For Any Cancer Diagnosis
Q. I have stage 4 cancer and after 5 years of receiving chemotherapy, I'm being told there are no more treatment options for me. Because I survived so long with a terminal diagnosis, some people in my family don't seem understand how serious this is. How can I help them understand?
I am sorry that you have been told that there are no other options to treat your cancer. It seems that you have been on quite a journey over the last 5 years which likely took an incredible amount of courage and energy. It’s possible that your brave outlook allowed your family to think that the cancer would remain under control for a long time to come.
It is not uncommon for people to deny the seriousness of cancer, including people with cancer as well as their loved ones. While denial is often thought of in a negative way, it can be a useful mechanism that protects us from the sometimes intense emotional pain involved with being diagnosed with cancer. Perhaps the indifference that you see in your family members has a component of denial that has protected them in some way.
I’d recommend developing a strategy to communicate your feelings and concerns to your family. A a social worker, nurse, doctor, clergy member, or friend may help to facilitate a discussion with your family. Family members might benefit from meeting with you and one or more of these professionals to talk about your cancer as it presents currently and what the expectations are going forward. You can then begin to discuss with them what support you need.
The National Hospice and Palliative Care Organization offers practical information for those living with serious illness.
I hope that you have found this to be helpful, and I welcome you to talk further about your concerns with a CancerCare social worker.
Q. My dad has terminal cancer and he is currently at home. He has no insurance, but Medicaid is pending. We're trying to get hospice or some support. What can I do?
It must be a very difficult time for your family and you are to be commended in seeking out resources and support services that are available to assist your family.
Hospice is paid for through the Medicare or Medicaid Hospice Benefit and by most private insurers. If a person does not have coverage through Medicare, Medicaid, or a private insurance company, hospice will work with the family to make sure needed services are provided. In order to receive hospice services, your father’s doctor will need to make a referral to a local hospice provider. You may also contact a local hospice to find out what steps you should take.
The National Hospice and Palliative Care Organization (NHPCO) offers information and resources about end-of-life and hospice through its Caring Connections website. The Caregiver Resource Directory also can provide you with extensive information. We’ve created a fact sheet, Caregiving at the End of Life, that provides guidance as you care for your father.
It’s important that you continue to follow-up with his Medicaid application, as benefits will be retroactive to the date when he applied and can be used to pay any medical bills that may be incurred during the application period. CancerCare’s fact sheets, Getting to Know Your Entitlements and Sources of Financial Assistance, may also be helpful in finding resources.
If you continue to have difficulties finding hospice services for your father, please call us at 1-800-813-4673 (HOPE) to speak with an oncology social worker.
Q. My husband has advanced cancer, and he has severe pain in his lower back and legs. What does that mean?
Pain is a message your body sends saying that it needs help. Let me say that although your husband may be experiencing increased pain, this does not necessarily indicate that his cancer is becoming worse. It is very important to communicate with his medical team so they can explore this further and take appropriate action to address his pain. There are various pain medications that can offer relief. Pain management works best and is most effective when there is a team effort. The more accurately you both can describe the pain to his doctor, the better his doctor will be able to help him. Rating pain on a scale from zero (no pain) to 10 (worst pain) can be an effective way of measuring and communicating levels of pain.
To make sure he receives effective pain management:
- Tell his doctor immediately about any pain he is experiencing. NEVER allow pain to build up over time. Pain needs to be monitored and assessed at each doctor visit.
- Write down any questions you may have about his pain and how to manage it BEFORE you visit his doctor. And, be sure to write down the answers his doctor gives.
- Accompany him to his appointment. Having another person there who can give him emotional support, ask questions, and remember information can help him better address and manage his pain.
- Be specific and describe his pain in detail. Don’t assume his doctor knows how he feels. Make sure to describe in detail what his pain feels like, when it is at its worst, and when it appears to ease up, if it does.
- Keep a pain diary or journal. Record such things as when and where the pain occurs, what makes the pain worse, what provides relief, and how the pain affects his quality of life.
Remember, pain is what the person says it is. Your husband is the expert of his own pain and his medical team is there to work with you both.
You’ll find additional information in our publications:
For Breast Cancer
Q. My mother has stage 4 breast cancer and I'd like to know if she would be eligible for any clinical trials.
Whether or not a clinical trial would be an option for your mother will be determined by several factors. The guidelines that clinical trials follow state who will be able to join the study, based on the questions the research is trying to answer. Therefore, your mother’s type of cancer, as well as the stage of her disease, her age and whether she has received any prior treatment would be examples of some of the eligibility criteria that may come into play. I would encourage you and your mother to speak to her doctor about this important question, since only her doctor can determine whether a clinical trial would be appropriate.
To locate clinical trials that might be suitable for her, call the National Cancer Institute’s (NCI) Cancer Information Service at 1-800-422-6237, or you can search the NCI’s clinical trials database. If you need help using our clinical trials online search form, read Help Using the NCI Clinical Trials Search Form.
In addition, NCI’s Clinical Trials: Questions and Answers fact sheet includes information about types of clinical trials, who sponsors them, how they are conducted, how participants are protected, and who pays for the patient care costs associated with a clinical trial. It also includes some questions people might ask their health care provider before entering a clinical trial.
CancerCare’s clinical trials publications are also excellent resources.
Q. I am 67 years old and have had non-Hodgkin's lymphoma for 7 years. I have decided not to receive further treatment. What will happen as I progress? Will I have pain?
You have made a difficult decision to change the focus of your treatment from curative to palliative. No doubt this decision was made after careful consideration and consultation with your doctors and members of your support team.
Most people report that they are not as fearful about dying as they are about the possibility of experiencing pain and distress. There are many ways to address physical pain and you can learn specific ways to describe your pain to your treatment team in our booklet, Controlling Cancer Pain: What You Need to Know to Get Relief.
Palliative care may be available through your local treatment center, or may be accessed through hospice. Palliative care and hospice services are provided by medical professionals who have an expertise in managing symptoms, social workers who provide support you and your family, and chaplains who provide spiritual care. Getting to know your team of health care professionals early after you decide to pursue palliative treatment will allow them to get to know you and your preferences, as well as how you respond to pain management techniques. The National Hospice and Palliative Care Organization’s Caring Connections website offers information about living with a serious illness and pain management. We offer a fact sheet, Your Health Care Team: Your Doctor is Only the Beginning, that outlines professionals who may be available to help you.
Hospice care recognizes that for some people with cancer, a cure is not possible. The focus of hospice services is to create the best quality of life for a patient by treating his or her physical, emotional, and spiritual needs, as well as supporting family needs.
While your care at this time is palliative in nature, the importance of hope can not be dismissed. Hope is that balance between positive attitude and expectations for the future. Hope can continue to nourish you, and you can nurture hope through the way in which you continue to live your life. Settling old problems and practical affairs will give you peace of mind. Make plans with family and friends as you are able to continue to engage in the activities that you enjoy. Focusing on the purpose and goals of each day will set up an achievable plan and completing what you can each day will give you satisfaction that you have done your best.
Q. My 90-year-old grandmother was just diagnosed with lymphoma, but was told that because it is at an advanced stage, no treatment will be done. What should we expect?
Lymphoma is the term used to describe cancer of white blood cells, called lymphocytes, which are a crucial component of the immune system. As with any cancer, there are important factors in determining a patient’s prognosis. These include the type of cancer, the stage of the cancer, the age of the patient and the patient’s general health. It is also important to consider whether the cancer is a new diagnosis or whether it has recurred.
While it is not possible to tell you exactly what to expect, it is important to begin to plan for her care. Talk with her doctor and find out more details. For guidance, please read our publications, Communicating With Your Health Care Team and Doctor, Can We Talk?.
It will be helpful to develop a plan that includes all available family, social, and medical supports to care for your grandmother in body, mind, and spirit. You may also want to discuss with your grandmother what her wishes are regarding her care. It is important to have information about your grandmother’s health insurance or other coverage she may have and what medical and supportive care services they can provide during this time. Hospice should be considered and can provide support and services if your grandmother’s needs increase.
The Leukemia & Lymphoma Society provides specific information about lymphoma and offers support services provided through their local chapters.
For Ovarian Cancer
Q. I've been diagnosed with advanced ovarian cancer and I'd like to connect with others who are also in an advanced stage. Where should I look?
Sharing one’s feelings and learning how others cope in similar circumstances can provide you with a community of strength and guidance.
Here are my suggestions for finding a group:
CancerCare offers face-to-face, telephone, and online support groups that are led by professional oncology social workers.
The Association of Cancer Online Resources (ACOR) offers both ovarian and gynecologic cancer “listservs.” A listserv is a group that communicates through email. After you join (or “subscribe”) you will receive emails from others who post messages that are sent to everyone in the group. These groups often have a large number of members, so it is likely you can find others with a similar diagnosis to yours.
SHARE (Self-Help for Women with Breast or Ovarian Cancer) has a toll-free hotline, 1-866-891-2392, and can help you find local support groups.
Cancer Hope Network connects people with similar diagnoses for support and guidance.