Frequently Asked Questions
Our Director, Medical Director and Staff want to help you have the information that you need.
Some questions about cancer and its treatment, integrative oncology, complementary approaches are asked by a number of our patients. While not all questions can be answered here because they require a more personalized or tailored response, we try to answers some of these questions that we believe are important for many patients. This section represents a collection of these questions.
If you have a question you would like to ask, you may forward it to us via email. We periodically review the questions that are submitted to consider possible additions to our Frequently Asked Questions collection.
Can Black Cohosh work for menopausal symptoms after breast cancer?
Black Cohosh is a very popular herbal treatment for menopausal hot flashes, but not all of the literature shows a benefit. In part, this is due to two factors. First, lots of different formulations have been used and they are not all equally “good.” We have chosen a formulation of Black Cohosh to sell in Reflections which has been shown to be safe and effective in treating menopause. Second, the dose and length of time used can affect a good response. Therapies like herbs and dietary supplements are not like drugs. They usually take longer to work and are milder. For Black Cohosh, it may take as long as 12 weeks to see the full effect. Since therapy should be tailored to the individual and will always involve more than just one remedy, we also recommend that you come to one of our groups or get an individual assessment to help with your menopause wellness plan.
Supplements are not regulated by the FDA, does that matter?
Actually, supplements ARE regulated by the FDA, however, not in the same manner that drugs are regulated. Supplements are assumed to be safe, unless evidence to the contrary is found. Quality control of dietary supplements (herbs, vitamins etc.) is under the jurisdiction of the FDA. New rules to ensure a consistent quality standard were passed last year and will be implemented over the next several years. These standards are supposed to be implemented by 2010. The United States industry is not regulated to the same standard as Europe, where herbs in particular are treated like weak drugs, but fortunately, the higher quality companies already meet or exceed current US standards. Some products, manufactured in Europe, meet their drug type standard and are beginning to be sold in the US. Awareness of the potential variability in product quality was a major factor in selecting a small number of good quality products to be sold in the Reflections, our boutique for patients with cancer,[link] in order to make sure that people had a good choice available to them.
How do you know that your supplements contain what it says it does?
We personally do not test products ourselves, so we do the next best thing. We have identified companies with very good quality assurance programs and we buy from those companies. Having confidence that what is on the label is what is in the bottle is a key factor for safety and efficacy.
Is fish oil good for you?
Fish oil has been shown in a number of studies to have health benefits. Regular consumption of fish oil has been shown to lower triglycerides, lower blood pressure and prevent additional cardiac problems once you already have heart disease. Some studies have also shown benefit for rheumatoid arthritis and maybe to reduce the toxic effects of drugs used during organ transplants. It probably does not decrease the risk of cancer, but it is recommended for people with cancer to help maintain lean body mass and decrease inflammation.
Will my supplements interfere with my cancer treatment (chemotherapy or radiation)?
This is a complicated and sometimes controversial question. Most conventional oncologists discourage the use of supplements during cancer care for fear that interactions will occur. Some products would not be recommended because they could contribute to cancer growth (estrogenic herbs with estrogen sensitive tumors for example). Other products actually help reduce the toxic side effects of chemotherapy, for example, and should be encouraged. Add to this the complicating factors of correct dosage and identifying high quality products and you can see why this is a process that requires expert and individualized guidance.
Do you think organic foods are important?
People have become concerned that the pesticides and other chemicals used in our food chain have increased our exposure to chemicals which are detrimental to our health. This concern seems to make sense in a basic way even if there has not been clear cut data to prove it yet. Also, early data is also suggesting that organic foods may have more nutrients than foods grown conventionally. We ask most people to choose organic as a routine choice at home and to be aware of which foods are less likely to be contaminated when they are eating out. Some contaminants, like mercury, are so common in fish, that we actually identify resources that help you choose fish which are least likely to be contaminated. Once people have cancer and are having to deal with all of the medications, it makes sense to take out any additional stress on the system by eating organic. It also looks like it will be more nutritious for us and better for the planet as well.
I’ve heard that relaxation techniques, meditation and mindfulness can help reduce anxiety about cancer treatment. Is that really true?
Yes. Many mind-body techniques that utilize forms of relaxation training can be helpful in reducing a wide range of symptoms and experiences. These techniques help you to cope with stressful situations, provide some sense of control in an otherwise “out of control” experience. They often lower physiological arousal which helps you to feel less overwhelmed and anxious. We encourage all patients and caregivers to learn at least one relaxation strategy to use throughout the cancer experience. It can include deep breathing, progressive muscle relaxation that involves tightening and then relaxing muscle groups, guided imagery and meditation practices. There is evidence that these techniques reduce anxiety, depression and improve overall well-being. The good part about these techniques is that they have no side effects and they will not interact with your other medications or treatment. In addition, there are indications that they help reduce the effects of stress which may have long term implications for other illness and symptoms. Take a deep breath, close your eyes and release your breath in a long exhale; say the words “relax….relax…” as you do this. Allow your breathing to become slowed down, rhythmic and try another one of these deep breaths followed by the exhale. You can often find groups or classes to teach these mind-body techniques. Note relaxation and mindful meditation are not the same, but they may both bring about a relaxation response. Each may have some of its own benefits as well.
I had surgery, chemotherapy and radiation for my cancer and now I feel very upset every time I have to go back to the doctor. What should I do?
Many patients feel a stress response when they confront situations that are reminders of their cancer treatment. This happens more frequently than you might think. Sometimes that stress response feels like “butterflies” in your stomach, anxiety, worry, sadness, heart pounding or a desire to just avoid everything medical. You may be experiencing some symptoms that are called post-traumatic stress disorder. Usually you need a variety of symptoms in three different categories to receive such a diagnosis, however, there is a growing body of literature that indicates that people who have been treated for cancer often develop some of these symptoms. There is a wide range depending on the study, but as many as 80% of patients may have some of these symptoms. It is important to seek some assistance from an oncology social worker or health psychologist to assess the severity of the difficulties. Cognitive behavioral therapeutic interventions can be very helpful in allowing you to reframe the experience and develop coping strategies. It is very important that these symptoms do not deter you from seeking your follow-up care. If you begin avoiding, then you need to seek treatment from a qualified behavioral health psychologist immediately. Learning relaxation or meditation techniques can be helpful for some people who are then able to employ those techniques when they come to medical appointments. Just remember, you are not alone, and that interventions may be helpful to you so that you do not feel so overwhelmed and upset. Sometimes the more traumatic your cancer treatment was for you, the more likely you are to develop these difficulties. We recognize that optimizing your post treatment wellness includes attention to your psychological well being in addition to your physical well being.
My daughter, who is 20, has just been diagnosed with breast cancer. What can I do to help?
There is a lot to be done from a psychological perspective. You need to first make sure that she has had more than one opinion and that she is getting the best conventional medical care from a comprehensive cancer center that provides care to patients with breast cancer. She needs a well thought out treatment plan that reflects the best evidence based medicine. You want a treatment center that has seen other young women as this is not that common.
Given that she is 20 years old, she will be dealing with a lot of issues that are common to other women with breast cancer, but some issues are unique to her because of her age.
Most likely, she still has many developmental issues. As a mom, the kinds of things you want to be able to do are to be sensitive to the issues she is struggling with. Good communication is also an important part of good psychological support. Communication needs to be two-way, involving both listening as well as talking and providing information. Getting involved in a support group for young women could be especially helpful to your daughter. Please read our article related to “Cancer in Young Adults.” There are also resources on the web and in our links section oriented toward young adults with cancer.
How would a woman who is 20 go about finding the right support group?
Generally, to find a support group, one would look to organizations in her community, like the American Cancer Society or the hospital where she is receiving treatment. For someone in her 20s, it would be important to make some telephone calls to the facilitators of any support groups to determine whether there are people in the group close to her age. People who face cancer in their early 20s have somewhat different life issues than people facing cancer in the fifth and sixth decades of their lives.
The young people are usually not established in their careers, and image and sexuality as well as fertility are significant issues. It becomes important for them to be able to share these experiences with other young women like themselves.
The whole group does not have to be made up of young women. If there is one other young woman in the group, it may help to diminish the sense of aloneness that this young woman might feel. Women who are much older can also be very supportive; there are some aspects of breast cancer or any cancer that are common to this experience whatever one's age.
Cancer affects the entire family, not just the patient, and it is really important that family members have a place to talk about their experiences and to be able to talk to each other about their concerns and feelings.
How can parents of children talk to them about their diagnosis?
The most important aspect of communication is making sure that you are honest and open. All of the discussions about diagnosis must be directed at maintaining and continuing to build trust in the relationship. It is the foundation that makes children feel secure. In communicating with children, there needs to be a two-way process in which a parent both talks and listens to what the child is experiencing.
How much you tell children and the level of detail provided should be dependent on the age of the child. Younger children need less detail and more mature older children need more factual information. The important thing is that children can depend on you to answer their questions and that those answers are always honest. Many times young children need reassurance that they will be cared for no matter what is happening medically. Being able to reassure them who will be there for them when treatment is happening can be very reassuring.
We encourage parents to seek out consultation from a psychologist of oncology social worker who understands the developmental needs of children. They can often provide assistance to parents as they try to figure out the best time, the words and how much information to provide. We believe that helping parents to communicate effectively with their children about cancer, its treatment and its impact on families is the best way to help children.
Sometimes children may need other people to talk to than their parents about the cancer diagnosis and treatment, and there are support groups that can be helpful to children. Such support groups are often grouped by age. Joining a support group is a personal decision. Most individuals who join support groups find them helpful.
How important is it to join a support group after treatment?
After treatment is a particularly good time to join a support group because many people experience some degree of anxiety as their medical treatments wind down and they begin to re-enter a life that is not dictated by weekly visits to a medical center. After treatment support groups are often labeled "survivor groups" (although we call them "Looking Ahead") and are often made up of individuals with no evidence of disease who are no longer having treatment. These groups tend to deal with issues related to fear of recurrence, returning to work, family life returning to normal, but also the ongoing distress that many people continue to have even though their cancer has been treated. Patients often find that, when the treatment is over, friends and family are ready to put the experience behind them, but many patients/survivors still have ongoing concerns that they need to talk about. After-treatment support groups provide a good place to do that.
What should I look for in a support group?
When looking for a support group, one should inquire about the eligibility criteria for joining the group. Try to determine if the group is likely to attract people who have a similar diagnosis and stage of cancer. You might ask whether the group is limited to people who are currently off-treatment and disease-free or whether it is for patients who are being treated for cancer. Practical questions are also important including how often the group meets, when it meets and where it meets. These can be important considerations so it doesn't disrupt the return to work or normal life activities. Also look at the credentials of the person who is running the group. Are they licensed therapists? Do they have experience working in the area of cancer? There are many different kinds of group experiences. We have several articles in our archives "From the Director" and in our section on groups that discuss some of these issues.
As a six-year survivor I would like to know WHEN I can put the experience behind me? It seems as though I will never really be "out of the woods?"
After a person is diagnosed with cancer it is common to continue to have concerns about cancer recurrence. Some cancers have a greater likelihood of recurrence than others and thus each patient and diagnosis must be considered individually. Each person has varying degrees of tolerance for the anxiety associated with recurrence. As time goes on, many people begin to feel more and more “out of the woods.” That being said, there is considerable variability. It may be helpful to see cancer as a process and that part of this process involves cancer moving into the foreground at times such as when tests are done or even when your body has other symptoms such as aches and pains. However, there also are times when cancer moves to the background and other parts of a person’s life is more in the foreground. Once you have been diagnosed with cancer, it becomes part of the fabric of your life. We encourage people to learn from the cancer experience, to find the silver lining, and to use cancer to move forward in a way that is conscious and helpful to them. Often cancer survivors find, -- and research documents this -- that they live life more fully, with a greater appreciation of family and friends, a deeper commitment to living, and a greater empathy for individuals who have difficult circumstances in their lives. These lessons often enrich their lives and allow them to find deeper meaning. Unfortunately, most people would not choose to have cancer as a way to find appreciation.
I have worry about lymphedema; can you talk about this?
The concern about lymphedema is legitimate, and it causes some degree of anxiety for many breast cancer survivors. Many patients who develop lymphedema after they have had curative treatment for breast cancer feel a great sense of disappointment because they thought they were finished with breast cancer. The treatment for lymphedema has to be managed like a chronic illness.
It often requires multiple kinds of management; a special kind of massage, bandaging, compression sleeves etc. These ongoing treatments have psychological implications because they make breast cancer a continued presence in their lives. They can also represent a loss of freedom because these women cannot operate on a day-to-day basis without reminders or activities related to breast cancer, such as wearing a compression sleeve 24 hours. Often patients find it helpful to talk to other people who are also dealing with lymphedema in order to share the ways they manage it as well as the sadness and frustrations of dealing with it. Despite these concerns, many women live very comfortable lives with lymphedema. It is important to get it diagnosed early by someone competent to treat it.
Patients with breast cancer are not the only people who develop lymphedema. Others who have had surgery or radiation in which lymph nodes and systems have been disrupted are also at a higher risk as well. The National Lymphedema Association is a good resource to help people evaluate possible ways to prevent lymphedema, identify it’s early signs and what to look for in treatment.
Sometimes I feel overwhelmed with everyone's ideas about what I should be doing to get rid of my cancer. Do you have any suggestions for me?
A lot of times when someone is diagnosed with cancer or has a cancer recurrence, there is a need on the part of the people in the support environment to be helpful. One way that people think they are being helpful is to give advice and suggestions. While this may be important at times, it can also be overwhelming. It is important for patients to know that they do not have to follow everyone's advice and that it is okay to disregard assistance that does not seem helpful. Often times, people want to share things they have heard about cancer in the news paper, the Internet, or through friends and family who were diagnosed. All information is not equally good, and if you feel like you are being overwhelmed, look for ways to communicate to those around you that they need to stop overwhelming you. This can be done in a pleasant way. Sometimes it is hard to know what ideas to accept from others, especially when it comes to complementary approaches. This is a common concern that patients and family members struggle with during cancer treatment and beyond. We developed an educational program here at our Center with an integrative medicine physician in part to help people become informed and to make decisions that have the greatest likelihood of helping with the least financial burden. In addition, we want to help patients to be safe in the choices that they make so that whatever decisions they make they do not compromise their conventional treatment and do not create additional toxicities.
I feel vain when I tell people this, but I am really having a hard time with losing my hair. I start to cry every time I look in the mirror. What can I do?
The physical appearance changes brought about by cancer are extremely powerful. Chemotherapy or radiation can cause hair loss. For many patients, this is the straw that breaks the camel's back because it becomes the tangible sign that cancer has significantly changed them. The crying represents the sadness about the many losses that have come with the cancer experience. This is a common experience and it is not vanity. It is important to acknowledge the loss and allow yourself to grieve. There are also many things you can do to improve your physical appearance that will get you through this difficult time. Check out the section under Reflections to identify some of the solutions. Attend a “Look Good, Feel Better” program co-sponsored with the American Cancer Society in your area. There are many resources of wigs, hats, and scarves that can assist you during this temporary and difficult time.
My friend was just diagnosed with cancer, what can I do to help?
There are many things that you can do as a friend, and the most important is being available to help from very concrete issues to being a good listener for the more difficult psychological concerns. Be present by offering to do specific tasks such as make meals, transportation, grocery shopping, and childcare if there are children. Be available as a distraction for the patient by being available to engage in recreational activities, but keep in mind what physical challenges may be present from the cancer diagnosis and treatment. Use your best listening skills to hear the many concerns. Be careful that while you are listening that you do not slip into advice giving. Many patients find themselves overwhelmed by well-intentioned friends who have a solution for every problem. Avoid telling your friend to call if they need help. Instead, make a specific offer such as, “Can I bring dinner for you and your family?” “Would you like me to take you to one of your treatments?” Remember, presence matters!
I feel guilty having a good time since our family started dealing with cancer, what can I do?
Cancer is a serious illness that requires serious treatment; however, maintaining psychological well being is an important part of the healing experience. One's psychological state can be affected by engagement in positive activities and joyful activities. It is important to try to segment life and find opportunities to have some fun. If feelings of guilt begin to enter the picture try to figure out where they are coming from. Many people think that if they are having fun, then they aren't taking cancer seriously. Being able to talk to yourself and reassure yourself that having some good times are both important and necessary for the well being of the patient and his/her family sometimes helps to alleviate the guilt. Try to let go of guilt and enjoy what positive activities and feelings you can create. Remember, while dealing with cancer, you are still trying to optimize your wellness and that includes both psychological and physical wellness.
What can I do to help my children and grandchildren remember me?
We are all going to die at some point, however, for some of us, the knowledge that it will be sooner becomes more present with a cancer diagnosis. In recognizing this, we begin to grieve before the loss. A significant loss is of the relationships that are important to us. We grieve for our loss and for those who will survive without us. One fear is that we will not be remembered and that we will not be present for important events. Many people engage in activities to preserve their presence in the lives of others by preparing special things prior to their death. This is an excellent way to work through one's own grief, but also to do something for your survivors. Letters are a very important way to do this. Write letters to those you love for special birthdays or anniversaries. For example, if the children are young, write a letter for the special times that you know (or fear) you will miss, 16th birthday, 21st birthday, marriage, starting college. Letters do not have to be just for those who are young. Even adult children appreciate having these pieces of their parents on special occasions. Consider writing a letter just reminding them of how much you love them and what you like most about them. Communicate your values. Memory books of special times spent together with little notes and pictures can also be ways to leave something special behind. There are endless ways to leave mementos with meaning. One of the greatest barriers that many people face is recognizing that it is time to do these things. It's good advice for everyone, but especially those facing illness. If you live past those events, you can still share these letters and they will be appreciated whether you are here or not. It is the ultimate gift within your control.
My doctor has told me there are no more treatment options available to me. I am afraid of what will happen next, and that I will be forgotten. What can I do to prepare for the future and make the most of whatever time I may have left?
This can be a scary time for patients and their families because it means that end of life issues are placed on the table in a way that they cannot be ignored. It becomes an opportunity and there are a number of ways to prepare. If you haven’t already done so, begin by preparing an Advance Healthcare Directive, also known as a Living Will or Durable Power of Attorney. This allows you to name a surrogate decision-maker to act on your behalf if you become unable to speak for yourself, and helps you make your wishes known to anyone providing care to you. Social workers or chaplains are employed in most medical settings to assist those interested in completing directives.
Hospice may be an appropriate resource for you and your family. Hospice serves patients with a terminal illness resulting in a life expectancy of six months or less, as determined by the patient’s physician. It provides support to the patient’s family as well. Care is provided regardless of diagnosis or ability to pay. The hospice philosophy recognizes that every person deserves to live out his or her life with respect and dignity, alert and free of pain, and in an environment that promotes quality of life, usually at home or in a home-like setting. Most agencies will complete an evaluation at no charge and, once you enroll, they will use their specialized skills to advocate on your behalf to assure your comfort and dignity. Ask your doctor or other healthcare providers if hospice is appropriate for you.
There are several books that you might find helpful. “Dying Well: the Prospect of Growth at the End of Life” by Dr. Ira Byock, and “Final Gifts” by Callahan and Kelley, two hospice nurses, both convey stories of the important living that continues in one’s final days.
Whether or not you qualify for or choose hospice, this is a time to focus on what is important to you, and to complete any “unfinished business.” Tell those close to you that you love them, and prepare to say goodbye. Ask for and provide forgiveness where it is needed. Say thank you. Focus on important activities and on what you need. Tell your loved ones about your life. Talking helps make sense of who we are and where we have been.