Sharing decision-making with your cancer doctor
Living With Cancer is published by the Cancer Center at Beth Israel Deaconess Medical Center, a Harvard Medical School teaching hospital
by Hester Hill Schnipper, LICSW, OSW-C
It likely was easier in the era when patients were expected to simply follow doctors’ orders. Most of us would not want to return to those paternalistic days, but it can be weirdly comforting to be told what to do by a trusted authority figure. Now good doctors involve their patients in decision-making. While this approach creates a positive sense of involvement and empowerment, it can also cause some anxiety, uncertainty and pressure—especially if family members or friends have different ideas.
Making treatment choices is an ongoing part of cancer care. In the beginning, there may be many decisions to be made. You may be faced with identifying the best doctors and/or treatment facility as well as considering surgery, radiation, and/or chemotherapy or other systemic treatment. Sometimes it is straightforward, and there is a single recommendation. Sometimes, however, there are several seemingly equally good choices, and you are asked to make a decision.
This is the moment when many patients fall back on the question: What would you recommend to your wife or daughter? While this isn’t a bad question, there is no guarantee that you will receive an authentic answer. In addition to evading the question, the doctor may well just turn it around, saying something like: You need to make the choice that is best for you.
The following strategies can help you keep these decisions in perspective and ensure you are making choices on your own terms:
* Whatever the situation, create a list of pros and cons.
* Get as much information as you can. You can decide whether you want to immerse yourself in the medical literature or read very little. You can delegate the research to a friend or family member or ask your doctor to explain the options and make recommendations.
* Stick with reliable resources, such as the American Cancer Society, the National Cancer Institute or the American Society of Clinical Oncology’s patient website. Be careful not to do too much Internet research, and stop reading if you start feeling anxious. For everyone, there is a moment of overload. Remind yourself that you are not able to learn everything, and that it is not necessary to do so.
* You almost always have time to consider your choices. Cancer is very rarely a medical emergency.
* Consider speaking to a few people who have a diagnosis similar to yours or who have considered the same surgical or treatment options. Do remember that every one and every cancer is different.
* All of us have different priorities and worries, and identifying yours may make things more clear. For example, if you have small children, you may be most concerned about the recovery period and your ability to meet your responsibilities.
* Try not to obsess over statistics or worry that there is only one right choice. Statistics describe the experiences of large groups of people; no one knows what the outcome will be for any one person.
* Pay attention to your gut as well as your brain.
* It is critical that you respect and feel comfortable with your doctor. If you don’t, find another one.
* Identify the worst possible outcome of a set of options and do your best to avoid it. This strategy can help you focus.
* Virtually none of these choices mean the difference between life and death. If they did, your doctor would be telling you what to do. For many people, the choices are among several good treatments and, in some cases, include clinical trials.
* As the patient, you always get the final say. This is your life, so trust your instincts.
How do you begin to recover from cancer?
It is often an unpleasant shock, after completing treatment for cancer, to find yourself feeling more distressed than you have since the first days following your diagnosis. As everyone around you offers congratulations and expects you to be feeling fine, you are likely to be exhausted, depressed, sick of being bald, and worried about the future. You want your old life back and are just starting to realize that will never happen. What you can expect, instead, is that a “new normal” will gradually evolve. (Note: I strongly dislike the new normal phrase, but it is widely used, and I don’t have a good substitute.)
It is only after treatment, when you no longer have to concentrate on just getting through each day, that you can appreciate what has happened. Especially people who have pushed through the months of treatment to care for their families, go to work, and try to keep life as normal as possible, may find that they are now emotionally and physically depleted.
First, remember that recovery will take approximately as long as the duration of your treatment—that is likely to be many months, although you will feel better and better as time passes. Try to be gentle on yourself and allow for days when you feel more tired, upset, or overwhelmed by the world around you. It is vital that you remind your family, close friends, and, if possible, work colleagues that you have just finished some very tough treatments and that it will take time for you to be fully healthy and strong again. Do not immediately try to do everything that you were doing before your diagnosis; ease back, as gradually as necessary, into your full schedule.
You will find that some of your relationships feel different. Even the people who love you most can’t really understand what you have experienced. It can be hard to be patient with their seemingly small problems or to be enthusiastic about some of their plans or life events. For example, if you are now facing infertility due to chemotherapy, it is very painful to hear of friends’ pregnancies or new babies. If you are struggling financially after losing income during treatment, it is hard to hear about your friends’ vacations or purchases. Whatever problems existed before your diagnosis will be waiting for you now. If you were unhappy in your marriage, dissatisfied with your job, or struggling with your adolescent daughter, you won’t find that things have magically improved.
Find a few people with whom you can be completely open and honest; these may be your spouse, a close friend, or a therapist. If you decide that talking to a therapist would be helpful, be sure to find someone who is familiar with the issues facing cancer survivors. This is a good time to consider joining a support group. You will find that other cancer survivors get it in ways that no one else can.
Learning to again be comfortable in your body is a process. We are all especially aware of every ache, pain, or cough and we fear that it signals cancer’s return. Most doctors go by the “two week rule.” If a symptom goes away by itself in two weeks, you don’t need to worry. If it lasts longer, call your doctor. Of course, there are exceptions; anything that seems very alarming or dangerous should be reported immediately.
Physically, the return to robust health can feel painfully slow. This is an excellent time to continue or begin a regular exercise program. There is some evidence that exercise may diminish your risk of recurrence, and, at the least, it will help you tone up, lose a few pounds you probably gained during treatment, and begin to feel stronger and more in control.
Your perspective has changed. You have had time and occasion to think about what is most important to you, what your priorities are, how you want to spend your time and your energy. As you slowly resume your regular routines, continue to think about what you have learned about yourself and your values. This is an opportunity, if you wish, to make some changes. At the very least, it is a chance to consider your life and how you wish to lead it. Although you would never have chosen it, you have been given the clarity to reframe your life while you still have life ahead.
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Learning to Love your Body after Cancer
We all know that cancer changes us in many ways, and our physical appearance is one major one. It is often distressing to stand in front of a mirror and contemplate our bodies. Whether we are staring at temporary things like hair loss or fresh scars or at permanent ones like missing body parts, we are different and rarely improved. There are also the changes that may be under our control: expanded waistlines and less-toned muscles. Note the may as most of us learn that, no matter how hard to work at the gym, we can never regain quite what we had before cancer.
Living well after cancer means finding ways to love ourselves and treasure our lives. We are free to dislike any or all cancer-related physical changes, but we should also recognize that these physical differences do not dictate who we are. Time will help with the adjustment, but there are ways to hasten the process:
1) Think clearly about what is likely to improve. It may take three years to grow your hair to the hoped-for length, but it will grow back. In the meantime, find ways to enjoy new hairstyles along the way.
2) Accept your new reality. Some parts of your appearance may be changed forever. A breast can be reconstructed, but it will never be the original. Your weight and body shape may never return to your pre-cancer normal. It is better to accept an additional 10 pounds than to beat yourself up for not meeting a number on a scale. An amputated limb is not going to reappear.
3) Seek out experts to address your concerns. Whether adjusting to the scars of surgery or less visible results of treatment, including changes to libido, seek out specialists to help you manage and adjust. If you don’t know where to go, an oncology social worker or your primary care doctor may be able to point you in the right direction.
4) Remember that strangers are not likely to see your perceived flaws. Those closest to you may notice the changes, but they will most likely love you just the same.
5) Try not to compare your present body with your body before treatment. Instead of self-criticism, practice being kind to yourself. Remind yourself of what you have accomplished and give yourself credit for your bravery and perseverance.
6) Make efforts to enhance what you have. Stop by the beauty counter to explore ways to create the illusion of thicker eyebrows, for example. Try out some volume-enhancing mascara to increase eyelash length and thickness. No matter your gender, consider buying a few new outfits or getting a new hairstyle that emphasizes your physical attributes.
7) If you hate your scars, a good tattoo artist may be able to help hide them.
8) You may feel alone in your experiences, but remember, all of us change as we age. You have good reason to be upset, but also justification for treasuring the intangibles: relationships, experiences and life.
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Cancer and Body Image
What does body image mean? This common phrase refers both to how we look to ourselves--how strong or pretty or handsome or healthy we think we appear--and also to how we actually look to the rest of the world. There are often big differences in these two perspectives.
Two examples: if you look at a photograph of yourself at 20, you may think that you looked beautiful. But when you were 20, you probably had lots of self-critical ideas about parts of your appearance and didn’t always think you were so gorgeous. A very different example is looking back at pictures taken during chemotherapy. I was cleaning out a drawer recently and found a photo of myself, bald, wearing a big hat and earrings and more make-up than usual. At the time, I thought I looked pretty darn good (for someone in those circumstances). However, when I look now at the image, I see myself looking ill and vulnerable.
This is a very big topic for a short blog, but let's start with the "patient/illness" part of our body images. Prior to a cancer diagnosis, most of us thought of ourselves as healthy and strong. We may have thought that taking good care of ourselves with attention to diet, exercise, and sleep gave us a health advantage. To be fair to our pre-cancer selves, our whole society is pretty delusional about the magical and protective powers of diet or exercise or stress management. We have learned the hard way that bad luck just happens, and eating all the broccoli in the world is no guarantee of continued good health. We may not even have thought about our health at all, just taken it for granted that all was well. Once cancer has happened, it is pretty impossible to ever return to that blissful innocence.
Other parts of body image include our appearance, our sexuality, and our strength and general sense of self. No one feels her most attractive, sexy, or desirable while going through cancer treatment. Hair loss, fatigue, nausea, a generalized sense of malaise--these do not add up to feeling "hot." They also don’t contribute to feeling interested or interesting. The feelings often persist into the weeks and months post treatment and become more distressing then. I have written many other blogs about sexuality and intimacy, so you can read some of them to further explore this part of today’s issue.
Our physical appearance is an obvious consideration. We may have lost a body part or had it altered. We almost certainly have scars. Our hair, post chemo, is different. Maybe we now have curls or grayer or thinner hair or hair of a different texture. We may have lost or gained weight and find it tough to return to our pre-cancer clothes. None of us looks in the mirror and think we see an improvement. Although it pains me to acknowledge this, I do think that going through cancer and cancer treatment ages us more quickly than the real passage of months or years. I don’t mean that we suddenly look ten years older than we did before diagnosis, but many of us feel that we have gained some sags or wrinkles and lost some healthy glow. Maybe this is really about the often-changed look deep in our eyes; we have been forced to consider painful truths and to get serious about life.
There is so much pressure in our world to look young and beautiful and healthy, and going through cancer is never an asset to these aspirations. Especially if we, before cancer, had some negative feelings about our bodies, thinking we were too fat or too small breasted or hated our legs, it becomes even harder to shift into more positive thinking. Let’s be clear: negative thinking is not going to directly impact your health (negative thoughts do not cause cancer), but feeling better about ourselves certainly makes a positive contribution to our days and quality of life.
So, how can we look at ourselves and feel mostly good and proud of what we have been through? The answer starts with being as kind to ourselves as we would be to each other. Yes, your hair looks different, but this style is becoming, and it is just wonderful to have hair again. Yes, our waists may be thicker and our stomachs less flat, but we have proven how strong and capable we are; that is not measured by belt size. We may have lost a body part or gained a reconstructed body part or been branded with lymphedema or scars or other visible reminders of what has happened. No one likes these changes, but I promise it is possible to accept them, to honor what they represent: wisdom and heroic effort and grace.
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Managing hair loss from cancer chemotherapy
Everyone hates losing her hair! Many women find that hair loss is one of the hardest parts of the whole cancer experience. Some men are equally distressed by this prospect and may be surprised by their reactions. It helps a little to know what to expect, to have a plan, and to have a range of options for covering your head (or not). It is also important to mention that hair loss applies to all body hair. It seems that eyebrows and eye lashes often hang on the longest and grow back the quickest when treatment is done.
Your doctor and nurse will tell you specifically what to expect from your particular chemotherapy treatment. Note that hormonal treatments and some chemotherapy drugs do not cause hair loss. Depending on the drugs you receive, you can expect total, or almost total, alopecia (hair loss) or just thinning. It won’t help to imagine that you might be the one in a million women who won’t lose her hair—all that fantasy will do is leave you less well prepared for the reality.
Different drugs have different effects on your hair. If you are told to expect thinning, it is harder to predict the outcome. Some people will lose most of their hair while others will “just” experience some loss. In this situation, the hair continues to fall out after each cycle of chemo, so there likely will be time to figure out where in the spectrum you will fall.
The most common scenario for drugs that cause total hair loss is that between 14 and 21 days after your first chemotherapy, you will lose your hair. If you were a betting woman, you could put your money on day #17. Some women will experience intense scalp tenderness one or two days before the hair starts to come out. This does not always happen, but, if it does, consider it to be your 48 hour warning.
Your hair will not all fall out at once. You will not awaken in the morning to find yourself completely bald. Instead, it will come out in patches when touched, combed or brushed, and will shed constantly. Some women are bald within a day; others have wisps here and there for several weeks.
Here are some strategies for dealing with the process of hair loss. You can:
- Have your hair buzzed or shaved. Some women do this before it starts to fall out; in this case, make an appointment approximately 10-12 days after your first chemotherapy. Other women choose to wait until they experience scalp tenderness or until the hair is coming out. You can ask your hairdresser, a family member, or friend to do this for you. Some wig stores also can buzz your hair. Note: If you are wondering whether your hair is falling out, it is not. Once it starts, there is no question about what is happening.
- Try to hold on to as much hair as possible for as long as possible. If this is your wish, consider sleeping in a hairnet or soft hat to minimize the rubbing of the pillow on your scalp. Touch, brush or comb it infrequently, and wash it as rarely as possible. You may keep a little hair this way, although it is not likely to look well enough to go out in public.
- If it is late winter or spring, consider saving the hair and placing it in bushes around your yard. The birds will gratefully use it to weave beautiful nests.
- If your hair is very long, you can donate a ponytail of at least 10 inches to Locks of Love (www.locksoflove.org). This group makes wigs for children who have lost their hair from chemotherapy, burns, or other medical problems.
It is normal to be very upset when your hair comes out. On the other hand, some women are relieved to have this part behind them and recognize that they are one step closer to being finished with cancer treatment.
Once the hair is gone, you have choices about what to wear on your head and even whether you want to cover your head. Some women feel brave and beautiful when bald and choose to meet the world on their own terms. All of us admire their courage and style, but most of us can’t do similarly.
Considerations during cold weather: Your mother was right when she told you that much body heat is lost through your head. You will be colder than usual. During the winter, even at home, most women are more comfortable with something on their head. You will want a couple of soft caps for sleeping.
Considerations during hot weather: Wigs are hot during the summer. It helps a little to keep a package of baby wipes in the freezer. In the morning, put a frozen wipe on your head and then cover it with your wig or hat. When it thaws, moisture will not run down your face, and you still will be more comfortable than with the wig right on your skin.
If you opt for a wig, you don’t need to buy a very expensive 100% human hair wig. They are hotter and more difficult to maintain, in addition to carrying a much heftier price tag. Look for a wig that is a synthetic/human hair blend or 100% synthetic. Most insurance companies help with the cost of a wig; you will need a prescription from your doctor.
If the purchase of a wig is a financial hardship, ask your nurse or oncology social worker about possible financial assistance or sources of donated wigs.
If you want a style that is like your own hair, go wig shopping before you lose your hair. Remember that most wigs have too much hair in them, and you will want yours trimmed or shaped by your own hairdresser or an expert at the wig shop.
Even if you doubt that you will ever wear a wig, consider buying an inexpensive one. There may be times when you don’t want to announce your patient status.
Hats are another option. There are innumerable hats to compare and choose from. Look for hats that come low enough over your ears and forehead to camouflage the baldness. Most baseball hats have a large hole in the back; unless you wear a bandana under it, your scalp will be visible. Remember that scarves, headbands and pins can all be used to add color and interest to solid color hats. For those events when you don’t want to announce your patient status, you may find partial wigs or hair pieces useful. These include baseball hats with an attached ponytail, and rings of hair (think medieval monk) that will show under a hat.
Many women prefer scarves to wigs or hats. Cotton or rayon scarves will stay on a bald head. Silk scarves make an excellent second layer, but will slide right off your skin. Take a few minutes to practice tying scarves in a variety of ways. Ask another woman, whom you see in the treatment area or waiting room, how she tied her scarf. Look for other ideas online, including at: www.bcforum.org/scarves.html
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How to tell which on line cancer resources might be most useful...
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.