“Exhortations to think positively – to see the glass half full, even when it lies shattered on the floor – are not restricted to the pink ribbon culture.” –Barbara Ehrenreich, writing in The Guardian, Jan. 1, 2010.
Most everyone admires a positive attitude. Especially in circumstances where the outcome is in doubt. A diagnosis of cancer brings this doubt into very sharp focus, and combined with the well-known difficulties of treatment, many are apt to ascribe toughness, a fighting spirit, and general mental strength to a cancer patient they meet or know. This may be especially true in cases where the person with cancer is really just trying to survive.
Nurses in the cancer clinic are a part of the culture which cheers striving and a positive attitude. Not only do they cheer on any perceived positive attitude, they underline it. It’s happened to me many times.
When I was first diagnosed with pancreatic cancer (adeno-carcinoma, not the kind Steve Jobs had), my doctor reluctantly gave me the statistics. Most people with this diagnosis die within 12 to 18 months. Only about 5% last more than a few years.
After my first round of chemo with radiation, I was given a breather from treatment. It was becoming Spring then, and I took to gardening as much as I could, since I had a goal.
Every year for the past 20 years I had hosted a May Day party, meant to glory in the beauty of spring flowers, to celebrate the re-growth of the earth, and to just enjoy fresh outdoor partying with good friends and like-minded people. Besides a Maypole and flower-crowns, I’d always included lots of good English-style food, like trifle, lemon curd tarts, strawberries, and May-wine.
My goal: it was likely to be my last chance to celebrate Spring, and I wanted to host this party as a sort of thank-you to all the amazing people who had given me encouragement and support over the previous 6 months. A large number of these people were medical people, since I had worked for many years at a large university hospital, most recently in the Medical Intensive Care Unit. During the party, I had nearly everyone tell me how well I was doing and how great my attitude was. “Keep it up” was a frequent comment, along with variations on “your great attitude will get you through this.”
So. I’ve gone for 2 years and 6 months since my symptoms started, and people still tell me that attitude so important. But is it really? I’m sure all of us struggle at times, maybe even all the time, with negative feelings, dealing with setbacks, the pain, and the wretchedness of having our bodies poisoned by chemicals that are designed to attack fast-cell growth –-such as tumors, and the absolute drain of energy this can cause. That’s not to mention all the problems many have with the financial burden, the problems with trying to keep working, and more . . .
I’ve looked at several studies to find out whether there is more than anecdotal evidence (individual stories, usually) to support the idea that a positive attitude is important to cancer survival.
A number of sites touted the importance of a positive attitude. They generally wanted to push the importance of keeping your hopes up, as if you need to beat your cancer psychologically by always knowing you can overcome it --that your input is important to maintain your treatment at its best. But guess what? None of these articles had any links to studies with statistics showing there was a verifiable connection between thinking you would beat your cancer and actually living longer because of it. So I looked for studies that had such connections and which had been published in established, peer-reviewed journals.
Women with early-stage breast cancer were evaluated for levels of depression, anxiety, and mental adjustment to their diagnosis in a study conducted in England at the Royal Marsden Hospital in Surrey. Of the 578 women who were evaluated shortly after diagnosis and again one year later, 395 of the women made it 5 years without a relapse. Researchers determined that a helpless/hopeless mindset did not change survival times. But they said that it did make a difference in whether or not particular patients had difficulties during treatment and whether they had a better quality of life during that time. (This study, under Dr. Maggie Watson, was published in the British medical journal The Lancet, 1999; 354:1331-1336)
This study was done by Australian researchers and published in the March 15, 2004 issue of Cancer, published by the American Cancer Society. The researchers tracked sub-group of lung cancer patients who statistically had a 15% survival rate over 5 years. Over the course of the study, 171 out of 179 patients enrolled had died.
Conclusion by the researchers: patients with a positive attitude fared no better than their less-upbeat peers. This led the researchers to suggest that doctors who encourage cancer patients to remain hopeful about their life-expectancy may be doing more harm than good. Others, reviewing the research, had this to say: Attitude is important to help the patient take better care of themselves, but it cannot overcome the underlying process of the disease. (Herman Eyre, MD, chief medical officer of the American Cancer Society)
One doctor went further. Jimmie Holland, MD, a psychiatrist at Memorial Sloan-Kettering Cancer Center, said, “there is an expectation on cancer patients that they need to be positive or their tumor will grow faster -- and that's just nuts.” She went on to caution that expectations that a positive attitude is needed can create “the tyranny of positive thinking.” In some cases, such a viewpoint can give patients an unrealistic expectation of prolonged survival. Other patients may blame themselves if they are not doing well, thinking that if only they could be upbeat and believe, they could conquer the cancer. "Encouraging patients to be positive may represent just an additional burden," wrote these researchers.
Bottom line: don’t force yourself to conform to a upbeat attitude. It won’t affect the disease process. If you are down and depressed by your diagnosis or by your treatment, don’t worry that not thinking positively will shorten your survival.
Another study involved 1,093 patients at the University of Pennsylvania, who were all being treated for head and neck cancers. The study team, lead by Dr. James Coyne, a behavioral psychologist, concluded that there was no scientific basis for thinking that a patient’s positive emotional state was a factor in cancer outcomes. Dr. Coyne added, “I wish it were true . . . but given that it is not, I think we should stop blaming the patient." This study was published in the ACS journal Cancer, Dec. 1, 2007.
A research group at the same institution, including Dr. Coyne, reviewed a group of similar studies. They concluded that there was no evidence that being involved in psychotherapy, counseling, or that participating in a cancer support group affected survival rates.
On the other hand, they did note that patients who join support groups or get counseling may gain emotional benefits and are likely to be able to handle the stresses of the disease and of treatment better. They are also likely to improve their quality of life.
My conclusion from reading this information is that an upbeat attitude does play an important role. Not in cancer survival, but in dealing with cancer. A better attitude can help reduce problems when dealing with treatment and other issues, which are often difficult for many cancer patients.
A positive attitude can help you to cope better. It can motivate you to take better care of yourself. Note that those who are optimistic are more likely to eat well, to change bad habits (like smoking), and to keep up activity levels. All these things can help cancer patients to cope better and to feel better, even if better is still not great.
Though I don't expect this diary to be a great solace to anyone, I hope it gives you permission to live with your cancer as you can, emotional challenges and all. Seek comfort and help to deal with your situation from others, including this group, which has a lot to give.
And always remember to give love as well as receive it. Life is too short to suppress love.
Monday Night Cancer Club is a Daily Kos group focused on dealing with cancer, primarily for cancer survivors and caregivers, though clinicians, researchers, and others with a special interest are also welcome. Volunteer diarists post Monday evenings between 7-8 PM ET on topics related to living with cancer, which is very broadly defined to include physical, spiritual, emotional and cognitive aspects. Mindful of the controversies endemic to cancer prevention and treatment, we ask that both diarists and commenters keep an open mind regarding strategies for surviving cancer, whether based in traditional, Eastern, Western, allopathic or other medical practices. This is a club no one wants to join, in truth, and compassion will help us make it through the challenge together.