For Any Cancer Diagnosis
Q. I've finished treatment and now I feel like I'm on my own. Are there things I should be doing?
Finishing cancer treatment often brings mixed feelings. A sense of relief and feelings of accomplishment are normal; so, too, is uncertainty about the future. Your instinct to prepare in some way for your survivorship is a good one. Here are some steps you can take to keep both your mind and your body healthy as you continue to work with your medical team.
Ask your doctor for a Treatment Summary. This should include:
- Your type(s) of cancer with the date and stage at diagnosis
- Types of treatment received (surgery, chemotherapy drugs, radiation doses and tests performed)
- Complications experienced (side effects, transfusions, hospitalizations)
- Other services used (physical therapy, acupuncture, herbal)
Discuss with your doctor what your Follow-Up Plan will be. This should include:
- Future schedule of visits (time and date)
- Who will deliver follow-up care (and where)
- Tests that will be done and why (surveillance and preventative)
- Assessment and treatment for long- or late-term effects (e.g., lymphedema, depression, pain)
- Evaluation of current health behaviors and promotion of healthy life style
There are great resources available that can help you organize all of the above information. The Lance Armstrong Foundation (LAF) has developed worksheets and a Survivorship Notebook. The National Coalition for Cancer Survivorship (NCCS) provides information about Living Beyond Cancer. And for childhood cancer survivors, the National Children’s Cancer Society offers information in managing long-term effects from treatment.
You mentioned feeling “on your own” now that your treatment is complete. This is a common feeling when treatment ends, and it’s good to know about the different types of support available to you:
- Professional support provides you with information, resources and counseling
- Peer-to-Peer support reduces your sense of isolation and helps you connect with others who share similar concerns
Finally, you might find it useful to listen to these Connect® Education Workshops:
Q. I've been trying to get back to normal after ending treatment, but I'm having some trouble. Everyone is happy that I'm back to work, but I'm not sure I am. Why am I feeling this way and what should I do?
With the end of treatment often comes the expectation that it’s time for celebration, and for things to go back to how they used to be. Yet, it’s common for many people to feel lost, uncertain and confused about how to move forward. Friends and family usually mean well, but they might not be fully aware of the feelings that can surface after treatment is over.
Often times after treatment ends, people find themselves reevaluating their lives. This could mean reassessing relationships or professional goals, and discovering new ways of finding meaning and fulfillment. Moreover, you might not be fully ready to be back to work, whether emotionally or physically.
Newly diagnosed patients can be so busy learning about their diagnosis, working with their medical team, and going through treatment, that the emotional impact of the diagnosis is not fully felt until treatment has ended. Understanding what life after cancer means to you can take time. This process may involve reflecting on what you’ve been through, identifying changes you might want to make in your life and recognizing what you’ve learned about yourself.
Remember that support groups are not only for people in active treatment. You might find the feelings you’re having right now are better understood by people who’ve “been there” and are currently facing similar issues such as fear of recurrence, living with uncertainty, lingering side effects, and going back to work. You might also find individual counseling helpful.
If you have concerns about how your feelings, both emotional and physical, are affecting your daily life, speak with your doctor or a counselor for support and additional guidance.
Q. How can a cancer survivor deal with fear of recurrence?
Many feelings can come up once cancer treatment ends. On the one hand, it is a time of hope and relief, but it can also be a time of fear and anxiety. Fear of recurrence is not at all uncommon for cancer survivors and you are not alone. Take control of the things you are able to. Everyone has their own way of coping, but here are a few practical suggestions:
- Take care of yourself by making healthy choices which may include increasing physical activity and adjusting your diet. Engage in activities such as yoga, meditation, or other relaxation techniques.
- Seek out support. Speaking with others in a support group can help relieve anxiety.
- Explore spiritual connections. Read our fact sheet, Strengthening the Spirit.
- Stay active in your follow-up care by asking specific questions.
Questions to ask your doctor about recurrence:
- What is the likelihood that my cancer may return?
- Are there any steps I can take to keep it from returning?
- How can I know if it’s back? Are there things I should I look for?
- What tests will I have that could detect a recurrence? How often should I be tested?
Other resources include:
- CancerCare’s podcast, Finding Hope and Meaning After Treatment
- The National Coalition for Cancer Survivorship’s Cancer Survival Toolbox
Finally, expressing your feelings to a counselor one-on-one in a nurturing environment can be helpful. The process of openly coping with emotions helps many people feel less anxious. You may also join a post-treatment support group to learn how others cope with fear of recurrence.
Q. I'm a cancer survivor and am wondering if I should seek counseling now that my treatment has ended?
The decision to pursue counseling is always very personal. As a post-treatment cancer survivor, you may be dealing with concerns that are different than those you had at the time of your initial diagnosis. The post-treatment phase may be a time to reevaluate purpose, direction, and priorities. We know that many cancer survivors have fears of recurrence and other anxieties that friends and loved ones may not fully understand. Speaking with a counselor can help.
CancerCare offers a number of ways to get support including counseling and support groups. A support group provides a safe place for people coping with similar issues to share and learn from each other. Many people find the opportunity to relate to others in this way enormously helpful and powerful.
You may also want to listen to our Connect Education Workshop, Managing the Stress of Survivorship.
Going forward, keep in mind that taking care of yourself emotionally is equally as important as looking after your physical needs.
Q. My dad was diagnosed with cancer last month. He and my mother live in another state, and I have a family of my own so I can't be there to help them out on a daily basis. What can I do to support them from far away?
It is difficult when we want to be there for our loved ones but can’t. We can feel helpless and “out of the loop.” However, there are ways to help, even from a distance. Here are some useful tips:
Help your parents with medical matters. Make sure your parents communicate regularly with your father’s doctor and that all their questions and concerns are being addressed. Ask your parents to sign a consent form allowing the doctor to share information with you in case you need to intervene on their behalf. If your parents are uncomfortable asking questions, send them a copy of CancerCare’s publications, Communicating With Your Health Care Team and Doctor, Can We Talk?.
Offer to help your parents with practical issues such as paying bills or making calls to their insurance company. Research information on resources and services for people with cancer. Volunteer to be the one to keep family and friends up-to-date on your dad’s condition, so that your parents don’t have to make so many calls and tell the story over and over. If your parents resist this kind of help, let them know that it would help you to help them. They are more likely to accept the assistance if they know it is helping you manage.
Give them emotional support. They will welcome your regular telephone calls and cards that let them know you are thinking of them and share what’s going on in your life. You many also want to suggest that they find additional emotional support through individual counseling or support groups.
Take care of yourself and your own family. People with cancer often worry about the impact their diagnosis has on their loved ones. You can ease your parents' concerns by seeking out the same kind of emotional and practical help you want for them. Having your own life under control and your own family cared for will allow you to better support your parents and their needs.
For more information, the Family Caregiver Alliance offers a Handbook for Long-Distance Caregivers.
For Breast Cancer
Q. I was diagnosed with DCIS last year and my family's reaction has been "it's not really cancer". It hurts me that during my biopsies, lumpectomies and radiation, no one asked how I was doing. How do I get over the disappointment with my family and manage the stress of my own diagnosis?
Ductal carcinoma in situ (DCIS) is an early noninvasive form of breast cancer in which abnormal cells multiply and form a growth within a milk ducts of the breast. The term “noninvasive” means that the abnormal cells have not spread out of the milk duct into other parts of the breast. DCIS is normally found during a mammogram and confirmed by a biopsy. If left untreated, it is more likely to develop into invasive breast cancer so it is important to seek treatment.
During times of crisis such as health emergencies it is not unusual for friends, family members and loved ones to react in unexpected ways. Based on what you have shared, it sounds like your family’s response was unsympathetic and hurtful. Often times, loved ones think that they should only be positive or always look on the bright side. This can leave the patient feeling unsupported and unable to express his or her true feelings. I’m not sure if you’ve shared your feelings with your family, but sometimes people do not know what to say or do and need a little guidance.
Support groups can be an important part of overcoming your feelings of disappointment. Groups are a place where you find the support you need and feel heard and understood. Make sure to find a group that is a good fit for you; some organizations offer groups for women who’ve been diagnosed with DCIS or early stage breast cancer, including SHARE: Self-Help for Women with Breast or Ovarian Cancer.
I encourage you to be take care of yourself. You may want to explore individual counseling to work through your disappointment and stress. Learn more about counseling.
For Colorectal Cancer
Q. My mother was diagnosed with stage 3 colon cancer and I'm worried she is pulling away from those who care about her. I think it might be good for her to talk to others who've been diagnosed to get some guidance. Where should she go?
Your question is a good example of how a cancer diagnosis affects the entire family, not just the loved one who was diagnosed. Both caregivers and patients share similar challenges, although with different perspectives. Speaking with people in a similar situation can often be helpful. Many hospitals offer support groups, so I would begin your search by speaking with a hospital social worker who can let you know about available support groups. If you are having difficulty finding local face-to-face support groups or if traveling is difficult, CancerCare offers both telephone and online support groups for colorectal cancer patients and for caregivers.
There are additional organizations that offer support groups, information on how to connect with a local support group, or “buddy” matching programs:
- Colon Cancer Alliance
- American Cancer Society
- The Cancer Support Community
- United Ostomy Associations of America
We know that “one size does not fit all,” and it’s important to determine the type of support services most beneficial to the person in need. A support group can be helpful, and often individual counseling may be more appropriate. Introduce this information to your mom and allow her to ask questions and share her decision with you. And don’t forget to consider support for yourself. Our support group participants tell us they are glad they took the chance to connect with others, and report that they now have a greater understanding of their treatment, side-effects, options, medications, and emotions.
Q. I live in Queens, New York and my brother who has stage 4 colon cancer lives in Canada. I am one of his caregivers and he will be with me in New York for two weeks soon. Is there any way I can get counseling for him? He is depressed and has not coped well with his diagnosis.
It is very difficult to be a long distance caregiver. I can sense that you really want to be there for your brother but are finding it hard to know exactly how. Loss of control is something that goes hand in hand with a cancer diagnosis. Sometimes it even feels that the cancer is making the decisions. It is certainly making things more difficult. CancerCare has a staff of professional oncology social workers who can provide counseling and support to both you and your brother. Please call us at 800-813-4673 to schedule an appointment. CancerCare also offers online and telephone support groups specifically for patients and caregivers.
Caregiving is a heavy burden and it is easy to put your loved one first. But thinking about your needs as well will make you a better and more able caregiver. CancerCare offers publications on our website that will help you understand the demands of caregiving and how to be prepared and ready: “Caring Advice for Caregivers: How Can You Help Yourself?” and Caregiving for Your Loved One With Cancer. Another resource is our free Connect Education Workshop™: Stress Management for Caregivers: Taking Care of Yourself Physically and Emotionally.
Family Caregiver Alliance is an organization that focuses solely on the needs of caregivers. They offer many resources on their website including the section, Caregiving Info & Advice, various publications and fact sheets, and educational webinars such as Caregiving 101: Exploring the Complexities of Family Caregiving.
The Caregiver Resource Directory includes chapters about symptom management at home and the goals of care in progressive illness.
Another helpful resource is the American Society of Clinical Oncology’s publication, Advanced Cancer Care Planning: What Patients and Families Need to Know About Their Choices When Facing a Serious Illness, which may be downloaded from their website or ordered free of charge.
And finally, the Colorectal Cancer Association of Canada website has many resources that could be helpful for your brother.
For Ovarian Cancer
Q. I was diagnosed a few years ago with ovarian cancer and have finished my treatment, but now I'm afraid of recurrence. Is this normal?
After a diagnosis of ovarian cancer, a woman can feel vulnerable and experience a lot of uncertainty. The emotional, social and physical experience of having ovarian cancer can be overwhelming and living with this experience often leaves one with a fear of this happening again.
While your fears are typical, at times they many vary. For example, around the time of your check-up, blood tests, or when a milestones or anniversary is approaching you may feel sad, irritable, or anxious. Allowing yourself to acknowledge and accept your feelings is the first step. Developing ways to manage these feelings is extremely important and a way to be kind to yourself. An important act of kindness to yourself is to live in the now and find ways to balance your fear of recurrence with enjoying your life, and the hope for continued wellness.
Ways to manage fear of recurrence:
- Get support. Many women find comfort in a support group. Share your feelings and learn how others are coping with challenging and common fears, which can provide you with a community of strength and understanding. You can also speak with a CancerCare oncology social worker about your concerns.
- Take good care of yourself. Get enough sleep and reduce stress. Find things to do that are comforting such as meditation, yoga class, writing in a journal, or spending time with your pet. We all have activities we find soothing and it is important to develop these and do them when you need to.
- Communicate. Share your feelings with the people who are important to you. Let them know how you are, and what they can do to help. Set limits if you need to by deciding what you can commit to and what you can do another day.
For Pancreatic Cancer
Q. My son's partner was recently diagnosed with pancreatic cancer and the prognosis is not good. He is very much part of our family. Our son looks very stressed and sad and sometimes is irritable and short with me, which is very unlike him. We have talked to him about getting some help but he says no one will understand because his partner is a man. What can we do?
Your son and son-in-law are both very fortunate to have your support. People in even the most devoted and long-standing gay relationships may not get the same degree of social recognition and support as straight couples. Coping with a loved one’s cancer diagnosis can be a difficult experience and is compounded when one is the primary caregiver, as it sounds like your son may be. With much of the focus on the person with cancer, the needs of caregivers can be unintentionally overlooked and this dynamic is even more likely to be present in gay relationships. Your son is having a very normal reaction to a difficult circumstance, but I feel that the emotional changes you describe could increase without professional support. It is not unusual for gay people to be concerned about being rejected or misunderstood, but there are ways to help your son connect to mental health professionals who are sensitive and open. You can contact us and speak with an oncology social worker for support and referrals to local resources.
Another point gay partners need to consider when faced with a cancer is ensuring that certain rights are addressed and attended to proactively. Gay partners have encountered barriers to areas that others may take for granted such as hospital visitations and medical decisions. Some states address concerns such as these by recognizing domestic partnerships, but there are other measures that can provide certain protections such as having your son-in-law prepare a health care proxy, living will, or power of attorney. These documents will help facilitate communication with health care providers. To locate free legal services to help with these protections, please visit http://www.lawhelp.org.
Although you write out of concern for your son, a cancer diagnosis impacts the entire family and I hope you won’t ignore your own need for support. CancerCare services include telephone and online support groups for people with cancer and their loved ones and we also offer a number of publications.