a note on the chart that said I needed a left heart catheter. But in the ER, they did a traditional EKG, took a blood sample, did a chest x-ray, and (as if it was a revelation to me) patronizingly told me I was having a heart attack. I said it’s okay to go home because I don’t have one. . However, I refused to go without having a left heart catheterization done by a rehab doctor.

I understand the early story. In fact, I had both left and right cardiac catheterizations at the same time. The final answer that probably explains my symptoms is that I have atypical restrictive cardiomyopathy. The left ventricle, in particular, becomes stiffer and less able to pump effectively. That’s what causes pain when you put pressure on it. This pain is not a sign that a heart attack is imminent. In fact my arteries are clean and clear.

This stiffness was most likely caused by damage from my cancer treatments, including high doses of anthracyclines and high doses of radiation, explained my new doctor (oncology cardiologist). gave me Studies have shown that patients who undergo this type of treatment are at significantly higher risk of long-term heart damage, he said. Importantly, damage is not always manifested by reduced ejection fraction, the only thing breast oncologists have been trained to pay attention to.

So I was right all along. The bar fight that was my cancer treatment permanently scarred me, despite my efforts to prevent it. Cancer didn’t kill me, but cancer treatment left me severely disabled.

And I was right to suspect a heart problem when the symptoms first started appearing. Everyone was using the wrong scale to determine heart damage. Insufficient ejection fraction. Everyone ignored the high risk associated with the type of treatment I received.

Of course, some would say that we can’t know for sure whether cancer treatments are responsible for all this, even if there are studies that say such treatments may be the cause. . I can only say this.

When did I first experience the symptoms that came to dominate my life, nine days after the first infusion, and twice in the next three days. Every time I pointed out my symptoms to the nurses, they ignored me. As many doctors recognized laboratory abnormalities over the next few years, they viewed them as minor and insignificant.

Today, as far as we know, I am cancer-free. This, thankfully, meant that we hurt “other people” even worse. But because of that battle, I probably won’t be able to live my sunset years completely and unscathed.

For more cancer updates, research and education news, don’t forget to visit Subscribe to the CURE® newsletter here.