Attitudes, Emotions, and Reality in Choosing a Clinical Trial
Having cancer is a medical reality. Thinking about cancer can have a significant emotional impact on you, your family, and your friends. The process of coming to terms with your diagnosis, maintaining your life as normally as possible, and then looking at clinical trials can be emotionally difficult.
First of all, not many people actually believe they will ever be diagnosed with cancer. We all know other people who have cancer, but in our mind it just couldn’t happen to us. That’s just human nature. But, unfortunately, it can happen to us. The facts say about half of us will get diagnosed with cancer in our lifetime—some of us more than once.
Survivor!
Most of us probably fit into the category cancer survivor, and we have gone through a lot of emotional ups and downs already. Being diagnosed with cancer can be a traumatic experience. You already know all about that. Calling yourself a survivor has a certain determined, optimistic sound to it. That’s a good place to start.
Some people feel so discouraged after a cancer diagnosis they can’t really focus on anything else‑‑at least for a while. It’s normal to initially feel depressed and anxious, “I’ve got incurable cancer and I’m going to die!” That’s a horrible feeling regardless of whether it’s true or not.
Whatever you feel is very real to you. Your feelings may not be logical, rational, or reflect reality (that’s why they’re called feelingsand not facts) but they have a major impact on what you think, how you act, and what you decide to do or not to do. That includes choosing to join (or not to join) a clinical trial.
According to the National Cancer Institute, about half of those with incurable cancer experience some serious emotional distress and anxiety. People with cancer can experience PTSD (post-traumatic stress disorder), just the same as accident victims or soldiers in combat. Cancer survivors commonly experience fatigue which can make it more difficult to make decisions and take actions that might benefit you. As if the cancer itself wasn’t bad enough!
“Just leave me alone!”
Whatever you’re feeling is probably shared by many others with cancer. It’s common to want to be alone and avoid the sympathy and concern of others, even your family and closest friends. Isolation might seem to help, but more likely being alone will increase your stress. You can feel sad, happy, angry, and discouraged‑‑all at the same time. This emotional roller coaster can keep you from getting the help and support you need and from making important decisions. Try not to let that happen; tell yourself that you’re in control and then take charge!
The American Cancer Society (ACS) suggests some things you can do to help manage worry and stress:
1 Just talking about your feelings can help relieve worry and stress. 2 Trying to relax with deep breathing and other techniques can be helpful. Doing it regularly works best.
3 Allowing yourself to feel sad and frustrated without feeling guilty about it is perfectly OK and you have every right to do so.
4 Choosing the right person to talk with can be important. That person could be a good friend, family member, or a spiritual counselor.
5 Spiritual help is useful for many people.
6 If the worry persists or gets worse, get help from a mental health professional.
And you want me to join a clinical trial on top of all that?
In the middle of the emotional roller-coaster and facing a relapse or progression of your cancer, you’re now considering experimental medicine‑‑a clinical trial. It can be hard to make calm, logical decisions when you are in the midst of a personal crisis. To top it all off, the information you’ve been hearing from others may not be completely accurate or very helpful.
Human Nature
Good old human nature can trip you up on the way to considering a clinical trial. There is a strong tendency for some (probably many) people, when under stress or in crisis (being diagnosed with cancer, for example), to resist any change or new treatment that takes them out of their own comfort zone. Just a few thoughts that might come up:
“I don’t have the time” “It’s just a waste of my time.”
“What’s the use?”
“I know it won’t work.”
“What do those doctors and drug companies know?”
“They just want to use me to make lots of money for them!”
“There’s no way I’m going to be somebody’s guinea pig!”
· “And what about those stories of clinical trials gone wrong?”
Your Choice
Most clinical trial participants report a good experience—but not necessarily a cure. Spending time with the medical professionals and sometimes with other participants can be good for your mind and body. And you can always choose to opt out.
To put a smile on your face see Larry's latest cartoon.
To learn more about clinical trials, take a look at our book.
(c) 2012 Tom Beer and Larry Axmaker