The Internet is simultaneously the best and the worst of tools. This is especially true when related to a cancer patient’s search for support and information. Whereas people used to have to find medical libraries or spend hours in the stacks of large city libraries, it is now simple for anyone to type a few words into a search engine and be immediately flooded with information. The trick is sorting out which sites are reliable, what data actually applies to you, and when the words become more frightening or confusing than helpful. Let’s look at each of these potential problems.
FINDING RELIABLE WEBSITES
** Remember that anyone can post anything. There is no guarantee that what you are reading is factual.
** If something seems too good to be true, it probably isn’t true.
** Beware of any site that is selling anything.
** Generally speaking, websites that end in “.org” or “.edu” or “.gov” are more reliable than “.com”s.
** Be especially careful about websites that are really message boards and conversations. There are good ones like Cancer Connect (www.cancerconnect.com) , but many are not moderated or vetted in any way.
** There are excellent websites for specific diseases. Examples include Living Beyond Breast Cancer (www.lbbc.org), pancreatic cancer’s Pan Com (www.pancan.org), the Leukemia and Lymphoma Society (www.lls.org), and the Prostate Cancer Foundation (www.pcf.org). If you are looking for others, notice the sponsorship, whether they are primarily a fund-raising or educational/support service, and if they carry ads on their home page.
UNDERSTANDING WHAT IS RELEVANT FOR YOU
** If you have any question about something that you have read, ask your doctor about it.
** If you find yourself in the middle of an article that you don’t fully understand, stop reading.
** Unless you have medical or scientific training, don’t expect to fully understand articles from medical journals. These can quickly become articles where you miss the nuances and are scared.
** Never assume that any statistic or recommendation is right for you. There are so many complicated variables, and no two people are the same.
** Remember that any statistics that you read are old. In order to report on five or ten year survival rates, the people studied have to have been treated a number of years ago. There has been progress in cancer treatments, and there are not yet long-term statistics for them.
** Be especially skeptical about information from non- professionals or non-professional websites. That is, don’t ever make someone else’s story your own.
** Remember that even the best sites are not talking about any one person’s situation. For that, you can only listen to your doctor.
WHEN IT IS MORE SCARY THAN HELPFUL
** Stop reading.
** It is generally a bad idea to be on cancer websites in the middle of the night. It is an especially bad idea to be in chat rooms in the middle of the night. The only people who are awake and active are others who are frightened and not sleeping. Wait until the sun comes up.
** Remember that we all have different information needs. Some people want to learn everything possible and others want only to know what is necessary. Don’t force yourself to read more or less than is comfortable.
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Maybe it would help to talk with someone: finding the right therapist
Tips on finding the right therapist.
Many cancer patients and survivors find it very helpful to meet with a therapist to help them process their strong feelings related to the cancer experience. Rather than being a sign of weakness or poor coping, making this choice is empowering and reflects thoughtful self-care. It can make a major difference to meet with someone a few times or to continue longer if that seems useful. Going into therapy is not a long-term commitment unless you want it to be so.
How do you know that it is time to consider talking with someone other than your family and friends? If you are often anxious or sad or tearful, if you are not sleeping well, if you have lost your usual interest in people and activities, if you feel short-tempered and easily out of sorts, or if you think that your important relationships have been strained by your diagnosis and treatment, it is smart to take the next step. If you are wondering if meeting with a therapist would be helpful, the odds are that you are right. Trust your instincts.
How do you find the right person? Here are some suggestions to help your search:
- Geography and timing matter. It may be fine to go once or twice to a distant and inconvenient appointment, but it will become burdensome. The whole idea of therapy is to make your life easier, not to add a problem.
- Check out your insurance. There is likely a list of approved providers, and going to someone else may require you to pay out of pocket.
- Forgoing insurance and paying privately is sometimes the smarter choice. People who are concerned about privacy may not want their insurance companies (and, by extension, their employers) to have any information about their mental health needs. Just as insurance companies can ask your doctors for information about you, they can ask your therapist.
- Clinicians who do not take your insurance may well have a sliding scale and will work with you to make the cost manageable.
- It is vital that your therapist has experience working with people who are being treated for cancer. You don’t want to spend your precious time or money educating her about your treatment. When you make the first call, this should be your first question.
- Consider clinicians with different backgrounds. You likely don’t need a psychiatrist unless medication is involved, and, in that case, she could serve as a consultant. Social workers, psychologists and mental health counselors do this kind of work.
- Ask your doctors or nurses for referral suggestions. If there is an oncology social worker at your treatment facility, she may be available to meet with you or will know other therapists in the community with this expertise.
- If you have friends who have been to a therapist, consider asking them for a name.
- Recognize that you may need to interview more than one therapist to find the right person. Don’t be discouraged if the first one does not feel like a match.
- The most important thing will be the relationship between you. In order to trust and work with a therapist, you need to like her. Just as in any other relationship, the chemistry matters.
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Summer is not everyone’s favorite season, but it has a special ease and magic for us all.....
A version of this column has become a tradition over the years of my writing this blog. Summer is not everyone’s favorite season, but it has a special ease and magic for us all. It has been my personal and clinical experience, too, that our summertime memories have importance for us all. Whether we remember a summer romance or lazy hours on the beach or working in the garden or chasing fireflies in the dusk, we smile when we remember.
Some years ago, I had coffee with a dear friend who had also been treated for cancer. Thinking about our health histories, but also about life in general and the natural process of aging, she said: "How many more summers do you think that you have?" That question has stuck with me and comes up for examination every year.
As everyone knows and most people try to avoid, none of us is going to live forever. No one leaves this world alive, as they say. For those of us who have had a cancer diagnosis, that reality is very clear and very present in our thoughts. This is one of the very real differences between us and our luckier-in-health friends. Hearing a cancer diagnosis is the equivalent of receiving a special delivery letter that contains the news of our mortality. In the first months of panic, there is nothing settling about this reality. As time passes, it can become a helpful reminder and perspective. We learn not to waste our time on people and projects and activities that are negative or uninteresting or hurtful. Summer is an excellent example.
In New England, at least, summer is fleeting. In the brief months, we have some days that are miserably hot and humid, some that are rainy and a precious few that are perfect. A perfect summer day probably means a cloudless sky, low humidity, cool breezes and a temperature of about 80. Our job is to truly notice and appreciate it. We need to see the hummingbird outside the window, the circling gulls, the colors of the water and the feel of the air on our skin.
We need to remember that winter will come, and the memory of this day will be a comfort. When we must again confront the difficult moments, we can easily move to metaphor and think about the treasures of the good ones. Many people have told me of the importance of going to their happy place in their minds while lying in an MRI or CT machine. More generally, we can use the memories to remind us that better times will come again and that we have been blessed by the ones we have already experienced.
This means several important things to those of us who have felt the cold breath of mortality. We need to notice; we need to remember, and we need to fill our lives with as much beauty and happiness as possible. Don't let this summer pass without doing the things that are the essence of the season for you. My list is probably different than yours but I need to wiggle my toes in a sand beach, eat fried clams, have a gin and tonic at dusk, sit (or better yet, lie on a blanket) and look at the stars, admire the fireflies, go barefoot as much as possible, and be near and in and on the water at every possible opportunity.
Autumn will come all too quickly, and we can't go back. Pay attention to summer and its meaning in your life.
Replace the "Bucket List" with the "Other List"
We are all familiar with bucket lists that encourage us to go ahead with experiences that are important and, perhaps, to take some thrilling risks. This expression is commonly used, but does not suit everyone. There is no rule that says any of us need to focus on dreams or goals on a list. Some people are much happier concentrating on daily life and the pleasures that come more easily.
There is, however, a second and equally important list that can be just as useful. A let-it-go list can help us recognize the commonplace annoyances that, in the face of cancer, just don’t matter. Identifying these triggers can improve anyone’s life and free us of unnecessary stress and worry.
As we get better at distinguishing minor troubles or pressures from important ones, the list can remind us of where we want to spend our time and energy.
Here are some principles to consider when creating your own list:
- When you face a problem, assess the long-lasting impact. Will the problem matter in a week’s time? If not, put it in the let-it-go column.
- Learn to start from “no.” Most of us are socialized to say “yes” to requests, and we may feel burdened and obligated later. Of course, you may want to bake those cookies or go to that event, but think about it before accepting.
- Spend your time and energy on people and things that make you happy, not on fulfilling other people’s expectations. Cancer gives you a trump card, so don’t be afraid to play it when appropriate.
- Forgive yourself and others. You may have some regrets, but that is much better than having done nothing to regret.
- Don’t worry so much about routine activities, such as dusting the furniture or vacuuming the carpets. Once you eliminate these mundane tasks, see if you or anyone else cares or even notices.
- Don’t waste energy on negative people. Find time for people who make you feel better.
- All of us have financial constraints, but facing a serious diagnosis can provide a great opportunity to tap into that rainy day fund, perhaps prompting you to go on a trip or enjoy dinner at a restaurant you’ve never tried. As they say, you can’t take it with you—so go ahead and splurge. If a splurge is not part of your budget right now, perhaps you can go ahead and spend a little more than feels comfortable. Put yourself first some of the time and always put those you love ahead of others.
- Remind yourself that many things are out of your control, including the outcomes of scans or treatments, and learn to slow down and take a deep breath through these anxious moments.
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Let me be clear about my credentials to address this important topic. Although I have twice been through extensive cancer treatment, have worked as an oncology social worker for more than 30 years, and was divorced and a single mom the first time that I had breast cancer, I have not lived as a single woman with cancer during or after treatment. When the first cancer happened in 1993, I had a partner who later became my husband. It was not exactly like being married, especially in my panic about my daughters’ needs and futures, but it also wasn’t exactly being alone. I know that.
Although flavored by my personal experiences, my observations are from my experience of working with many single women as they moved through diagnosis and treatment and recovery and, hopefully, onto ongoing good health. There have been some who were less fortunate and who had to contend with advanced cancer alone. That is even harder.
There are a number of issues to be considered: managing physically, psychologically and logistically as well as staying in or re-entering the dating world. Very honestly, I have known only a handful of people who tried to date during cancer treatment. It may have briefly seemed like a good way to feel more normal and try to have fun, but it usually turns out to be challenging if not almost impossible. Think of it along the same lines as looking for a new job while in the middle of chemotherapy. It is very hard to explain the way you look, the way you are feeling, the many demands on your time and the gaps in your resume.
There are, of course, exceptions to any rule, and some people have found dating an excellent strategy to enhance their coping and general quality of life through cancer. If this is your choice, try to be prepared for some rocky moments and disappointments—which, of course, is always true in the dating world. Dating after treatment is usually a much more gratifying experience.
Figuring out how to manage the demands of treatment – rides, meals, housework, dog walking -- is harder without a partner. Remind yourself that there are plenty of partnered people who don’t feel supported. In some ways, it can be even more lonely and difficult with a bad partner than being alone. Single people often have wonderful friends, families by choice, and this is a time to rely on them.
There are a number of good websites that enable you to maintain as much privacy as you want while trying to organize help. Look at www.lotsahelpinghands.com and www.caringbridge.org. You can ask a friend to manage the site for you, and it is almost always a helpful way to enable friends, colleagues, or neighbors, who may not know one another, to work well together on your behalf. If you don’t feel that you have a network of friends who can or will come to your aid, talk to a social worker at your hospital or treatment center. There are various community programs that can help, and she can also help you identify resources that you may not have considered.
The emotional challenges may be more daunting. You may feel very alone in the middle of the night and wonder if you will ever again feel strong, pretty/handsome, and desirable. Meeting new people and dating is rarely easy, and adding cancer to the mix complicates it more. I promise that I have known many women who found a loving and committed partner after cancer. It happens.
This is the honest report of my decades of listening to stories: Yes, there are a few men or women who will flee when you disclose your health history. It is painful, but remind yourself that these people would not be reliable, loving partners in life. Remind yourself, assuming that you are not very young, that no age-appropriate potential partner comes without personal baggage or with a perfect body. A few women have told me about men who expressed genuine empathy for their situation, but explained that their wife had died of cancer and they just could not manage the risk again. More women have reported men who said something like: “I wish I had known you then and could have helped.” My very favorite story came from a woman, post-mastectomy without reconstruction, who told a new man about her changed body. This tattooed, chained, leather-wearing biker responded this way: “Honey, that just means that, when I put my head on your chest, I will be that much closer to your heart.”
Don’t share your cancer history, just as you would not share any important intimate history, until you think there might be a future and until you are thinking about physical intimacy. Then you must tell the truth, share the genuine hope, and trust that any good man or woman worth having will want to be closer to your heart.
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Depression and Cancer
When thinking about cancer, many people perceive that either you are cured or you are dying. Few appreciate the middle ground of living on borrowed time.
In the not so distant past, it was realistic for individuals who were diagnosed with metastatic disease to anticipate dying fairly quickly. Today, however, there has been real progress in the treatment of many advanced cancers. Some people live with this diagnosis for a long time. They find themselves in murky and uncharted territory: not healthy, not well, but also not dying anytime soon. It’s very challenging to learn to live with terminal uncertainty, to make sound decisions for yourself and your family and to maintain a balanced view of everyday life.
Over the years, as an oncology social worker, I have worked with many people living with advanced/metastatic/Stage IV cancers. I have developed immense respect for the emotional challenges of this situation.
Depression is the most commonly cited psychiatric symptom among patients with advanced cancer; anxiety is a close second. The reported prevalence of depression ranging from 0%-58% varies enormously. This is partly because of the difficulties in evaluating mood and the range between normal sadness at one extreme and a major depression at the other. Major depression is most highly associated with lung cancer, pancreatic cancer, breast cancer and oropharyngeal cancers. Individuals with a pre-existing anxiety disorder or other premorbid psychiatric illness are more likely to be depressed and have difficulty coping with cancer. Since depression often accompanies anxiety or pain, it is tough to discriminate between a pretty normal response to those difficulties and a clinical or major depression.
Most people with Stage IV cancer, however, are not clinically depressed and are not likely to benefit from medication. Rather, they are sad and scared and completely at a loss about how to think about their lives and their futures. It is very challenging to separate symptoms caused by the disease itself or cancer treatments from those of depression.
For many patients, the most useful coping strategy is a shifting mixture of denial, distraction, and mindfulness. Denial is the bulwark of managing. We are not talking about total denial that would keep someone from going to medical appointments, taking appropriate treatments or paying attention to self-care. We are talking about functional denial that enables an individual with a lethal illness to go on with a good life without being consumed by daily fear and misery. There is a limit to how much distress anyone can feel and still function. Most people describe a turning point, a moment when they realized that they had gotten through most of a day without tears and, perhaps, had even enjoyed themselves. This is a good start.
Then distraction becomes the order of the day. The big questions have to do with work decisions and family time, but it helps to stay busy, see friends, organize activities and take on new projects. One woman taught me the wisdom of keeping two calendars: one for medical appointments and one for everything else. The “everything else” calendar should have at least one entry every single day. Plans can be made in pencil with the understanding that they may need to be cancelled, but making plans is imperative. Too much time to think or too much time lying on the couch never helps.
The third leg of our basic framework is mindfulness. It is not easy to live in the moment, but it is clearly the best possible way to cope with so much uncertainty and fear. Over and over, I have said to patients: “You are not going to die today.” One patient expanded the mantra to: “I am not dying today, and I am not dying this week or even this month. Anything else is too far away to worry about.” These are words to live by.
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Cancer Scars - How do you feel about your scars?
There are scars and there are scars. There are the ones that are very obvious; there are those that are hidden but can still cause real pain; and there are those that are invisible because they affect our psyches.
I have some small scars that are easily overlooked and one whopper of the obvious sort. Over the years since I underwent a mastectomy, the latter has faded to a very thin line, the same color as the flesh around it. But there it is. And there the breast is not.
Honestly I barely notice it. When I am dressed, no one knows (or at least no one would know if I would keep my mouth shut), and, without clothes, it is now just as familiar a part of me as any other body area. When asked how I feel about the decision not to have reconstruction, I say something like: "I don't love how I look, but I am totally adapted to it, and I never regret the decision." I hope we can all come to that place. In my experience as an oncology social worker, just about all of us do.
I work with a woman who had a mastectomy and reconstruction who is living daily with real trouble from her scars. She has chronic discomfort and pain across her chest, moving around her torso to her back. She has been told that the pain is due to scar tissue, and that nothing is really going to improve it. She is working with a massage therapist who has expertise in this area, but any improvement has been small. This is an unfortunate example of invisible scars that are causing more physical and emotional pain than the ones that decorate our bodies.
Perhaps most important of all are the completely invisible psychic scars. Cancer has taught us that we are not invincible or immortal. We likely feel more fragile and vulnerable and scared than before. We may feel diminished. Part of recovery is slowly learning to feel stronger because of what we have experienced.
Of course, scars are not only related to breast cancer. Any surgery leaves some scars behind, and many cancer patients have surgeries. Depending on the location of the cancer, the scars may be really obvious or readily covered. Another patient had big surgery for a head and neck cancer, and all the concealer in the world can’t hide her scars. Some people even have parts of their jaws or an ear removed as part of cancer surgery, and they need to find real courage to go out in the world and be themselves.
Many people have cancer surgery in their abdomens, so big vertical or horizontal scars, sometimes referred to as zippers, remain with them. Over time, all scars fade, and any one can be reassured that s/he will look different several years post-surgery than immediately thereafter. It is possible to have tattoos inked over scars, and I have seen some lovely examples.
Most of us just learn to live with scars. Our challenge is to find a way to be proud of what we have endured and to view our scars as marks of our courage and experience. In some ways, accepting scars can be like accepting aging. We can fight it camouflage it to some extent, but there it is and there it will be. And when it comes to scars, there they are and there they will be.
I’m fond of a line from the Carly Simon song: "It takes a really big man to love a really big scar."
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Balancing Work and Cancer?
One of the challenges of living with cancer, especially during treatment, is finding the right balance in your life. Suddenly, our personal lives don’t only mean time with family and friends, but also hours filled with needed appointments and naps.
Most people who are treated for cancer take some time off from work. There is wide variability in how much time away from work is necessary or helpful. Depending on your course of treatment, you may need anything from a couple of weeks to six or more months of leave.
In addition to the time dictated by medical/physical necessity, there are other factors that influence this decision. Where you work and what you do matter a lot. If you teach kindergarten, you likely will be worried by the constant physical demands and the exposure to every possible germ and virus known to 5-year-olds. If you work in construction, you can't be on the job until you have completely regained full physical strength. If you work in an office, the attitudes of your supervisor and colleagues will influence your planning. A manager who is flexible, understands your need for doctors' appointments and allows you to work shorter days when you are not feeling too well may make it feasible to work through much of treatment.
Then there are the financial realities. It is helpful to speak with someone in Human Resources to explore the benefits available to you. Do you have short-term disability benefits? What happens to your insurance during a leave? Do you work in a wonderful place that allows others to donate unneeded sick days to you? If you are only paid for the days you work, the pressure is even greater. If finances will be a problem for you, speak with an oncology social worker who can tell you about possible sources of assistance. Ask your doctor for a referral.
As an oncology social worker myself, my best advice, if you have choices about work, is to not make a decision too quickly. Certainly, you will need some time to recover from surgery. Beyond that, the best solution is impossible to generalize and hard to predict. If you can wait to see how you react to chemotherapy or when your radiation appointments are scheduled, it will be easier then to make the decision. As a general statement, people tend to feel the worst on days 3, 4, and 5 after chemo. This is variable, of course, and some people do better or have longer periods of malaise. Think about this when you schedule your treatment. Would you rather be sickish during the week or on a weekend?
Do not listen to everyone else's opinion about your working. This is very important. It’s an area where there is a lot of projection, judgment and values--often without consideration for your particular physical, emotional and financial realities. Only you know what is possible and whether it would be better for your psychological health to be home and away from any professional stresses, or whether you would be better off with the normal distractions of the workday.
Returning to work is also tricky. If you have been away for a while, you will have to face others' questions, stories, and sidelong glances. You likely look differently than you did the last time they saw you. I have had many conversations with women who could not decide whether they should wear a wig to work or go without, sporting the new short hair that looks so different from their old self. It can be helpful to speak with one or two people and ask them to ease your return by telling others what you look like and what your wishes are regarding talking about your cancer.
Would you prefer to tell your story repeatedly or would you prefer that others say only: "Glad you are back," and leave it to you to say more--or not? We all have different reactions to this issue, and it will help to think about it before your return. The more concrete you can be with your requests, the more likely it is to go smoothly.
Unfortunately, you can count on being ambushed by at least one thoughtless remark. Be prepared, when someone tells you about her neighbor who died of cancer or asks a very intrusive question about your treatment or prognosis, with my best all purpose response: "Why would you ask me that?" Note carefully: to use this line most effectively, you have to pause for a moment, look thoughtful, and then ask in a puzzled, not an angry, way. Done correctly, it works every time.
My final advice about returning to work is to try to negotiate a gradual re-entry. If you can work part-time for the first week or two, it will be easier. You will be surprised by your physical and emotional fatigue when you return to your job. Working for partial full days is easier for many women than going fewer than five days per week. Again, you know best what is possible in your position and what seems right for you.
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Dreaming Big After Cancer
What are your dreams after cancer treatment?
When we are first diagnosed with cancer or going through tough treatments, it may seem impossible to plan, let alone to dream, at all. We are consumed with just getting through each hour and each day. What can I manage to eat for lunch? Do I have time for a nap before I have to pick up my kids? Will I ever have more energy? How many appointments do I have this week?
Gradually and fortunately, time passes, and we begin to pick up the pieces of our lives.
I remember a woman who described these first months this way: It feels as though my body and my life are a bombed-out city. I have to rebuild each building and each block brick by brick. As more of those bricks are laid, we can begin again to think of the future.
It is scary to look and to plan ahead. If we are followed with regular scans or other tests, we may only be able to think in small blocks of time, three or six months, between those tests. If our care does not include such regular testing, the parameters are somewhat different, but most of us are initially hesitant to look too far ahead.
It turns out that it is really important to think about dreams and pushing envelopes and living in Technicolor. Any of us who have been through, or are still in the middle of cancer know this. As we feel stronger, we are no longer willing to delay our dreams or settle for less or take one single day for granted. I honestly think a true danger of long-term survivorship is the ease of returning to a pre-cancer state of denial and just going along. We have learned that life is finite, and we never know what is coming around the corner, and it is a big and beautiful and wonderful world, and our choice should be to live it as fully as we possibly can.
There is also a danger in the self-imposed pressure to make the most of everyday and live it as though it might be your last. No one can do that. It is perfectly okay to have times of routine, but we can't ever lose sight of the possibilities and the critical importance of following our hearts and our dreams. You know all the old clichés about no one ever regretting not spending more time at the office (or painting the basement or cleaning out closets).
My husband and I have been very fortunate to be able to see much of the world. Some of our travels have been for business and some purely for pleasure. We are now nearing the one-year anniversary of the most spectacular trip we ever have taken. Last January, we went to Antarctica, spending almost two weeks on a small ship that traveled through Drake’s Passage to the Antarctic Peninsula.
Why? Because we had been many places and wanted something entirely different. Because the pictures of the ice were other-worldly beautiful, and the reality turned out to be even more wondrous. Because, when zooming around in a Zodiac, you can pick up chunks of opaque black pock-marked ice that are 7,000 years old and use cubes of that ice in your drink that night. Because I have always loved penguins and whales. And because I read an article in which a traveler returned from there and said: "Now I believe in God."
Whenever I think of that trip, I remember those words. For me, too, it was impossible to visit that place and not be filled with a sense of the divine (with a big or a little D).
I implore you to find and explore your dreams.
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Making Cancer Decisions
Were you were an equal voice in making your cancer choices?
Over the years, there has been a growing trend to include the patient’s voice in cancer treatment decisions. In some ways, though, it was easier when we all deferred to our doctors and just did what we were told. I am certainly not advocating a return to those practices, but it can be confusing and even overwhelming to weigh and understand our choices.
Some people try to become experts on their disease and situation. They read everything they can find, spend hours online and soon understand much more than they did previously. We all agree, however, that it is impossible to take a crash course and know as much about cancer as your experienced doctors know. We do have to acknowledge their expertise and experience.
Other people who want only to hear what their doctors tell them are believers in the “need to know” concept. This is equally fine; we all know what will help us best get through these tough times.
No one could more fervently support shared decision-making than I do. I passionately believe that patients need to be heard and involved in every aspect of their care, and that their personal understanding of their lives and goals and values trump everything else. I am also aware that this sometimes makes tough choices even harder.
This week I met with two women who are torturing themselves about cancer care decisions. One has completed adjuvant therapy for breast cancer and has been offered a chance to participate in a clinical trial for women who are thought to be at high risk for recurrence. This trial involves taking the standard therapy (an aromatase inhibitor) plus another drug for two years. She will have to have her blood drawn weekly, at least for the first few months and maybe longer, and may experience some side effects. And, of course, no one knows if this will turn out to be helpful to her or to anyone. After all, the whole point of a clinical trial is to get that information.
The second situation involves a newly diagnosed breast cancer patient who is in the gray area regarding the need for chemotherapy. She had a small ER positive breast cancer, grade III, and an intermediate Oncotype score (a test that can help decide whether chemotherapy will be useful in women like her). She is terrified of the risks of chemotherapy and equally terrified of a cancer recurrence.
Making medical decisions can be even harder at other points in cancer care. I am thinking specifically of the very painful choices near the end of life. When is the right time to stop treatment? When is it appropriate to transition to hospice care and an emphasis on quality of life? You may be aware of a study released a few years ago that found that some people with advanced cancer lived longer when they stopped treatment than did those who continued on with chemotherapies that were unlikely to bring much benefit. The questionable treatments brought side effects and sometimes even shortened lives.
Considering when to stop cancer treatment is a big subject that should be separately discussed. For the purposes of today’s blog, let us use these circumstances as an example of a time when the patient’s voice ought to (I think) have the most strength. Of course, we always need to be fully informed and understand the possibilities, but it is our lives that are being touched.
A short list of points to consider may be helpful in understanding your preferred role in decision-making:
- Does your doctor give you as much information as you want and need about your treatment choices or your cancer in general?
- If not, can you clearly express your wishes and ask for more clarification?
- If you ask her to do so, will your doctor clearly give you her opinion?
- Can you return to a conversation later and ask more questions? Remember that it is wise to try to prepare in advance to best respect and save everyone’s time.
- Do you feel heard and respected by your doctors? If not, this is a giant red flag and time to consider a change.
Financial toxicity and cancer care
Upon hearing a cancer diagnosis, people don’t usually think of expense. Most of us, in those first moments of panic, think something along the lines of, “I don’t care what this costs! Make me well!”
The phrase “financial toxicity” refers to all the money problems that can be related to cancer treatment. Not surprisingly, many studies have found that people going through cancer are more likely to experience serious financial issues than others. Other studies indicate that cancer survivors continue to struggle with finances as they recover, return to the work force and deal with bills. Did you know that medical bills are the most common cause of personal bankruptcy? The level of financial difficulty you might experience is related to many factors in your household, including other resources, savings, family help, benefits and whether you can continue to work.
As a little time passes, the financial realities become painfully clear. The squeeze comes from two directions: the diminished income while going through treatment and the bills and expenses related to cancer care. Let’s think first about the reduced income that affects most people to some degree. If you are fortunate and have an understanding employer and good benefits, the financial hit may be less. It helps to have paid sick time and available disability insurance. Disability insurance usually pays only up to 60% of income, but it is not taxable, and it is a big help. Unfortunately, it you don’t already have this benefit, you can’t buy it now to cover this situation. Note: you probably can buy it in the next sound of signing up for benefits, and I would strongly encourage you to do so.
Not everyone has such fortunate employment circumstances. All too many people don’t get paid if they don’t come to work. Others have limited sick time available and little flexibility with work schedules. I remember a nurse who worked at a large urban medical center where he anticipated the benefits would be good. Unfortunately, it turned out that, since he was employed as a per diem worker, none of those good benefits were available during his cancer treatment. Blessedly, many of his colleagues and co-workers were able to donate some of their own sick time to him, and that cushion helped him and his family get through the difficult months.
If you know that your salary is going to be reduced or absent for a while, talk ASAP to someone at the hospital or clinic who can direct you to available institutional or community resources. At BIDMC, a good place to start is with an oncology social worker who likely will refer you to a Community Resource Specialist, Patient Navigator, or someone in the appropriate financial office. Cancer Care, a wonderful organization based in New York, publishes an annual guide of resources: https://www.cancercare.org/helpinghand
Having cancer is expensive. Even if you have good insurance, there are deductibles and co-pays , co-insurance, and uncovered medical expenses. There is the cost of transportation to get to the hospital, parking once you are there, perhaps additional childcare or household help. The overall expense is also related to the kind of cancer and treatment that you will receive. If treatment will extend over many months, it will be harder than if you need surgery only and can then concentrate on recovery and a return to work.
For many people, it is the cost of drugs that is the biggest hit. Especially for some of the newer cancer treatments, monthly co-pays can easily be in the hundreds of dollars. Trying to reduce their own costs, insurance companies may tier drug costs and apply higher co-pays or deductibles to some drugs than others. If you find yourself in this situation, talk to your doctor. This may feel difficult and scary, and of course your primary concern is receiving the best available treatment. However, it is possible that there is another option that will be just as effective and less costly.
Many pharmaceutical companies have benefits for patients who can’t otherwise afford their drugs. These programs do have income limits, but it is worth inquiring.
For a longer discussion of this important issue, you might want to look at this publication from the National Cancer Institute: https://www.cancer.gov/about-cancer/managing-care/track-care-costs/financial-toxicity-pdq
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Scanxiety: Cancer Tests Don’t Get Easier
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.
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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.
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.