Ask-the-Expert Online Conference
The Ask-the-Expert Online Conference called Tackling Fear featured Lillie Shockney, R.N., B.S., M.A.S., Marisa Weiss, M.D. and moderator Gwen Darien, Editor-in-Chief, MAMM Magazine, answering your questions about how to manage breast cancer fears.
Editor's Note: This conference took place in June 2001.
Questions from this conference
- Finding the best treatment for you?
- Will "chemo brain" go away?
- Does lump in breast increase cancer risk?
- Too young to have breast cancer?
- Limits to how much radiation received?
- What to do about extreme emotions?
- Breast cancer increases ovarian cancer risk?
- Harder to find cancer second time?
- Not taking tamoxifen, yet fear recurrence?
- Wrong treatment option causes unrest?
- Dealing with others' unsettling reactions?
- Can cancer lay dormant, then metastasize?
- Healthy to put experience in the past?
- When is it right to take tamoxifen?
- How to become a part of a clinical study?
- Role of environmental factors?
- Fear of recurrence ever get better?
- Controversy in tumor marker numbers?
- How to handle a coping child?
- Question from Honey: How do you yourself know this is the best treatment available, and why are there different kinds of treatment?
- Answers - Lillie Shockney, R.N., B.S., M.A.S. It's important for each of us to feel confident in the decision making made about the treatment that will be best for us. The best way to ensure that is by doing your homework and making sure that the members of the health care team taking care of you are specialists in breast cancer who diagnose and treat a large volume of women with this disease. You can also do your own research via the internet, taking a look at web sites such as the National Comprehensive Cancer Network at www.nccn.org and www.breastcancer.org, both of which provide guidelines related to breast cancer treatment. Regarding the variance in treatment protocols, treatment is based on the stage of the disease, the age of the patient at time of diagnosis, other medical conditions that she may have or have had in the past, as well as key prognostic factors based on pathology results. Combining all of that information gives health care professionals an ability to develop a treatment plan that will best suit you to give you, we hope, a long survival.
- Marisa Weiss, M.D. Sometimes there is more than one 'right way' to go. One of the advances in the care of women with breast cancer is that in a number of situations, you may be given a choice between various options that may be equally effective.
- Gwen Darien Can either of you talk a little bit about what kind of factors are used in making these choices?
- Marisa Weiss, M.D. It's very important to first take the time to 'get to know' your particular cancer and other health concerns. For example, when we get to know a cancer, we want to know all of its personality features including its size, lymph node involvement, the presence or absence of hormone receptors and specific cancer genes, its growth rate, and its involvement with blood vessels, as examples. With all of this information, taken together with your style of making decisions, your other health concerns, and practical issues, you and your doctors can arrive at the best treatment plan for you.
- Question from Pooh: Does your brain ever return to 'normal' after chemotherapy?
- Answers - Lillie Shockney, R.N., B.S., M.A.S. There is clinical research currently being done in the hopes of figuring out what 'chemo brain' is. One of the studies which Johns Hopkins is doing is looking at cognitive functioning for women during and after chemotherapy. One of the mysteries is that there are also patients who have not had chemotherapy, who are complaining of the same symptoms. That tells us that we need to do more investigation as to what could be triggering the type of memory loss and cognitive functioning that patients are describing. One theory being tossed around currently is whether or not women diagnosed and treated with breast cancer are experiencing Post-Traumatic Syndrome, similar to soldiers who have gone to war. I personally like that concept of thinking because we have all had a battle with breast cancer.
- Marisa Weiss, M.D. And during that whole battle, there have been so many disruptions in the normal rhythm and flow of your life; so many intrusions, both physical and emotional. Whenever your boat is rocked so many different times in different directions without expecting it or knowing what is next, it is not surprising that your ability to be in command of all of your thoughts and mental abilities will suffer in some way. I have had many of my patients during the course of treatment make many commitments for a particular holiday like Thanksgiving, and when the holiday arrives, they are reminded by their friends that they were to be in 5 places at once. A lot of this does get better, but your return to a life that you feel is normal requires so many adjustments. This one is a significant challenge to face.
- Question from Katdal: Last year I had a lump in my breast. Does that increase my chance of breast cancer?
- Answers - Marisa Weiss, M.D. Eight out of 10 lumps that you feel in your breast are totally benign or not cancerous. Having multiple lumps in the past requiring biopsies is associated with breasts that are somewhat hyperactive, and which may have a slightly greater tendency to misbehave. But in general, a benign lump is a benign lump. Once it is removed, it has no potential to cause other problems.
- Question from Chat: I'm 36. I feel too young to have breast cancer.
- Answers - Lillie Shockney, R.N., B.S., M.A.S. Breast cancer doesn't discriminate by age. Though the mean age for diagnosis in the US during calendar year 2000 was age 54, there are many women diagnosed in their 30s and even their 20s with breast cancer. It is understandable that you would feel caught off guard, as often times we still look at breast cancer as a disease that strikes senior citizens, not premenopausal women. There are many of us who have been diagnosed in our 30s and have done well. Having an opportunity to be involved in support groups where there are other women close to your own age can be very helpful in letting you express the anxieties and concerns that you have as a young woman facing this disease.
- Gwen Darien Lillie, can you comment on some of the concerns that are specific to young women with breast cancer?
- Lillie Shockney, R.N., B.S., M.A.S. Some of the concerns that women in their 30s have expressed focus on the desire to have a family, or continue expanding their family by having additional children. Anxiety about their sexuality — how their partner will look at them and think about them from a femininity perspective. Even a concern about job discrimination for women who are just establishing their careers, and worry that they may be passed over for promotions if individuals at work learn about their disease.
- Marisa Weiss, M.D. Most of the women in my practice tend to be younger women with children, and their whole outlook on their future — the next day, month, or year — is sort of pulled out from under them. They are hesitant to plan or assume they will be around for an extended period of time. Some of the women are single and are worried about how to meet someone, tell them that, and how to establish an intimate relationship. All of the hormonal changes that can occur with aggressive chemotherapy with young women can be difficult.
- Lillie Shockney, R.N., B.S., M.A.S. Communicating with children can also be difficult.
- Gwen Darien Can you also explain what some of the recent studies say about pregnancy after breast cancer?
Marisa Weiss, M.D.
There are a lot of issues that surround getting pregnant after you have had breast cancer. One of the questions is whether you are with someone that you feel strongly enough about to have children. Another issue is your outlook, your prognosis. Was your breast cancer reasonably favorable so that you can think of being a parent, or were you diagnosed with life-threatening cancer that will limit your ability to be a parent for an extended period of time? Other issues include whether you can get pregnant on tamoxifen. For many women whose cancers are hormone receptor positive, tamoxifen is recommended after chemotherapy. The issue of taking tamoxifen competes with a women's ability to get pregnant when she might want to.
There is also a concern that pregnancy may make your hormones go high and wild. That may threaten your health because some people worry that it may increase the risk of having breast cancer recur. What we do know is that pregnancy does not seem to increase the risk of recurrence. If you have the risk, it would be with or without pregnancy. Most doctors do recommend that you postpone childbearing until about 2 years after your diagnosis or treatment, depending on how you are treated. The idea here is that they want to get you through the highest risk period for metastatic recurrence. If you come out okay on the other side of 2 years, then your chances of doing well beyond that are much greater.
The other issue is that many women who have been diagnosed with breast cancer and want a family may be close to, or over 40, and may be anxious because there aren't many years of fertility left. Some women that I take care of have already been dealing with infertility treatments prior to diagnosis and they are concerned about the safety of using infertility drugs to stimulate ovulation and with that the hope for getting pregnant. At this time, we don't know enough about infertility medications in women who have had breast cancer. In general, doctors are conservative and don't want to take a risk with your life. Most doctors would discourage your use of infertility medication if you are having trouble getting pregnant.
- Question from Joyce: I am fearful of the amounts of radiation I receive from follow-up testing such as mammograms, bone density, bone scans, etc. Are there limits to what you can receive after radiation treatments? Also, should there be limits because of radiation received on airplane flights?
- Answers - Marisa Weiss, M.D. There are different kinds of radiation. Therapeutic radiation directed to the breast is high energy, extremely, precisely focused with very minimal scattering outside the treatment field. The kind of radiation that you experience with diagnostic tests, like mammograms (1/4 Rad is the exposure there), a bone scan, or a DEXA scan is very low energy. With current technology, there is very minimal radiation exposure here. The radiation you are exposed to in an airplane is even lower in energy and more diffuse. It is also tough to measure and depends on how long you are in flight and how high up you are. My general advice is to only get tests that you need that may help you and your doctor follow you over time to make the best treatment decisions. It's good to avoid unnecessary testing, but beyond that, I really would not worry about the additional radiation exposure.
- Gwen Darien A lot of women are concerned about potential cardiotoxicity—heart damage after radiation to the chest—after breast cancer treatment. I think the evidence is pretty inconclusive. Can you explain that?
Marisa Weiss, M.D.
Radiation is very scary stuff that we associate with natural and military disasters. With respect to the effects of radiation on the heart for women who are receiving therapeutic radiation to the left breast or chest wall area, there is a possibility that some of your heart may be in the treatment field. A very careful radiation oncologist who is meticulous and has 3-dimensional treatment planning available to him or her can do a very good job of maximizing the radiation to where it needs to go, while avoiding radiation exposure to the adjacent normal tissue like the heart. Most of the data that show a slight risk of heart damage from radiation therapy when given to the right breast area comes from old information when far less good technology was available. Today, we believe that, with very careful treatment planning by an expert in breast cancer radiation, the risk of heart damage should be completely avoidable.
It's also important to know that heart damage can occur from other forms of treatment including Adriamycin and chemotherapy, as well as Herceptin. And when some of these medications are combined together, there is the potential for more heart damage. Most doctors monitor your heart function throughout these types of chemotherapies.
- Question from Pooh: I notice you say that fear and anxiety, sadness and anger are normal. What about the individual who experiences these emotions to an extreme degree and requires more than a support group?
- Answers - Lillie Shockney, R.N., B.S., M.A.S. There certainly are individuals who do have difficulty coping and would benefit from one-on-one therapy from a psychiatrist or psychologist. There is nothing wrong with seeking out one-on-one therapy for that purpose. What is important is the individual acknowledging it to herself, whether she sees it happening to herself, or her family and friends point it out to her; then going ahead and taking the steps necessary to get help so she can psychologically cope with what is happening.
- Marisa Weiss, M.D. It's very normal to be pretty angry and pissed off about all that has happened through the breast cancer experience. Your life has been disrupted and intruded upon in so many different ways. I think it is healthy to recognize and express the complicated feelings that come with breast cancer. It's a package deal. Feelings like anger, embarrassment, shame, and guilt are all normal and can make you feel terrible inside. Many of these feelings you may be afraid to express. A support group may be one place to air some of these issues, but for sure, if you are really struggling with them, individual help can make a huge difference.
- Gwen Darien I think the other thing that is important is that there is no statute of limitations as to when these feelings go away. There is often a surge of anxiety after treatment or after the first year and your checkup is clean; years later, anxiety comes and goes, anger comes and goes, ebbs and flows. There is no right way to respond to it and you have to allow yourself to feel what you are feeling. I remember when I was in treatment with lymphoma, someone I worked with said, "She had breast cancer a year ago and she is still feeling sorry for herself." That was up there in the top 10 insensitive remarks I heard. A lot of the remarks are paradoxical when you have an anxiety attack, and you can't predict what your reactions will be, or how long you will have these feelings.
- Lillie Shockney, R.N., B.S., M.A.S. One important message from all of this is don't try to go it alone. Recruit family and friends to support you and help you. Anger that is not expressed and is subsequently turned inward will result in depression.
- Marisa Weiss, M.D. It is important to express your anger, but you do definitely have to be careful of how you direct it. I have a patient right now who is experiencing tremendous anger and it feels like a poison in her home and workplace. At the same time her husband is trying to support her, he will get an attack of anger. Together we are working through this with an experienced therapist, but you do have to be aware of the people you are with who may have trouble dealing with some of that anger.
- Question from Dee: Having had two separate and different breast cancers, I fear yet another cancer. How much does a history of breast cancer increase the risks of additional cancers, especially ovarian? When is a hysterectomy a good idea?
Marisa Weiss, M.D.
After a diagnosis of breast cancer, you feel very vulnerable. If you have been 'hit by lightening' twice, you can even feel very paranoid about it. There are several risks that you mentioned. One is the risk of the original cancer becoming a problem again. The second is the risk of a new breast cancer forming that is unrelated to the first breast cancer, either in the same breast or on the other side. That risk in general is about 1 percent per year, so at 10 years, that risk is approximately 10 percent. If you are someone who has an inherited breast cancer gene abnormality and you have had breast cancer once, your risk of developing a new breast cancer independent of the first one is approximately 3 to 5 percent per year. Of course, these are numbers in general and they can vary greatly from one person in one family to another.
A woman's risk of ovarian cancer after having had a breast cancer does depend a lot upon family history, and whether there is a breast cancer gene abnormality in the family. For these women, the risk is significant and can vary from 20 percent up to 60 percent over a lifetime, depending on your circumstances. Choosing to have prophylactic surgeries—removal of the breast, or removal of the ovaries—before cancer has a chance to occur is a complex decision that you have to make with a set of doctors and nurses who know a lot about inherited breast cancer gene abnormalities, and the role and type of these surgeries.
- Question from Honey: Is it harder to find cancer the second time, and will your treatment be different?
- Answers - Lillie Shockney, R.N., B.S., M.A.S. I have personally been down this path and know the anxiety that women experience worrying about it happening. There are two concerns for women. If she has had a lumpectomy procedure done, she is worrying whether or not the cancer will return in the conserved breast. It is common for physicians to recommend more frequent mammography, especially for the first year postoperatively, looking at 6-month intervals rather than annual intervals for screening that breast. In looking at concern about developing a breast cancer on the other side, once a woman has a diagnosis of breast cancer, radiologists routinely take extra diligence in reviewing those mammography films with the mission being to identify an early stage cancer if it were to occur. I don't think that the anxiety for a woman ever goes away once she has been confronted with a diagnosis of breast cancer. Each mammogram is another opportunity for worry, fear, and loss of sleep. I personally encourage patients to take a friend or loved one with them so that they are not alone. Recognizing that the majority of the time, they are going to get a good news report, it's still nice to have someone at your side for that support. Even for women who have had bilateral mastectomies and are no longer having mammograms done, anxiety still continues, recognizing that a small percentage of these individuals, too, will develop recurrence of breast cancer in the flap that remains post mastectomy.
- Question from Getaway Girl: It's been two and a half years since C-day. My oncologist says I'm cured and should go and live my life. I have been very aggressive in my treatments, but I am not on tamoxifen, but it scares me to think of what might happen. I don't take tamoxifen because it scares me that it's toxic as well. How do I deal with this conflict? I am 43 years old.
- Answers - Marisa Weiss, M.D. The doctors are looking for ways to reassure you in a realistic manner. The word 'cure' does express a big promise that of course, every woman would love to have. It sounds like you went through aggressive treatment with the hope that you could get rid of the cancer and never see it again. Hopefully that will happen. Over time, the fear does loom. As a patient of mine said, the fear and uncertainty can feel like a whale in your living room—it gets bigger, it gets smaller, but it refuses to leave. A big challenge of moving on with your life is figuring out how to live with that risk and those questions. Lillie, how do you advise the people that you counsel?
- Lillie Shockney, R.N., B.S., M.A.S. The patient needs to feel comfortable with the treatment. If she is taking tamoxifen, she needs to feel that it is okay to do and not feel distressed each day when she swallows that pill. We don't think patients should feel guilty if they don't take recommended treatment like tamoxifen. There are other ways that patients can help themselves and feel confident in helping to prevent it from returning. Some are not smoking, watching alcohol intake, exercising regularly, eating a healthy diet, and maintaining their regular appointments with their oncology team for follow-up evaluations.
- Question from Dee: Sometimes I worry that I should have had more treatment than was recommended (I had no radiation or chemo, taken off tamoxifen after second occurrence), especially because of strong HER2/neu readings. How do I come to peace about that?
- Answers - Lillie Shockney, R.N., B.S., M.A.S. One of the things I oftentimes say to patients is that hindsight is 20-20, but we are not going that direction; we're facing forward. What you are doing today to have yourself be as healthy as you can be should be where your focus is. We all make decisions based on the information that we have at any given time in our lives. When we make those decisions, we do it in good faith with ourselves that we have made the right choices. I encourage you not to kick yourself and wonder if you should have done more, but to pull up your boot straps and ask what you need to do today to have a healthy, good quality of life.
- Marisa Weiss, M.D. Connecting with other women can be very supportive, but don't be surprised if you speak to someone else who may have had a different diagnosis and treatment plan. Hearing about other people's choices, particularly if different from yours, can shake your confidence and raise some questions. Keep in mind that every woman's situation is uniquely different, and those differences usually explain why there are differences in how you are treated. If you have a question about your treatment, or why you did or did not get something someone else had, make sure you ask your doctor or nurse, rather than holding onto that concern.
- Question from Carol: How do I handle feeling good about my cancer recovery until I meet someone who asks me how I am, and they look at me as though I have a terrible deadly killing disease and make me feel awful when I have been told that I will be alright?
- Answers - Lillie Shockney, R.N., B.S., M.A.S. Congratulations for feeling good. I feel good too! Cancer still is a scary, scary thing. Anytime anybody hears the word 'cancer' (and probably even more 'breast cancer'), they shake in their shoes and assume the worst. It is not unusual at all for someone to look at you and assume that in a few moments you will drop dead. This is a wonderful opportunity to educate individuals such as the one you have described that breast cancer can be beaten, and that you are an example of that. Hopefully that will inspire her to get her annual mammograms, clinical breast exams, and monthly self-breast exam.
- Marisa Weiss, M.D. One of the things that I find fascinating about human nature is the need for other people to dump their fears and bad stories on you. You will find that one way people express their anxiety and concern about you—even if this doesn't seem to make much sense—is to tell you all of the bad things that they have heard about and get them off their own chests. This can be really rough. Whenever you hear someone re-tell these stories, you can stop them and say, "You know what? This is not what I need to hear right now. I am really in more of a mood for encouragement and helpful information."
- Question from Sharon: I had breast cancer 8 years ago and last year was diagnosed with metastasis to the bone. I never understood how it could lay dormant for all these years and then resurface.
- Answers - Lillie Shockney, R.N., B.S., M.A.S. I think most of us feel that if we skate through and hit the 5-year mark, we have entered a 'safe' zone. However, there really isn't a timeline for risk of recurrence. We certainly do wish that there was, so that when you hit that milestone you could be guaranteed that this disease would not revisit in your body. Often times when it recurs, we see it between the second and sixth year. However, I have a dear friend whose disease did not resurface for 21 years. One good note in looking at the 8-year span of time for you is that there have been additional clinical trials developed and effective new drugs discovered, which weren't available at the time of your original diagnosis. You are also a walking example of the importance of women maintaining their routine oncologic visits so that they can continue to be monitored, at least annually, for recurrence of breast cancer.
- Gwen Darien I think there is this idea out there that once you hit the magic 5-year mark that you don't have to worry anymore. I've had people say that it's been 5 years and 1 month, and then they get cancer back again. I think it is important to understand your risk of recurrence and that there is no magical time period. I think a lot of women feel betrayed if they get a recurrence after that magic period of time. Health care providers need to be careful with their language to patients. It is nice to live with hope, but 'cure' is a very difficult and dangerous word to use.
- Question from Dee: I find that I don't want to tell people about my breast cancer history or be involved with support groups or cancer fund raisers anymore—like I want a new 'identity' after being so involved with it for so long. Is this normal? Is it healthy?
- Answers - Gwen Darien I think it's a perfectly reasonable response. I think that no response is right or wrong; it is how you feel and respond to it. Some women find it very helpful and healing and important to be a part of an ongoing breast cancer survivor community, and some women don't want to talk about it. It is all personal choice and there is no right or wrong way to respond to it. You should not feel pressured to do fundraising or anything else. There are some women who reject the term 'survivor' and many women who don't want to talk about it. There is so much talk in the media about breast cancer that I hope women don't feel pressured to come out and talk about their experiences if it doesn't feel right to them.
- Marisa Weiss, M.D. Few of us live on our own or all alone, but a lot of us are connected to other people who are about us, which is great and absolutely necessary. It does happen, though, that within a family for example, some people want to talk about it and other people don't want to talk about it. If you decide not to talk about it ever again and your children still need to process it further, you might need to work out some sort of compromise because everyone has different needs here. They are all important and need to be respected or addressed in some way by someone. It may not be you who chooses to handle them, but differences in how people handle tough questions can make people feel isolated. Sometimes you do have to talk about these things that feel very uncomfortable.
- Gwen Darien I think Dr. Weiss has a very important point, but I also think it is important to differentiate between public discussion and discussion within the family.
- Marisa Weiss, M.D. Sure.
- Lillie Shockney, R.N., B.S., M.A.S. And there are times that women may want to take a vacation from public involvement with breast cancer initiatives to re-group for themselves, and may decide at a later time to engage in breast cancer activities out of their home.
- Question from Arlene NJ: I had a tumor less than 2 centimeters with 3 lymph nodes removed. I've had chemo and radiation. My estrogen was negative. Why is my doctor not recommending tamoxifen? I feel I need to do something for prevention. Right now, I am not on any further meds.
- Answers - Marisa Weiss, M.D. There is so much talk about tamoxifen. Most women feel a lot of pressure to take it. It really is a big commitment to take that medication for 5 years. If your cancer was without hormone receptors, then tamoxifen does not offer significant benefit to you and it has some side effects. It is true that all my patients who are without these receptors feel insecure about not having tamoxifen, but the reason why your doctor is not recommending it is because the balance of benefits and side effects don't weigh out in your favor. There are other things that you can do to take care of yourself to reduce your chance of any kind of illness. That includes eating well, maintaining a healthy weight, exercising regularly, stopping smoking, minimizing your alcohol use, and trying to reduce the stress in your life. Avoid foods with chemicals or pesticides or hormones added. Choices like that.
- Question from Elise: How does a survivor get involved with a study or a survey like the one you mentioned about Post-Traumatic Syndrome?
- Answers - Lillie Shockney, R.N., B.S., M.A.S. One source is to call 1-800-4-CANCER to find out what clinical trials are available throughout the US. You can also contact cancer centers in your geographic region and inquire as to what studies are available, letting them know specifically what your interests are; for example, a cognitive functioning study or a 'chemo brain' study, as was mentioned before. It is important that if you are pursuing this type of research to make sure it is true clinical research and not what I call 'hocus pocus' medicine. I mention that because I have breast cancer information in my personal profile on the internet, and I receive emails weekly inviting me to buy what I think is snake oil, to prevent my breast cancer from returning, or asking me to participate in a study that is not approved by the NCI.
- Gwen Darien Lillie, do you know of any current studies that are for breast cancer survivors in terms of exercise, cognitive functioning, etc.?
- Lillie Shockney, R.N., B.S., M.A.S. There was a cognitive functioning study being done at Johns Hopkins currently by Dr. Antonio C. Wolff. We have recently completed an exercise study with patients after completing chemotherapy to see about control of their symptoms of fatigue. But again, an effective way to get good information about studies such as this would be to contact the number I mentioned, or to directly call a cancer center and inquire. There certainly is an increase now in studies in the area of complementary medicine with more grant money being available for performing clinical research in this area.
- Question from Karen: Why does it seem that all kinds of women are getting breast cancer? Are environmental factors being weighted more heavily?
Lillie Shockney, R.N., B.S., M.A.S.
There really have been all kinds of women getting breast cancer for a long time. But it has only been in the last 20 years that breast cancer has come out of the closet, so we are talking about it more, reading about it more, and sharing information with one another. Also, more women are getting routine screening than ever before, which is good news. But in doing that routine screening with a larger denominator of women getting mammograms, it would make sense that a larger number of women are being diagnosed that would match the numerator.
There are a number of studies that are being completed to see if there are links to specific geographic areas of the country to see if incidence is higher than others. There are also studies on exposure to carcinogens in the environment and what influence they have on breast cancer and other types of cancer, such as prostate cancer. An article I recently read, published by Dr. Charles Cox from the H. Lee Moffit Cancer Center, showed that though the incidence of breast cancer for invasive disease reportings has remained fairly steady over the last several years, he predicts a sudden increase by the end of 2010. We are seeing an increase this year compared to last year, with numbers bumping up approximately 10,000 for the United States. His published study predicts as many as 400,000 cases of invasive breast cancer by the end of this decade. That is because of baby boomers, the largest population in the world, coming into mid life. So there will be more women with more breasts falling into the right age group for most commonly being diagnosed.
We will continue to promote screening and hopefully have even better technology for diagnosing the disease toward the end of this decade. It will be hard to go through a day in any of our lives without hearing something about breast cancer, even if we are not the ones who mention it at all.
- Question from Book Lover: Tomorrow is my six-month check up. Does the fear of recurrence ever get better?
- Answers - Lillie Shockney, R.N., B.S., M.A.S. The fear of recurrence, I feel, does get better with time. It is very similar to the loss of a loved one. Going through the first year with each milestone of a holiday can be very traumatic, but with future holidays, though the loss is still there, you start to come to grips with it. For you, about to experience your first 6 month follow up, you haven't yet gotten good news. Hopefully receiving good news, which we hope you will tomorrow, will set you on a path of feeling a bit more optimistic about your health and your body so that the following 6 months won't be quite as hard as the last 6 months were. Also, as your doctor then expands the intervals between your diagnostic evaluations, making them eventually annually, hopefully that will make it a little bit easier too. I do encourage you though to have someone go with you, someone who cares about you, because it will be very normal to be extremely nervous, to kind of hold your breath while they are doing that mammogram. All going well, it would be nice to have someone there with you when you get that good news.
- Marisa Weiss, M.D. The fear and uncertainty can get better, but there may be roller coaster rides here and there. Breast cancer awareness month can be really rough where even your yogurt container and every single TV station is featuring some story about the disease. I find that whenever and wherever you can reduce the uncertainty in your life around the breast cancer experience, you will feel much more at ease. This means getting answers to your questions sooner than later. Report your concerns and symptoms to your doctor. Don't hide them. Try to know what to expect. If you go for a mammogram and you hate waiting for the results, try to find an excellent facility that provides you with the mammogram reading on the spot. Know how to reach the people who can provide you with the answers that you need. Get phone numbers, addresses, fax numbers, emergency numbers, and email addresses as you need them, in case you need them. I also find that connecting with other people can provide you with some of the greatest support.
- Gwen Darien I think that Dr. Weiss talked about something very important, which is to report your symptoms and talk about them. Many of us tend to be the good patient. I think it is important to find a health care provider with whom you feel comfortable discussing openly your fear, symptoms, anxieties, etc. so you don't have to be a good patient with them. If it is important for you to make sure that you get the kind of response that you want when you need it, make sure you go to a center that does this. If you want to be able to call your doctor when your fear surfaces, make sure you have a doctor that is open to that. Take care of reducing your anxiety in any way that you can, usually through communication.
- Marisa Weiss, M.D. A lot of times, we are unsure of what we need. Sometimes the hardest work is figuring out what you are worried and concerned about and what you need to feel better. Once you are clear on what is bothering you, it becomes a lot easier to reach to whoever or whatever can help.
- Question from Cheryl: I hear a lot of disagreement about tumor marker numbers. Can you talk a little about this—is it something to be afraid of when I have blood work?
- Answers - Marisa Weiss, M.D. Getting tumor markers in follow-ups is controversial. Most doctors do not recommend getting these blood tumor markers over time because the study results show that finding a cancer occurrence a little bit earlier because of a tumor marker result does not result in a better outcome. Also, the tumor markers currently available for detecting breast cancer are far from perfect. You can have an abnormal marker and have no cancer present; you can also have a normal marker and have a cancer problem. What ends up happening commonly is that the markers may increase a little bit or fluctuate, and this leads to a number of additional studies then, trying to figure out where the abnormal marker might be coming from. Most of these diagnostic searches end up as wild goose chases, and with each one of these tests, there is so much anxiety in waiting for the answers and what they might show. They are also expensive. For these reasons, most doctors don't recommend them. As a doctor myself, I clearly understand why women want them—women are anxious to find a measure of how they are doing. But right now, markers are not a reliable measure that offers a significant benefit in the long run.
- Question from Deb: I have a 13-year-old son who reacts poorly (school work, etc.) every time I have a bad spell. How do I deal with this when I'm in the hospital or in bed?
- Answers - Lillie Shockney, R.N., B.S., M.A.S. Dealing with kids, particularly children who have just become teenagers, is a challenge even without a diagnosis of breast cancer. What may be happening is that your teenager needs someone to talk to who isn't necessarily a parent, but perhaps a friend or another trusted adult that he can confide in and express what is making him feel upset. I think it is very difficult for young people to see a mother or father ill. It's scary. They are worried that you may not be around. They are also worried that they may, in some way, have caused this to happen. So giving him an outlet to vent is probably the best thing that you can do for him and for you at this time.
- Marisa Weiss, M.D. Sometimes it's very easy for the people around you to mistake fatigue or the side effects of treatment for cancer recurrence or after-cancer growth. That is, you might be wiped out lying in bed after chemotherapy. If you don't tell your son that that is how you are feeling because of the treatment, he might look at you and think that you look so terrible that the cancer might be coming back. It is important to distinguish the treatment and the challenges of pushing yourself through this, from the cancer itself.
- Lillie Shockney, R.N., B.S., M.A.S. Often times we ask teens to suddenly become adults for a period of time because we want them to assume additional responsibilities around the house, whether that is watching other younger children, doing laundry, etc. This can make them angry, intruding on their time as a teen. This should be negotiated and appreciated if they are asked to step in and function in an adult world, keeping in mind that teenagers are teenagers.
- Marisa Weiss, M.D. At the same time that you might expect your kid to rise up and be the adult in a situation, they may feel the tendency to regress and act more childish because they are struggling to deal with the situation. As Lillie said, you have to give each other room to have these reactions and responses. Talking about them and helping everyone through the process of these complicated issues that can happen at the worst times can make a big difference.