Suffering is physical, emotional, and mental.
Having cancer is extremely stressful. If you’ve had cancer, you know this in your bones. If you haven’t, then while you suspect this is true, you don’t have a “feel” for how extensive it is.
It doesn’t matter what cancer treatments we had, none of them are easy, and they leave permanent marks on us physically, emotionally, and mentally — the nausea, the debilitating pain, the feeling of being torn inside. While many of the details will fade over time, the harder ones are tattooed on our skin and engraved in our minds. Sometimes flashbacks wake us up at night.
I sense a desire among those who’ve never had cancer to idealize, even romanticize it, if only to deflect its horror away from them— “Oh, you were so brave!” “You must have gained so much wisdom!” “There must have been something God wanted you to learn.” When we are struggling with cancer, or any life-threatening illness, there is no enchantment, no stars in our eyes, no namby-pamby in our pajambies. While afterwards we might be grateful for cancer because it clarified what’s important to do every day, and it probably taught us the importance of feeling compassion for anyone who is suffering, I don’t think that any of us would have choose to have cancer.
We don’t ever forget the trauma we go through. We are probably still dealing with some of the side effects that won’t go away. We also know that our cancer could come back, and this dampens our enthusiasm.
Having cancer shattered my understanding of self, of always being strong and in control. I also no longer view the world as a safe place because I know that people of all ages die every day, usually for no good or discernable reason. Cancer has rewritten my expectations. Sometimes I feel disoriented because what I once trusted to keep me safe, didn’t keep me from getting cancer, whether this was the medical system, society not wanting to ruffle the happy waters of ignorance, or political leaders who took bribes (donations) and sold off quality health care to increase business profits.
I’ve begun reading a new book that explores the trauma that goes on in religious organizations. Edited by Mari Ramler and Victoria Houser, Purity Culture, Bodies, and Beliefs is a sobering collection of accounts by people who have suffered in the church, often because of institutionalized patriarchy. I’m not going to review the book, but it made me think about the trauma that goes on with cancer, some is inadvertent, some is systemic, and some is intentional, and all the compassion of nurses can’t overcome this.
Paternalism among doctors used to be a major problem (top down medicine). Doctors simply told us what treatments we were going to have. It’s less common today as many doctors have learned that listening to what their patients share is a valuable resource for making the correct diagnosis and deciding on the right treatment. Still, male doctors aren’t always good, or comfortable, at listening to patients, especially when emotions are involved. (Is there a class on empathy or listening in med school?) This is one reason why I go to female doctors when I have a choice. They are better at listening and I feel more empathy coming from them.
Medicine should be about tending to the health of the entire person, not just the physical body. In this age of corporate medicine and fifteen-minute appointments, doctors don’t have time to explain everything to patients, and they don’t think they have the time to listen to patients try to describe their symptoms in non-medical terms. They should.
Doctors tend to start treatments based on what has worked for their patients in the past. Yet everyone’s body is different, and genetic tests are showing that our genetic makeup needs to be taken into account when deciding what treatment to use. This is especially true with breast cancers.
As patients, we need to share what we value about life with our doctors because this should be part of our treatment plan. Say you’re a man in his late 70s with prostate cancer, and the anti-hormone drug leuprolide is causing hot flashes that prevent you from sleeping and leaves you physically exhausted all day. After radiation is done, you may want to stop using the drug. You are miserable and you know that the drug doesn’t kill any cancer; it just keeps whatever cancer cells remain tamped down. While the standard length of time for this drug treatment is two years, you may decide that your quality of life is suffering so much that you are going to stop after one year. And that’s your call, not the doctor’s.
While I haven’t read any discussions about cancer causing PTSD, I bet they exist, and I think they are legitimate. Here are some of the symptoms of having PTSD. See if any of your cancer symptoms match up. For example, do you:
have feelings of depression, anger, anxiety, grief, or lethargy?
have nightmares of going through chemotherapy again?
feel isolated because your support community of family and friends no longer want to talk about your cancer?
have negative beliefs about yourself, others, and the fate of the world?
Are you unable to think clearly or make decisions?
Are you no longer are interested in the activities you used to love?
PTSD is a clinical diagnosis, of course, but if you have some of the symptoms listed, consider talking about your concerns in a cancer support group or with a counselor at your cancer center. Sometimes we just need to talk to someone who can put our thoughts into context so that we don’t end up worrying about our worries, which isn’t a double negative that makes a positive. It really is a negative and a negative.
I think that everyone should talk to a cancer counselor at least once right after they are told they have cancer just to sort through expectations and reality, because otherwise your mind begins extrapolating minor details into the horror of everything that could go wrong. The reality is that few of them will. It helps to have someone put our feet back on solid ground.
In the week before your next scan or blood test, does your anxiety increase as you worry about what it will find? Everyone in my cancer support group does. We call this reaction scan-xiety. In a few weeks, I will have my one of my first six-month check-ups, and I’m already feeling restless about what my blood test will reveal about my PSA number. Is my cancer still under control and I’m good for another six months, or will I need to restart treatments? I am trying hard not to think about this.
© 2026 Mark Liebenow
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