Living With Canceris published by theCancer CenteratBeth Israel Deaconess Medical Center, a Harvard Medical School teaching hospital.
Anxiety comes in many flavors and is known by many names: worry, distress, fear, even panic. Thinking specifically about cancer-related anxiety, there is even a special term for specific circumstances: scanxiety. This, of course, refers to the intense feelings about scans, MRIs, blood work or other tests that might indicate a return or progression of cancer.
For most people, this is not something that gets easier with practice. It generally matters not a whit that we have had half a dozen previous scans that were fine. Rather than being reassured, we think “Maybe this time my luck has run out.” If recent scans have been worrisome, it is easy to assume that this next one will be even worse. Thinking positively or even hopefully can be tough.
It is tempting to put our heads in the sand and try to ignore the whole thing, but that is usually not a smart strategy. I have known a few people over the years with the great gift of being able to contain their anxiety within the real time of the experience and then completely seal it off. Most of us can’t do that. We can, however, consider strategies to better cope with scanxiety.
Remind yourself that these feelings are normal. It would be impossible to be living with cancer or worries about cancer and not be afraid that scans or other tests are going to confirm your worst imaginings.
As simple as it sounds, remember that what is, is. This means that the tests are going to show whatever is there or not there, and your fears or sadness or behaviors are not going to influence the results. If it is at all possible for you, this is the moment to practice being Zen, or living in the moment*.*
Think carefully about the day. Are you better off going alone or having someone with you? If the latter, think about who would be the best company during a difficult few hours.
If someone else is driving, you could consider taking an Ativan or something else to reduce your anxiety. Just don’t do so and then get behind the wheel!
If you are likely to be untroubled by physical aftereffects of the process (meaning you won’t be ill because you had to drink a gallon of contrast before a scan or something similar), consider planning a treat for yourself. Go out to lunch with your friend or stop by a sale on the way home.
The most important part of the plan is knowing how and when you will hear the results. The worst scenario is not to have discussed this with your doctor, so that you don’t know if someone will call and what that call or no call might mean. It is all too easy to fall down the rabbit hole of “No one is calling because the news is good and I can wait to hear it.” Or, “No one is calling because the news is bad, and they don’t want to tell me over the phone.” Talk with your doctor about this and be clear about how you will learn the results. Some people want a call as soon as possible, and others are happier to wait for their next appointment when they can talk in person.
If your hospital has something like Patient Site or Patient Gateway--a way to read your records online—stay off it until you have talked with your doctor (see #6). The absolute worst way to learn bad news is alone, in front of your computer screen.
Be gentle with yourself and know that you will get through this. This, too, will pass.
Tell us how you cope with the anxiety of cancer testing in the BIDMC Cancer Community.
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Cancer and Sex
How has cancer affected intimacy in your life?
As we all know, a cancer diagnosis and treatment have never enhanced anyone’s sex life. In all my years in the business, I have never heard anyone say anything remotely like: "Boy, my sex life has gotten so much better since cancer." Instead, I hear the opposite, over and over and over again. People are discouraged and unhappy that their libidos are compromised (often totally absent), that their bodies don't respond in familiar ways, that they are hampered by their physical changes and, most of all, by their mood and thoughts.
I am especially thinking about this as I am giving a talk on sexuality and cancer tomorrow evening. It is both easy and difficult to prepare for such a presentation. The easy part is that everyone is relieved and delighted to have a chance to talk about this often taboo topic. The hard part is that there really aren’t any easy cures, actually no cures at all. There are suggestions and strategies and, perhaps most importantly, the chance to normalize the feelings. Last week I met with a gay couple, one of whom has cancer, and he hesitantly began to speak of his diminished libido. His partner admitted to the same issue, and they were both enormously relieved to hear me say that this is, sadly, completely normal. That comment didn’t fix it, but it took away their shame and worry and guilt.
Although no one has any wonderful recommendations, at least the topic is finally starting to get the attention it deserves. When someone is recently diagnosed or in active treatment, sexuality is usually (though not always) towards the bottom of the worry list. I can think of only one person, over many years, whose most important concern about her cancer treatment was that it would diminish her libido and responsiveness. Even more surprisingly, she was in her 70s. Once time passes, however, and life has returned to what now is normal, people are often distressed by the negative changes in their intimate relationships.
Most people never have the sex talk with their oncologist. There is so much to discuss with your doctor, and time is always limited and sex can be an uncomfortable topic to discuss. This translates into silence on the subject. On the rare occasions that a patient brought up the topic, my doctor colleagues usually immediately referred her to me. Some studies have indicated that fewer than half of cancer patients speak to any healthcare provider about intimacy.
Men, it seems, get the "sex talk" a lot more frequently than women do, but this statistic is dominated by prostate cancer patients and their doctors. Since treatment for prostate cancer may result in impotence, it must be discussed as a real risk of both surgery and radiation. I don’t know how often the discussion goes on to include alternative ways to be intimate and even to explore the mens’ feelings about this major loss. I suspect that answer is not often. As an aside, a patient once confided in me that her husband had become a much better partner since his prostate cancer surgery. Unable to proceed in the usual way, he had learned alternative moves and slower timing.
If you would like to try to have this conversation with your doctor, bring it up. You can say something like: “My body has changed in a lot of ways, and one has been sexually. I don’t have much of a libido, and I miss it.” If your doctor is unhelpful, ask her if she can suggest someone with whom you can speak about this topic.
Sexuality is an important part of life. Relationships naturally change over time, but most people and most couples want to continue to be close. The most important suggestion, as always, is communication. If you can’t talk about the issue, it is going to be really hard to fix. I reassure all my patients that changed bodies and responses are normal, and that their partners, too, have been thinking about this. There are many non-sexual ways to be close, and that can be a safe and more comfortable place to start.
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Communicating with Your Cancer Team
Much has been written about managing communication with your health care team. This is always a concern but after a cancer diagnosis, it feels even more important. In addition to trusting in your doctors’ competence, you need to feel that the personal relationship is working.
The focus is usually on interactions with your doctors, but there can be similar challenges in connecting with others who are important in your care. Your cancer care team likely has a number of members: doctors, nurses, an oncology social worker, maybe a dietician or a physical therapist. You may not be aware that there is a great deal in the medical literature about communication. Doctors worry about this issue, too. It is important to remember that all of these relationships go both ways, and it is safe to assume that your doctor is also invested in a satisfying bond. The catch is that you may define “satisfying” differently.
In my role as an oncology social worker, I often talk with patients who are unhappy about their connections and their conversations with their doctors. They may feel misunderstood or disrespected, but the most common problem is feeling rushed during appointments. Other common concerns include not understanding what is being presented, worrying that something important is being withheld, feeling overwhelmed by information, feeling that the doctor is emotionally insensitive, being frustrated with the systems or routines of the office, and, sometimes, just bad chemistry.
If, after trying the strategies below, you continue to feel unhappy with this important part of your care, it might be time to consider a second opinion. The BIDMC Cancer Center has specialists in all kinds of cancers and welcomes anyone for a thoughtful consultation. If you live in other parts of the country, there are many fine cancer centers to consider.
It is easy to for me to remind you that you are the consumer, and that you are hiring your doctor. It is not so easy for you to feel that way. The realities of health care may mean that you have limited choices in selecting a hospital or physician that will be covered by your insurance. The balance of power is inevitably very much on the doctor’s side, and it is hard to feel empowered and entitled when you are undressed and scared. Here are some strategies that may help you connect and manage this important relationship.
Prepare for appointments and for phone calls. Make a written list of your questions and start with the most important ones. Recognize that your doctor likely does not have time to go through three pages of questions at every meeting, so prioritize and organize.
Take someone with you to every important appointment. The extra eyes, ears and memory will be helpful, and it may be useful, too, to hear how someone else experiences your doctor’s words and style.
Ask early on what is the best way to reach your doctor between appointments. Will she respond to emails? Will she herself or a nurse or fellow return most calls? If you are a Beth Israel Deaconess Cancer Center patient, is Patient Site—our secure, free email platform--an option? Don’t call with minor questions that can wait. Being respectful of your doctor’s time will make her more respectful of yours.
Tell her a little about yourself. Force some normal social interaction. Your doctor should know that your daughter is being married next summer, and that your primary goal is to dance at her wedding … or that your finances are very tight and you are worried about high medical expenses. Having information about your life will help your doctor relate to you as a “real person.”
Let your doctor know what your priorities are and remind her as necessary. For example, one of my patients frequently repeats her goals: to minimize the difficulties for her family, to minimize her own emotional and physical pain, and to make memories. This clarity helps everyone.
Finally, remember always that you and your sense of security with your care are most important. If you don’t like, respect and trust your doctor, find another one. No matter how daunting that may seem, it is well worth the effort.
Do you have tips or stories to share about communicating with your care team? Join the conversation in the BIDMC Cancer Community.
Cancer Risk and Organic Food
For a long time, many of us have wondered about the wisdom of paying the extra cost for organic food, especially organic produce. Common sense suggests that it can’t be good for us to ingest the pesticides and other chemicals that are routinely used in agriculture, and the direction to wash fruit and vegetables under running water always seems a bit lame. Can the cold-water bath really take off whatever is stubbornly on the peel or skin? Honestly, I know that I am never going to bother to scrub every vegetable, let alone to purchase and use a product that is advertised as ridding our produce of unwanted sprays.
It also seems important to note that this question is truly a problem of privilege. Many people struggle to afford the grocery bill, and it is unfair to criticize them for choosing less expensive apples. Actually, fresh fruits and vegetables are almost always more expensive than the canned or frozen versions, and we are fortunate if we are able to buy whichever we want. We are even more fortunate if we make choices that include consideration of seasonal and local and organic.
When we receive a cancer diagnosis, almost all of us look carefully at our lifestyle choices and wonder if our diets have contributed to our situation. In spite of claims to the contrary, there is no such thing as a particular diet or food that prevents or cures cancer. I am not talking here about the standard suggestions to reduce red meat, avoid processed foods and eat lots of fresh fruits, vegetables and whole grains. We all know those suggestions for a healthy menu. I am thinking, instead, about the selections we make within those categories.
Going to Whole Foods or other specialty markets can be a pleasant and/or an overwhelming experience. There are many choices of potatoes or pears or kale, and there usually is a price difference between the organic and the regular types. Even if we are not on strict budgets, we probably wonder whether it is worth it to spend the extra money for the organic carrots. I make different decisions on different days and am influenced too often by whatever I have most recently read on the subject. Locally grown produce seems smart because it is likely to be closer to harvest and more delicious. There are many articles about which things are likely to have been most sprayed with chemicals (spinach and strawberries top the list), and I usually spring for the organic versions of those items. To be more honest here, I only buy strawberries in season at local farm stands, but that is because those heaven-sent berries make the pale boxed winter versions taste like cardboard in comparison.
All of these thoughts are motivated by a recent article in The New York Times that says, “Now a new French study that followed 70,000 adults, most of them women, for five years has reported that the most frequent consumers of organic food had 25 percent fewer cancers over all than those who never ate organic. Those who ate the most organic fruits, vegetables, dairy products, meat and other foods had a particularly steep drop in the incidence of lymphomas, and a significant reduction in postmenopausal breast cancers. The magnitude of protection surprised the study authors. ‘We did expect to find a reduction, but the extent of the reduction is quite important,’ said Julia Baudry, the study’s lead author and a researcher with the Center of Research in Epidemiology and Statistics Sorbonne Paris Cité of the French National Institute of Health and Medical Research. She noted the study does not prove an organic diet causes a reduction in cancers, but strongly suggests ‘that an organic-based diet could contribute to reducing cancer risk.’”
These numbers are stunning. If you read more about the study, you will find that are counter-arguments and suggestions that the data might not be fully accurate and could be improved. But there seems no getting around the general message that we might want to reconsider our shopping habits if and when we can afford to do so.
At BIDMC, we have a dedicated oncology nutritionist with whom you can consult about your diet and healthy choices. Wherever you receive your care, there likely is a trained dietician who can discuss these issues with you. Trying to eat a healthy diet remains one important part of trying to stay well through and beyond cancer.
Breast Cancer Self-Exams Are Controversial but Worthwhile
A number of studies regarding the value of the monthly breast self-examination (BSE) conclude that it makes no difference in survival. That is, women's lives are not saved by this long-recommended practice. Indeed, twice as many women who do BSE undergo biopsies (with all their associated risks) that turn out not to be cancer as do women who have not been examining themselves regularly.
The National Breast Cancer Coalition has been saying for years that "there is currently no scientific evidence from randomized trials that breast self exam finds breast cancer in earlier stages." And don't we all know that finding breast cancer earlier rather than later is a good thing? Or is this something that we think we know that may not actually be true?
We have all been educated (preached at? directed to? ordered?) to carefully perform BSE at the same time each month. Younger women are told to do so right after their periods, and older women are told to pick a day each month that is easy to remember. These instructions come with the seeming promise that BSE might help us save our own lives, so how are we to understand this information? And, since it appears that the medical community has known for quite a while that BSE does not save lives, why are we still being told to do it?
I don't know the definitive answers, but I do have some strong feelings about this. First, most breast lumps are discovered incidentally by the woman or her partner. The reality that these lumps are more likely palpated during a shower or dressing or love-making does not seem to eliminate the potential value of BSE. I found my own first breast cancer in 1993 while stretching in the morning. I did BSE, but had not felt it on a recent self-exam. The fact, however, that I had examined myself regularly meant that I immediately recognized this lump as different. One absolute value of BSE is becoming familiar with the landscape of your breasts. When something is new or different, no matter how you find it, you will recognize it as a change.
Since most breast cancers grow very slowly and are likely to have been present for years before discovery, part of the thinking is that a few months more until a doctor or a mammogram finds it won’t matter. That is probably true, but it certainly won't hurt to find it a bit sooner.
My own experience is a reminder that not all cancers are seen on a mammogram. My 1993 breast cancer was never visible, even after my doctor and I could feel it. My second breast cancer, in 2005, however, was found on a mammogram before anyone could palpate it. I was grateful for this earlier detection.
We also know, unfortunately, that some breast cancers are lethal from the beginning. A woman who has the very bad luck to have a particularly virulent and nasty form of breast cancer may well die regardless of when it is found and the treatment she receives. Early detection and the right therapy cannot guarantee survival. We delude ourselves if we think that all breast cancers, if found early enough, will be cured. A major challenge in cancer research today is distinguishing between the cancers that need treatment and what the most effective treatment would be, and those that are unlikely to ever spread and can be cured by surgery and radiation therapy. The quickly growing field of targeted therapy is certain to be more and more helpful in making treatment decisions in the future.
Since, sadly, we know that no screening tool or treatment is guaranteed to cure every breast cancer, we still need to use everything we have to improve our chances of survival. Chemotherapy does not always prevent recurrence, but it does improve the odds of staying well and, in many situations, is worth the risks.
Mastectomies do not eliminate the possible recurrence of a local breast cancer, but they bring that risk down to about 1%. Radiation cannot promise that a breast cancer will not recur in that breast, but it makes it much less likely to happen. Hormonal therapies do not insure that an estrogen-receptor-positive breast cancer will never recur, but they are often more helpful than even chemotherapy in reducing that risk.
For screening, we know that mammograms sometimes miss cancers (especially in women who are still menstruating and have dense breast tissue), and that breast MRIs are exquisitely sensitive and may result in more biopsies that turn out not to be cancer. We know that even a surgeon's skilled hands cannot be certain that a lump is benign or malignant or whether axillary lymph nodes will turn out to be positive or negative.
I would characterize BSE in the same way. It is an imperfect tool; regular BSE cannot guarantee that we will not die of breast cancer. However, by knowing our own breasts well, we are primed to recognize change. Early detection, while not a promise, is our best shot at staying well.
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Breast Cancer Taboos
A few weeks ago, I was asked to speak at an annual breast cancer event organized by the BreastCare Center at Beth Israel Deaconess Medical Center. It was a lovely evening that included a generous dinner and a chance for women to be together and share their experiences. My assigned topic was Taboos: What We Can’t Talk About.
This was a delightful subject, and I was glad to have a chance to think more about the breast cancer-related issues that are generally left unspoken. Since most of these are just as relevant to people living with other kinds of cancer, this blog seems a good way to share my observations. I began by commenting that I had renamed my talk to: The Things that We Only Discuss in Groups. Over the years, I have regularly been in animated conversations in support groups where women shared what they had never before said aloud. My talk aimed to change the evening into something similar to a large support group, a gathering where people understood one another and fully accepted whatever was said or felt.
We began with Hair. Although there is plenty to say about losing and later growing back the hair on our heads, our attention that evening was all of our other body hair. There is the shared shocked moment when we look down at our bodies and realize that we look eight years old. There is the recognition that, without eye lashes, our eyes are bombarded with dust or wind and often tear, water running down our cheeks. There is the surprise that our noses run because we have lost nostril hair (and whoever thinks about nose hair?) that usually keeps the secretions in check. There is one of the few bonuses of hair loss: we don’t have to shave our armpits or legs for many months.
We moved on to Other Embarrassing Body Functions that usually are GI-related. It seems unfair that the side effect list for many chemo drugs includes both diarrhea and constipation. Many people have to wear pads, and one of my groups coined the phrase Sharts to describe the sudden explosion of both gas and “other.” We become acutely aware of our bathroom habits, and many people admit to accumulating a large pile of reading material or considering installing a television in the bathroom. On a less stressful level, there are ugly nails, nails that come out and a wish to avoid sandals.
There are hats that blow off and expose bald heads. There is hair that flies off our heads on top of a mountain (and, yes, I am speaking from experience with that one). There are breast prostheses that pop out in the swimming pool. There are colostomy bags that malfunction. There are other body parts that just don’t meet their usual standards.
There is Anger. Most girls are raised to avoid being angry. We all know how differently angry men are perceived from angry women; there is no need to use the common labels attached to women who speak their minds or behave more aggressively than modesty would dictate. Cancer makes us all angry. It gives us the problem of where to direct that anger. Unfortunately, the target is often our caregivers or our families, just because they are around and we know they will love us anyway. Every doctor or nurse or social worker can relate stores of being the target of unearned fury.
We may be angry at the world and take it out on strangers. I remember, with embarrassment, walking my dog one Sunday morning and meeting a woman whose well-behaved dog was off-leash. In our town, that is verboten except in certain designated areas, and I began to yell at her. My fury had nothing to do with her or her dog; it had everything to do with the fact that I had palpated a lymph node in my neck that morning and was absolutely terrified the cancer had spread. (Fortunately, the lymph nodes disappeared a few days later--but not before I had behaved abominably.)
There is the major topic of Sex. Sexuality and intimacy can be the focus of other blogs, but let us say that no one’s sex life is improved by a cancer diagnosis. When the conversation in groups is about What would you rather do on a Sunday afternoon than have sex? And the answers include scrub the kitchen floor, go to the dentist and sweep out the basement, we know that we are in trouble.
The point is that nothing about cancer needs to be taboo. We all do better when we talk about our worries, and we generally find that we have plenty of company. Let’s keep talking.
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This blog was written by Hester Hill Schnipper, LICSW, OSW-C, Oncology Social Work Manager Emeritus at the Cancer Center at Beth Israel Deaconess Medical Center.