Coping with Cancer / Social Work
LeahMSW
Recently one of our readers wrote about her “scanxiety”, the anxiety and fear she feel whenever it is time to have another scan that has the potential to show growth or progression of her disease process. There is not a cancer patient I know of who has not suffered this kind of emotional distress at least once, and usually more often, when such a test is looming. It may be difficult to talk about this fear with loved ones, since most of the time they are either as scared and anxious as the patient is, or maybe in blissful denial, certain that things are going well for the patient. This is certainly a topic that comes up with some regularity in support groups, and there a variety of helpful hints that may emerge from the discussion.
First, recognize that the timing of the scan or test is important. If this is the first scan since the beginning of chemo, some 3-6 months away, the anxiety can be almost overwhelming. However, the first scan often shows some improvement, some shrinkage of the tumor. The first treatments, whether with radiation or chemotherapy or whatever, often has the greatest potential for a response. That‘s why we use the best treatment for the particular type of cancer first, assuming that we have already determined a “gold standard” treatment.
If this is a repeat test and the prior ones have continued to show response to the treatment, a person can feel relatively confident that this scan will show a good result as well. Of course, there is always a point that may come when a scan report may show that the treatment has stopped slowing the growth of the cancer, and there may be a small amount of progression of the disease. The most difficult thing for a person to handle is the uncertainty that comes when ever we test to see how well any treatment is working. Generally speaking, patients can go into a pattern of circular, almost obsessive thinking about what the scan results will be. This sort of thinking process creates even more anxiety as the thoughts keep recurring and we are unable to prevent them from taking over.
This is when I find it helpful to ask a patient two questions. The first one is, “Do you believe you can do anything about whatever the scan results will show?”. The second one is, “What do you believe is the worst possible thing that can happen to you if the scan results are less than positive?”. Almost to a person, patients will answer that they do they not believe they have any control over the test results! Again, nearly every patient will answer that the worst possible thing that can happen to them if the scan results are negative is that they will die! This is patently incorrect! Commonly, the worst thing that will happen is that the treatment will change; the physician will change chemotherapy drugs, or add a different drug or switch to a targeted drug in addition to what has already been tried, but very often, something new will be added to the chemo protocol. If you are a patient whose cancer has not been a good responder in the past, and you have already tried several different chemo protocols, the decision about what to try next may be a bit more problematic, but it still does not mean that there may be nothing left to try. Every year there are new drugs being added to the existing arsenal we have to treat every cancer. And even though a patient may not have responded well in the past, and there are statistics that show that each new drug has a worse chance of being successful than the preceding drugs, we sometimes we get a pleasant surprise. For any particular patient, the new protocol may be just the right one, providing a nice response.
So here we have a situation of such overwhelming anxiety and fear that patients are unable to control all of these negative thoughts and replace them with more helpful thoughts that would allow for better coping when frequent tests and scans are always in the future plans. To return to the first question, I often employ a coping mechanism I learned many years ago. First, I make certain that there really is nothing I can do to help myself in this situation, and allow me to feel more in control. Sometimes that means asking the physician for a small number of anti-anxiety medications, like 10-20 Lorazepam or Xanax. What is interesting is that most of the time I don’t even take them, but just knowing I have them if I need them is very helpful, and if sleep would otherwise be disturbed because of the anxiety, they may really help. Prayer or meditation is also very useful when these recurring thoughts keep coming, but sometimes they are so disruptive that you can’t really concentrate on keeping your mind focused enough to do that. The most helpful thing to me is that if I have looked at all of the activities that might be helpful and discarded them for one reason or another, and I know for sure that I have done the best I can do, but the anxiety is still terrible, there is only one thing left to do, and that is to let go of the fear and anxiety. Telling yourself to let go is to recognize and acknowledge our own helplessness in this circumstance. I know this is not easy to do, especially for people who need to be in control, but unfortunately it is a reality of the cancer experience. I doubt there is a physician around who would really tell any patient that they are in control of this disease; everyone is doing the best they can with the tools that are available to work with.
So, spending endless hours in circular thinking and high anxiety is to rob yourself of the most precious commodity we have; time! We talk a lot in cancer treatment about staying in the moment and living each moment, and the folks who are successful in practicing mindfulness on a daily basis are those who do actually recognize their own limits and work to overcome the irrational fears and anxieties. They ask themselves the questions that will help them to come to the best conclusion for themselves and work hard at truly living in the moment! These sleepless nights and worried daytime hours are robbing you of precious time to spend with family and friends. Keep telling yourself it isn’t worth it and work on all of the positive things in your life. Those scans and test reports will be what they are going to be no matter what you do. So please, work on making the changes you need to do: you will be so glad you did!
Please let me hear your comments.
Leah
Posted in: Coping and Social Stressors with Cancer, Social Work/Coping with CancerThanks, Leah. This is all good advice, particularly your discussion of worst case scenarios often just mean that the oncologist will change your treatment to something else (a different chemo line, or addition of another chemo agent).
One thing that we try to focus on when we go to appointments (my husband has NSCLC), is that even a somewhat negative scan often reveals something positive (what we think of as a “mixed bag”). Also, we try to focus on how my husband is feeling and not get too caught up in what the scan will show. If there have been some improvements in breathing, appetite, weight gain, mobility, appearance, etc…, then just how bad will the scan be? Going into an appointment, we try to remember to hear the good along with the bad. And yes, so far, our attitude is that, nothing we think ahead of the appointment will change the results of the scan, so there’s not much point in worrying about it — and if there are too many negatives, it just means it will be time to move on to another line of treatment (hopefully one with less side effects and/or a less demanding treatment schedule — all reasons to celebrate!).
bev
First, thank you for acknowledging what so many of us are going through,emotionally, with each scan. It really helps to know that our providers are actually aware of how stressful each test can be. I am now between scans…the last 2 have been wonderful. But still I wonder while I wait for the next one (in August) what the future will bring. Do I know that this worrying is totally futile? You bet I do. And I know there is nothing I can do about it. Doesn’t stop me from worrying. Fortunatley I have been able to stop my lexapro and xanax in the last couple of months. I just keep busy, and do my best to just ” not think about it”. I figure my family and friends know and understand and don’t want to really keep hearing about my worries, and I find, in this case, that making myself not talk about it, is actually therapeutic for me. Sometimes the more I talk about it, the bigger it gets, the more significance it seems to have in my life. So my philosophy, at least where “scanxiety” is concerned , is ” Ignore it, it will go away”. Believe it or not, in some small way, it helps.
Terryl
Hi Leah,
Thanks for writing about this. I am 2 years post surgery/chemo and still have anxiety about 2 weeks prior to a CTscan. I have found my family, including my spouse, don’t want to hear about my anxiety so I keep it to myself. In fact, the last CTscan I had, I didn’t tell my sisters until after it was over because I know they worry alot about me too.
I try to find things to keep me occupied pre-Ctscan time. I love to read, scrapbooking, and do art work. This helps lessen the tension for me.
Bette
Bette_Tx
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