Some of the reasons that we feel uncertainty when diagnosed with cancer and how doctors communicate uncertainty.
In my last post I explained briefly a small part of cancer biology which is that specific cancers have unique genes that are critical to determining response to various therapies. We should keep this in mind when our doctors tell us that they are “trying” a therapy. A family member recently shared with me that every time the doctor said that they were going to “try” a medicine, he felt like he was being experimented on. He feared being “experimented” on and did not want “experimental” therapy. As an oncologist, I recognize that sometimes we fail to explain what “trying” a therapy means and that without explaining this properly our treatment recommendations can sound experimental. I want to explain what it means to “try” a particular therapy opposed to participating in a clinical trial. (That being said, I think there are also misconceptions on what it means to participate in a cancer trial which I will need to expand on in a future post.) But I believe that in the case of my family member the oncologist choose the word “try” because of inherent uncertainty of his cancer responding to treatment due to limitations of what we can test. She was not “trying” or “experimenting” with a new medication or one for which responses had not been seen with his type of cancer; she was simply unable to predict if his cancer would respond. She may be able to predict response for a 100 patients, but not for just one. For some tumors there are certain genes that can be tested and increase predictability. But many times the best test is to give the chemotherapy and monitor for a response. To summarize, “trying” a specific chemotherapy typically means that we are giving a medicine that we know has the potential to be effective and then confirming the degree of effectiveness in a single case.
This uncertainty that is often a part of cancer therapy is particularly challenging to deal with both medically for physicians and scientists, and mentally for patient and their families. Although uncertainty can be found in other fields of medicine, its pervasiveness in oncology is a distinguishing characteristic. Above I discussed in detail how doctors deal with the uncertainty in terms of developing a medical treatment plan, and how they constantly need to monitor patients for response and make alterations accordingly to determine the long course towards cure. There is a certain relief in going to the doctor for most routine illnesses. Being diagnosed with cancer is so very different from being diagnosed with an infection, which we know can be cured with a specific antibiotic course; you just take a 14 day treatment and you’re better. For us, that immediate relief is not there. We cancer patients have to deal with a recurring mental cliffhanger that involves waiting on scan results which are very stressful. So now I want to move ahead and discuss methodologies that patients can use for dealing with the stress of uncertainty.
Methodologies for dealing with mental stress of uncertainty.
For 4 years I have been getting routine scans. Each and every scan is still stressful. It was most stressful early in therapy when I was waiting to hear my initial response a cycle of chemotherapy. With this blog entry I want to share how I used positivity to deal with some of this uncertainty. I cannot just say think positive because I find that much too vague in this particular situation. Instead I will share with you how I thought positively in the hope that it may inspire your own method. In my previous post I shared ways that I made myself feel good during treatment which was an important part of feeling positive. (http://chemotherapycheerleader.com/boot-camp-cocoa-butter-and-girly-stickers-coping-tips-for-patients-new-to-cancer-therapy/). Today, I want to share how visualization was a technique that I used to stay mentally focused on my cure, to manage the stressful times, and to maintain a positive outlook on my survival. None of this is easy, and I often said during treatment that being dedicated to treatment and staying positive is a full time job for a patient. It requires work! I am unsure if it was just the mental calming that comes from such positive visualizing techniques or if it is something that cannot be explained, but either way I found these visualizations to be a powerful tool during my therapy. I am uncertain what drew me to these techniques, but for me visualization and some superstitious routines were what I developed to deal better with stressful occasions. I do not think you need to do what I did, but it is probably worth just looking inward and discovering what techniques you wish to focus on; prayer or meditation are other powerful common techniques that people use.
As foolish as it may sound coming from a doctor, I am superstitious. During my cancer treatment, my superstition was to always be wearing my lucky cat pendant for which I enclosed a note of promises on self growth that I would commit too. Right before starting treatment, immediately following my diagnosis, I went on my planned trip to Hawaii. There one can find many lucky cats in restaurants. This trip inspired my adoption of the lucky cat symbol as my personal mascot. I collected lucky cats during my treatment to bring myself luck. My friends embraced my lucky cat obsession, and it was a way for them to show their support. They actually dedicated a Christmas tree to me in the theatre district of Houston, which they decorated with over 30 lucky cats, as well as pictures of our gang. Even my “Team Jess” bracelets were adorned with this symbol.
As for my visualizations, they were both focused on the physical destruction of my tumors as well as happy events to occur in my future. I may be a physician scientist who has studied cancer biology for many years but that did not prevent me from benefiting from these techniques. It may not be for everyone, but I wanted to share this personal part of my story with our community. As an oncologist treating patients, my focus is on chemotherapy and medical therapies. These alternative mental techniques are more personal. I am sharing them because they were part of what I did as a patient to cope with this overwhelming even.
Because alternative therapies have a broader definition to some, I do want to caution about alternative therapies such as extreme diet, taking “natural” supplements, or taking treatment proscribed by those not licensed to practice medicine. Many of these I am more wary of because such therapies can interfere with chemotherapy (for example, there are vitamins that can inhibit the effectiveness of specific chemotherapy agents). If you are trying such alternative techniques then I encourage you to discuss in detail with your physician. Since timing of cycles is also very important and anything that will delay chemotherapy or change the timing that you’re available for treatments should be discussed in-depth with your physician.
The techniques that I am discussing here are limited to how I focused my mind when I was in a quiet room, alone in the hospital as an inpatient or waiting on a test. When I was alone and awake in the hospital, or just in a time that was more stressful, I would close my eyes and visualize. Below is part of update that I wrote to family and friends on my Facebook page while I was in the hospital for chemotherapy. It illustrates some of my visualizations:
“This might surprise you since I am both a pediatric oncologist and physician scientist, but I use superstition (lucky cats!) and visualizations as part of my getting cured from this dreaded ACC.
A typical time for me to visualize is during my PET scans, the time after between when I am injected with a radioactive tracer till the time that the images are taken. My friends who are part of team Jess have been such an integral part of my treatment that I often see them as physically beating down and destroying my cancer.
I envision Jane and Vita in high heels trampling my tumor. My parents were also there at work …my father delivering some hard blows as he is pretty strong for and 80 year old…..
….I pictured my college friends forming a tight circle around my largest liver met and squeezing. My boss used her beautiful high frequency operatic voice to help melt this mass… “
You get the picture. This was just a small excerpt of a very long post of a silly story (it got much more silly, but to understand one must know my friends) of the different ways that I saw my friends destroying my tumor. It was this amusing imaginary in my head that got me through tough scan days with a laugh, smile and positive attitude. Not all my imagery was always so silly. I had clear thoughts about my future self. Other times thoughts were really as simple assigning colors in my mind to each organ and to the cancer and visualizing the organs with their colors without tumor.
Fortunately, the post that I quoted above ended with an incredibly positive note:
“Then they rolled me into the scanner, and against all odds the results were amazing. Another 50% reduction in tumor!!!!! These results that I am getting are extraordinary!”
I realize today’s post was an alternative topic but one that I wanted to share. Later this week I will address what some will consider more practical. Likely different strategies for dealing with the GI side effects of chemotherapy.
Sending you strength and love!