Taboo Cancer Topics

— Categories: Ependymoma Community     Posted on March 30, 2020

Ependymoma survivor, Matt, shares how to bring up taboo cancer topics with your doctor - prognosis, intimacy, embarrassing side effects, second opinions and disagreeing with the treatment plan.

 

By Matt C.

As an ependymoma survivor and guest blogger, Matt shares his advice to help others within the ependymoma community cope with their illness.


In a perfect world, we’d never need to talk about surgical side effects, disease prognosis, or end of life care. But this is reality, and if you’re reading this, then chances are you are all too familiar with these topics. How personal or private a subject is varies widely based on the individual.

Some reasons why you may not feel comfortable sharing with your doctor:

  • Your doctor is closer to a stranger than a confidante.
  • You don’t feel comfortable talking about your body or disease.
  • You feel like your physician is in a hurry and you don’t want to bother with “one more thing…”
  • You may be afraid of the answer you’ll get, so you don’t ask.

At this point, if you’re nodding your head in agreement, I’ve got news for you - if there’s anyone you should be bringing up sensitive subjects with, it’s your doctor. Sure, there are a lot of weighty things that should be discussed with family and those closest to you, but your treating physician is uniquely qualified to offer opinion, advice and factual data on the list of taboo topics that we avoid discussing.

I can’t conclusively tell you that discussing my prognosis or death would have made life easier, but I have no doubt that I should have talked about them more with my neurosurgeon. Similarly, I don’t know if mentioning intimacy issues that were a result of brain surgery would have been enough to save my marriage but starting the discussion couldn’t have hurt.

That’s the crux to this topic: where a discussion leads is not as important as starting it. The good news is that no matter where the discussion goes, it is almost always better than not having it.

Recognizing that a few hundred words from a brain tumor patient you don’t know is not enough to overcome our inherent tendency to avoid certain topics, let’s take a look at some of them individually. My hope in doing so is that you can find a way to comfortably start a conversation with your doctor.

Death

Everybody is going to die eventually, but society has erected so many walls around the topic that people avoid talking about it. For many, their reticence to talk about death stems from a fear of the unknown. A serious illness greatly muddies the already murky water.

It may be cliché to say a brain tumor is a matter of life and death, but that’s exactly what it is – life. Your life.

Information is a powerful tool and an informed patient is better equipped to play a role in the care they receive. Every brain tumor case is unique, but that should not stop us from asking questions about death.

And, no, a hospital waiver acknowledging that a small percentage in similar procedures resulted in death does not absolve doctors or patients from talking about such an important topic.

Strategy tip to start the conversation with your doctor: Blame others.

Example: “My family wants to know whether or not this tumor could kill me. What should I tell them?”

Intimacy

As humans, there are few things more natural than procreation, and while sexual intercourse is within the boundary of taboo topics, “intimacy” encompasses far more. Changes in physical contact (ex: kissing, holding hands), desire (ex: hormones), and sexual function (ex: erection, egg production) make this a topic with wide-ranging possibilities.

While most of us take intimacy for granted, it is important to note that we are, in fact, dealing with tumors located in the brain and/or spine. Not only can a tumor’s removal cause changes to common functions, but changes in basic coordination, mobility or physical functionality compound matters.

As an example, my original brain surgery severely compromised my swallowing function so much so that if I was not in an upright posture, my swallow was not powerful enough to clear my own saliva. Problematic as that may be, consider the challenge of being involved in an intimate setting, laying horizontally, and kissing – my swallow function simply couldn’t manage the task.

Strategy tip to start the conversation with your doctor: Use fertility concerns to broach the subject.

Example: “Will treatment affect my ability to have kids?”

Embarrassing Side Effects

Flatulence. Drooling. Skin conditions. Scars. Leaking bowels. Speech impediments. Hair loss. That list reads like a horror story for many folks, but those things, and more, are a harsh reality for brain and spine tumor patients.

It is important to note that side effects differ from patient to patient and can be loosely predicted based on a tumor’s location. The difference between short and long term (lasting) side effects can also be significant.

But the key matter for any patient is their expected outcome.

Strategy tip to start the conversation with your doctor: Use length of time as a gateway.

Example: “I understand there will be some unfortunate side effects from treatment while I’m still in the hospital. How quickly will they go away and which ones should I expect to be permanent?”

Prognosis

Prognosis is a fancy term used in the medical world that means the expected course for a disease or ailment. It’s human nature to want to know how the story ends. Truthfully, whether the ending of the story is happy or not is not as important as knowing the outcome.  

Many decisions about treatment are best made when they take into prognosis into account. The easiest example of that is weighing quality of life against the side effects of treatment. Better said, a patient diagnosed as terminally ill makes different decisions than one who is expected to live a full life after treatment.

Because brain and spine tumor treatments vary so much, trying to pin a doctor down on this subject can feel futile. Many doctors feel more confident to talk about a disease in general terms than they do about a patient’s case (which is a discussion for another day).

Strategy tip to start the conversation with your doctor: Acknowledge the difficulty of predicting outcomes.

Example: “I know every case is different, so let’s talk in general about the disease…”

Seeking a Second Opinion

This is simple. If your physician discourages you from getting a second opinion, then you need a new physician. Not only are second opinions common in the medical industry, it is prudent and expected to get one when dealing with a brain or spine tumor.

Strategy tip to start the conversation with your doctor: Make it personal for them.

Example: “If you were diagnosed with this, who would you see for treatment?”

Disagreeing with Your Treatment Plan

It can be uncomfortable not to agree with a physician’s plan. That discomfort can bloom into completely avoiding a subject, especially if questions aren’t voiced early-on in a discussion.

If you find yourself disagreeing with your doctor, the first thing to do is to acknowledge that he/she likely has a valid reason for anything recommended for your case. Additionally, after some introspection, oftentimes patients realize they have a personal reason for being uncomfortable with a recommendation.

With those things in mind, it is still important for patients to ask questions and understand the thinking behind a plan. If your physician is hostile about you disagreeing with something, then it’s time to take the advice and seek a second opinion and find a different doctor.

Strategy tip to start the conversation with your doctor: Start questions with the word “why”.

Example: “Why do you think that is best?” or “Why is it important to do things in that order?”

Remember, the goal is to start the conversation. However uncomfortable the topic is, the information gained from talking about it is better than avoiding the subject altogether.

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