This Month: Support Groups
Answered by Victoria Puzo, LCSW
Is there a support group for newly diagnosed people? I'm 55 and just diagnosed with soft tissue sarcoma on my right leg, below the knee. So many questions! How long can I keep working; how do I tell my friends and relatives; how do I tell my workmates and supervisors; how will I cope with all the medical bills?
Being newly diagnosed is a chaotic time as you’re taking in a lot of information and figuring out the details of your diagnosis and treatment plan. Joining a support group or reaching out to a peer matching program might be a good way to learn from other patients. At this time, CancerCare does not have a group for newly diagnosed patients or for sarcoma. Our support groups are offered based on demand and we have not had enough members to create these groups to be active and helpful to participants. But, I can make some suggestions to help you get connected to support and information.
First, the following organizations focus on sarcoma education, resources and support:
- Sarcoma Alliance (view their support group resources)
- Sarcoma Foundation of America (lists this as an online group option: inspire.com/groups/sarcomaconnect)
- Sarcoma Coalition
You can also try www.smartpatients.com, which offers many different groups for patients and caregivers affected by specific illnesses including sarcoma.
Peer matching is another great option to connect with another patient with a similar diagnosis. Someone who has been through this will be able to give you suggestions, answer questions and tell you what helped them during their diagnosis. I would suggest:
I also wanted to share some helpful information from our programs. CancerCare has couple of publications and workshops that cover the questions you mentioned:
Specific to sarcoma:
Managing Costs of Cancer:
You may also want to look at www.cancerandcareers.org, which can provide you with helpful suggestions about navigating the workplace and employee rights during a cancer diagnosis.
I hope these suggestions are helpful and would encourage you to reach out to CancerCare’s Hopeline at 800-813-4673. All the calls are answered by oncology social workers who can connect you with support and resources. Our hours are Mondays to Thursdays 10 a.m. - 6 p.m. EST and Fridays 10 a.m. - 5 p.m. EST.
My brother has stage IV metastatic cancer, now in his liver and abdominal wall. Are there any support groups for him?
An advanced cancer diagnosis can be overwhelming and isolating. It’s great that you’re seeking out extra support for your brother. It can be so helpful and comforting to connect with others who are going through a similar experience. CancerCare offers an online support group for patients living with metastatic, stage IV cancer. Our online groups are a convenient way to connect patients who are all looking for support and encouragement during a difficult time. The groups are password protected and moderated by an oncology social worker who will provide guidance, support and resources. If he is interested in joining this group, share this link and encourage him to register: www.cancercare.org/support_groups/194-living_with_metastatic_cancer
Answered by Other Experts
My 24-year-old son was recently diagnosed with cancer and I think it would be a good idea for him to join a support group. How do I convince him?
As a caregiver, you may feel that your son should join a support group to help him navigate the challenges he may face in regards to his diagnosis and treatment. The difficult part of all of this is that your son must be able to make that decision on his own. As a young adult facing cancer, he may need to understand what his cancer diagnosis and treatment will look like before he is able to give and get support from a group. Managing doctor’s appointments and scheduling treatments can be taxing, however addressing the benefits he may find in a support group is the first step in educating him about how a support group can help.
Support groups can offer a network of comfort and encouragement, a place of unbiased support and an environment that a young adult does not have to explain what he or she is going through because the other group members will understand. CancerCare offers a face-to-face Young Adult Patient Support Group for anyone located in the New York City area. In addition, we offer several patient online support groups. Your son may also want to reach out to Stupid Cancer, an organization that addresses several young adult cancer issues through advocacy, support and more.
As a caregiver, you may want to look into services for yourself. You can contact CancerCare’s Hopeline at 800-813-HOPE (4673) to learn more about our services for caregivers. In addition, you may find some of our publications helpful in navigating your new role as a caregiver.
I am 28 years old and it seems like I'm the only one my age with cancer. Is there anyone else like me out there?
Hearing that you have been diagnosed with cancer as a young adult can be overwhelming and isolating, however you are not alone in this. The answer to your question is yes, there are other people out there like you. There are several organizations that can help you connect with other people your age who have been diagnosed with cancer. At CancerCare, we offer services for young adults who have been diagnosed with cancer through individual counseling, either face-to-face or by phone. We also offer a Young Adult Patient Support Group for anyone between the ages of 20 to 39 who is located in the New York City area.
These organizations specialize in providing support and services to young adults with cancer and might be helpful as well:
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 LiveSTRONG Foundation 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:
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?
Being a “long distance” caregiver is a unique experience that can be especially challenging. Working to find balance between your own needs and the needs of a loved one with cancer can feel overwhelming for anyone in the caregiver role. But remember, there are many ways you can be supportive and involved in your loved one’s care regardless of the distance between you.
Offering emotional support is one of the most helpful things that you can do for your loved one. Simply checking in and letting your dad know that you are thinking him can go a long way; call, email, Skype, send a card or visit when you can. Those reminders not only show that you care, but may also leave you feeling more connected.
You can also help your parents with day-to-day tasks like managing bills, paperwork and getting organized. Similarly, you can help them navigate the medical system. Dealing with insurance companies, remembering doctors’ appointments and accessing resources can be overwhelming. You can help your family with this by taking on some of the responsibility, communicating with their doctors and nurses, and staying informed. This can alleviate some of the practical challenges for them, while keeping you in the loop.
There are also programs such as My Cancer Circle which exist to help caregivers easily enlist additional support. This online forum creates a sense of community that helps the caregiver, but also ensures that their loved ones needs are met. Family, friends and community members are often looking for ways to help: My Cancer Circle allows them to sign up for specific tasks, like cooking meals or providing transportation, which can help them feel useful and give you some respite and comfort in knowing that these needs are covered.
And lastly, it’s important that you take good care of yourself and your family. Know that there is support available to you, too. CancerCare offers free counseling and support groups that specifically address the needs of caregivers. We offer those supportive services in person, over the phone and online. These services can help you to take care of yourself and your needs, and put you in touch with other caregivers who can relate. This support can be a comforting and powerful experience, so please call us at 800-813-4673 for more information.
What are support groups and how can they help me? How do I know if they're right for me?
A cancer diagnosis can be very isolating. Regardless of whether you are a patient or a caregiver, you can be immersed in reacting and adjusting to various aspects of the disease. The responsibility to find, manage and pay for care can be hugely overwhelming. It’s hard to feel hopeful, or have any sense of confidence in your ability to cope or make appropriate decisions, if you are feeling small and powerless and very much alone in the experience.
That’s where a support group can be helpful. It provides a chance to meet and interact with other people who can understand your experience. While friends and family members might be uncomfortable, maybe feeling useless or scared, not knowing what to say or do, the members of the support group, with the guidance of a trained moderator, can be there with you in your process.
In addition to lessoning one’s sense of isolation, support groups can be a source of valuable information. Not surprisingly, members find that sharing resources and coping skills can be highly rewarding, whether on the giving or the receiving end of the transaction. Topics often include where to find reliable medical information, how to communicate with doctors, challenges of treatment and coping techniques. Much of one’s experience in a support group depends on the chemistry of who is in the group and how it is moderated. One thing common to most groups is the potential for strong emotional expression, which can be uncomfortable for some people. Other factors to consider are how you feel sharing things about yourself in a group of people, and whether or not you can meet any attendance guidelines the group might have.
Bottom line? If you are feeling alone and needing information and emotional support, a group might be a valuable way of connecting with people to help you cope with your situation. If you have questions, reach out to the moderator so you can get the information to make an informed decision.
I'd like to organize a support group for cancer survivors and people facing a cancer diagnosis. What do I need to do to get one started?
Support group has become a much broader term than many of us realize. What type of support group do you intend to start? At CancerCare, we offer three modalities of support group: including in-person, which is the format that most of us think of when we think of a support group; telephone, which is more like a weekly conference call that is moderated by an oncology social worker; and on-line, which is a message board format. Each modality has different features as well as limitations.
After deciding what modality of group will be most beneficial to your potential group members, you will also want to determine the content, structure and policies. Is your group about members sharing their experiences? Do you want an educational component with guest speakers? How often are you going to meet and where? Who is eligible to participate in the group? Who is going to moderate the group? What are the rules for discussion and maintaining privacy? What mechanisms are in place to enforce your group’s guidelines?
Familiarize yourself with existing groups. Local medical centers often offer support groups that are open to the community. Contact national advocacy organizations for specific cancer diagnoses to find out if they have a chapter where you live. Cancer Support Community has a good overview of the process of creating a support group from scratch.
I'd like more information about how to help a close friend being treated for cancer. I'm also wondering if a support group could help me too?
One of the most powerful ways to help support a friend with cancer is to be emotionally available. Providing a listening ear and an openness to talk about even the most difficult of topics can provide your friend with a real sense of comfort and give them a safe place to share whatever is on his or her mind. Know that you don’t always have to know exactly what to say; simply being present and supportive goes a long way.
Offering specific tasks may help your friend to know exactly what you can provide and when. Caregivers can be helpful in day-to-day chores like laundry and transportation, and can also help coordinate medical appointments, get to know the medical team and advocate for their loved one’s needs both health-related and otherwise. CancerCare’s publication Caregiving for Your Loved One With Cancer offers more information about how to be helpful.
Many caregivers find that support groups are helpful as they give you a space to process your own feelings and get support and insight from others who can relate. Support groups often provide practical tips on managing the tasks of caregiving, help in finding balance between caring for yourself and a loved one, and can provide a powerful level of camaraderie. Seeking support by connecting with a support group or counseling can be a healthy outlet that many caregivers appreciate and learn from. CancerCare offers free counseling and support groups for caregivers.
What are the different types of online groups I can join?
Just like support groups that meet face-to-face, there are several different kinds of support groups that “meet” on the internet. Some of these groups are offered through social media platforms like Facebook, or make use of emerging technologies like virtual reality. But traditionally and most commonly, online support groups are split into the following categories:
Chat Group – In online chat, the conversation takes place in real-time, which means that when you type in a message, the other members of the group see it instantly and can respond. A chat group is usually held at a specific time and day.
Listserv – This kind of group allows its members to email each other with questions and comments. Because emails are automatically sent to everyone on the list, the number of messages you receive each day can vary and be high at times.
Message Board – CancerCare offers this type of support group, which features a bulletin board-style forum that is accessible to members, 24 hours a day, seven days a week. Participants can write comments and questions, and read and respond to one another. A message board is usually more flexible, as members can post whenever it’s most convenient for them.
Because participating in an online group is anonymous, some people find it a bit impersonal and prefer meeting face-to-face. Other people may prefer the anonymity and feel more at ease sharing with others. That being said, one unique and positive feature of online groups is that they allow people to connect with others in similar circumstances – regardless of where they live. For instance, CancerCare’s online groups are offered by specific cancer diagnoses and populations to ensure that participants are getting support from a community of peers.
Are there support groups geared towards grandparents of a child with cancer?
While there may not be a local support group geared specifically toward grandparents of children with cancer, it is probably worth inquiring about caregiver support groups at your grandchild’s treatment center. At CancerCare, a grandparent whose grandchild has been diagnosed with cancer is eligible for any of our caregiving groups, whether in-person, over the telephone or online.
Like other caregivers, grandparents are likely to have a hard time adjusting to their grandchild’s diagnosis. You may need a place to express intense emotions, including fear, anger, sadness or grief in the presence of people who have had a similar experience. A support group can also be a place to exchange helpful information on coping and various other means of supporting oneself and one’s family.
Whether or not you find an accessible support group that specifically matches your demographic, it can be very helpful to connect with other people who care for a person with cancer. If there are no support groups in your area, perhaps you can organize an informal group that meets at a church or community senior center.
The British organization The Children’s Cancer and Leukaemia Group provides helpful information for grandparents of young children with cancer, and includes information on various ways support yourself, your children and your grandchildren in reacting and adjusting to your grandchild’s diagnosis.
I am seeking a support group for children under age 12 whose single mother is in stage 4 cancer. Please provide any available options.
You should check with the mother’s treatment center to see if they provide a children’s support group. You can also contact your local affiliate of Cancer Support Community in order to get more information about what type of children’s program they offer.
CancerCare provides a number of publications, including Helping Children Understand Cancer: Talking to Your Kids About Your Diagnosis that address helping children who have a family member with cancer. Communication is the number one priority, since even young children can often sense when something is wrong, and if no one explains what is happening, will often imagine something worse than it really is, or even blame themselves. How and how much is communicated depends on the child’s unique personality, but providing an ongoing chance for them to express themselves, asking questions and sharing their feelings, is helpful for children of all ages.
Finally, it’s important to let children know that even though some other things around the house are probably going to be different for a while, that the child’s parents/grandparents/family members love for them hasn’t changed a bit.
Recently my dad was diagnosed with cancer, and I've chosen to take on being his primary caregiver. This is a emotional and stressful experience. I am staying at their house 3 hours away from my husband and friends, making it more difficult. Every online support group is geared towards young adult spouses, and I'm one year too old to qualify. Do you know of any support groups online for my situation?
Being a primary caregiver can absolutely be an emotional and stressful experience – and in your case, made more difficult by the fact that you are also far from your husband and friends. Joining a support group is a wonderful first step in finding a community of others who “get it.” Being connected with people who understand and who are possibly facing some of the same struggles and questions can be hugely meaningful. I am so glad you’re reaching out for this kind of support and please know that we do offer an online group for you.
Our Online Young Adult Caregiver Support Group would be a great option; the majority of participants are caring for a parent just as you are. While this group and our other young adult groups are usually aimed at people between the ages of 20 and 39, we are flexible. For someone like yourself who is still so close in age and prefers this type of group, we can certainly make it available to you. To join, we do ask that you complete a short online screening to confirm that the group will meet your needs and expectations.
I also want to mention that CancerCare offers short-term telephone counseling provided by licensed oncology social workers. Many of our online group members choose to supplement their group experience with individual counseling. If you are interested in learning more or possibly enrolling, I encourage you to call CancerCare’s Hopeline at 800-813-4673. All the calls are answered by oncology social workers who can get you connect you with support. Our hours are Mondays to Thursdays 9 a.m. -7 p.m. EST and Fridays 9 a.m. -5 p.m.
Can I join an online support group if I live outside of the U.S.?
Thank you for your interest in our online support groups. At this time, CancerCare’s online support groups are only available to people residing within the United States (including Puerto Rico and U.S. territories).
For more information about support groups, read our publication “Why Join a Support Group?”.
Is there a support group for long term adult survivors with serious late effect problems, such as radiation plexopathy?
CancerCare offers online support groups for adult cancer survivors who are still within 2 years of completing their cancer treatments. The Post Treatment Survivorship Support Group is for participants of all ages, while the Young Adult Post Treatment Survivorship Support Group is for people ages 39 and under. While not specifically focused on radiation plexopathy, both groups address the issue of long term treatment side effects because it is such a common challenge for survivors as they transition to life after cancer. Our support groups also discuss other survivorship concerns including fears of recurrence, creating new daily routines including the transition back to work or school, acclimating to physical changes experienced during treatment, as well as other topics that the group moderator or group members themselves may raise in the course of sharing more about their experiences.
To join one of our groups, we do ask that you complete a short online screening to confirm that the groups will meet your needs and expectations.
But if you are interested in seeking out more specific support for radiation plexopathy, there is a resource list featured on Cancer Survivors Network that includes links to personal blogs as well as a private Facebook group. Please be aware that in most cases, a private FB group is not moderated by a trained professional and your confidentiality is not guaranteed.
My daughter is 21 years old and just had her third surgery for cancer in 11 years. The doctors took a wait and see approach the last two times, but they are currently doing a molecular study to determine treatment. I don't know how to be there for my daughter and keep encouraging her. She is lacking in social skills after all these years and she refuses to do therapy. How do I encourage her to maybe get involved through a website or a support group? She needs more than just her mom.
As your daughter prepares for her next steps in treatment, it is understandable that you would like her to gather support for herself. A cancer diagnosis can be isolating and having additional outlets of support can potentially benefit her in a number of ways. However, as difficult as it may be to accept, the decision to seek this support must be her own.
What you can do is make her aware of the many resources available to her. Your daughter may not be open to the idea of counseling for instance, but she may be more receptive to a support group of peers. Joining a group can offer comfort and community, and the sense of being understood by others facing similar challenges. Groups can also help participants learn new ways of coping and offer hope. CancerCare offers a face-to-face Young Adult Patient Support Group for anyone located in the New York City area. In addition, we offer an online Young Adult Patient Support Group for anyone living in the United States. Your daughter may also contact Stupid Cancer, an organization that addresses young adult cancer issues through advocacy, support and more.
Finally, you may want to consider connecting with your own support. CancerCare offers a number of services for caregivers like yourself, including our online Caring for an Adult Child with Cancer Support Group. We also offer a number of publications and informational podcasts about navigating the caregiver experience. For more information, you can contact CancerCare’s Hopeline at 800-813-HOPE (4673).
From the Archive: Questions about Lung Cancer
My 68-year-old husband was diagnosed with lung cancer, had radiation and chemo, and is currently in remission. Since ending his treatment, his personality has changed drastically and he directs his anger towards me. Can chemo affect a person mentally?
Chemotherapy can affect a person’s mood, as can other medications such as steroids. It is important that you and your husband inform his doctor of changes in his mood to rule out any medical causes. The change in his personality may also be a sign that he is still struggling emotionally with his diagnosis and treatment. Cancer can be overwhelming and bring up many feelings from anxiety to anger to sadness. As your husband’s primary caregiver, those feelings may be directed towards you since you are the one he is closest to and trusts. If you haven’t done so already, letting your husband know how his feelings and behavior affect you is important. Seeking couple’s counseling is also a good idea if you are having difficulties communicating with each other.
The end of treatment often can lead to many strong and conflicting feelings. When a person is first diagnosed with cancer, he/she is often focused on learning about the diagnosis and getting through treatment. This can delay the emotional impact of cancer and feelings may come up once treatment ends, as there is more time to think about what has happened. For more information on coping post-treatment read, After Treatment Ends: Tools for the Adult Cancer Survivor.
My husband has just been diagnosed with small cell lung cancer with small tumors in his liver. He starts chemo next week with 4 hours, day 1 and 2 hours, day 2 and 3. He repeats this every 18 days for six sessions. Is this the normal treatment for small cell lung cancer? Where would I look to find information on clinical trials?
Later-stage small cell lung cancer is characterized by a spread of the disease from the lungs to other organs such as the liver, and is normally treated with aggressive chemotherapy. Since the treatment is aggressive, it must be administered over a number of days for each session, and the sessions are spaced out with non treatment breaks of 18 to 21 days to make sure that the patient’s overall health is not affected. Patients whose tumors respond well to chemotherapy may be considered for a radiation treatment to the brain called Prophylactic Cranial Irradiation (PCI) in which the entire brain receives radiation with the intent of stopping the spread of the disease. For more information about the treatment of small cell lung cancer, please visit the National Cancer Institute’s website.
CancerCare collaborates with EmergingMed’s clinical trials matching service, which is designed to assist lung cancer patients in identifying and accessing clinical trials which may be appropriate to their medical situation.
How can I breathe with a lung after the pneumonectomy? Is there anything I should be doing?
A pneumonectomy is the surgical removal of one lung in which a lung cancer tumor involves all the lobes of that lung and is confined to only that area. A person with two normal lungs would be able to tolerate the impact of the reduced lung capacity on their breathing. However, people who have a history of smoking, emphysema, or bronchitis may not be candidates for this treatment due to their diminished overall lung capacity. Age may also play a role as people over age 70 have a higher risk of complications from this procedure.
Be proactive with your doctor about what your recovery plan will be. A patient who has completed a pneumonectomy will be expected to undergo a course of pulmonary rehabilitation with a respiratory therapist, who will guide the patient through regular exercises and techniques designed to help maximize breathing capacity.
Learn more about the professionals who might be part of your recovery team in our fact sheet, “Your Health Care Team: Your Doctor is Only the Beginning”.
Listen to our podcast, The Importance of Communicating with Your Doctor About Follow-Up Care.
My sister has stage 4 non-small cell lung cancer as well as tumors in her liver. Are there two different chemotherapy treatments for both the lung and the liver or are they treated with the same drugs?
Stage 4 non-small lung cancer is characterized by the spread (also known as metastasis) of lung cancer cells through the bloodstream to organs outside the lungs such as the liver, brain, adrenal glands or bones. These cells attach to the new areas and begin to grow new tumors. The cells of the new tumor site, however, are lung cancer cells rather than liver cancer cells. So the chemotherapy your sister’s oncologist has chosen to treat the main tumor site in the lungs would also be considered the most appropriate treatment for the lung cancer tumors that have grown in her liver.
One of the benefits of chemotherapy used for Stage 4 lung cancer is not only that it’s treating tumors known to exist, but it is also working on other tumors that may be too small to be detected yet. That’s why chemotherapy is considered a systemic therapy - it treats cancer tumors throughout the body.
Find more information about treatments for lung cancer in our booklet, Treatment Update: Lung Cancer.
CancerCare also offers a full range of free support services for people affected by lung cancer.
My best friend's husband has just started chemo for lung cancer but refuses to quit smoking. This is driving a huge wedge between the two of them. Does smoking impact the effectiveness of the chemo?
This is a common question that comes up for people diagnosed with and in treatment for lung cancer. Some lung cancer patients continue to use tobacco products either because the chemical addiction to nicotine is so strong that they are unable to quit, or they have found that smoking provides them with a soothing or calming effect in stressful situations.
A study featured at the 2006 Annual meeting of the American Association for Cancer Research (AACR) reported that nicotine stopped chemotherapy drugs such as gemcitabine, cisplatin and taxol—all of which figure prominently in first-line treatment of lung cancer—from killing cancer cells and significantly reduced the effectiveness of the treatment, according to the researchers.
In contrast, another 2006 research study, conducted by the M.D. Anderson Cancer Center, focused on the overall survival of late-stage, non-small-cell lung cancer (NSCLC) patients who quit smoking or continued to smoke during treatment. The study, which followed the survival experiences of 1,370 NSCLC patients from 1993 through 2002, found no significant difference in overall survival between these two groups of patients. Among those patients who did survive, however, and who had quit smoking at the onset of their treatment, the risk of developing a second lung cancer was significantly lower.
Your shared that your friend’s husband’s smoking is affecting their relationship. CancerCare’s oncology social workers often work with couples in situations like this and are able to help them develop new communications skills which can reduce stress and improve relationships. Please urge your friend to call us at 1-800-813-HOPE (4673).
I have stage 4 non-small cell lung cancer and now am receiving Tarceva. I'm trying to prepare for the future by exploring hospice and want support for my husband. Do you know what kind of pain I might expect?
There is no easy means of determining how late-stage lung cancer may progress. At times the process can be relatively benign and pain free; at other times, it may cause the person with cancer to deal with discomfort and pain. You have already identified one of the most appropriate resources for managing your situation - hospice care.
Hospice provides some of the best palliative care available and focuses on the patient’s physical, emotional and spiritual comfort. We encourage patients and family members dealing with late-stage cancer to contact local hospices as soon as possible. This gives patients and their loved ones the opportunity to develop a relationship with staff and ask questions (such as how pain and symptoms can be managed) and to determine what services could be helpful. Connecting with hospice often times results in peace of mind for both patient and family members, as needs can be assesed, questions answered, and important next steps identified.
For more information about hospice and end-of-life care, please consult the National Hospice and Palliative Care Organization’s website, Caring Connections.
Another resource is our publication, “Caregiving at the End of Life”. And remember that CancerCare’s professional oncology social workers assist lung cancer patients and their loved ones in situations similar to yours and can help them navigate their way through end of life care.
I was diagnosed with non-small cell lung cancer and am receiving chemotherapy. I've had two colds within a three-week period and also a low level of hemoglobin in my blood (the doctor has recommended erythropoietin treatments). Could these issues be diet related?
Chemotherapy for either small cell or non-small cell lung cancer tends to be fairly aggressive and can produce some difficult side effects. While chemotherapy is focused on destroying lung cancer cells it can also interferes with the production of the three types of blood cells: red blood cells, white blood cells, and platelets. Normally, just before you start a chemotherapy session, your doctor arranges for you to have blood tests to determine the effect the chemotherapy is having on your blood cells. Low counts of any of these cells may prompt either a change in dosage or frequency of treatment, or a need to take medication that can stimulate bone marrow production of the blood cells.
Your colds may be due to the chemotherapy’s suppression of the bone marrow’s production of white blood cells, which are the body’s infection fighters. If your doctor feels that your white cell count has significantly decreased, he or she may consider putting you on a medication for this condition. Ask your doctor whether this might be a possibility.
Similarly, the low levels of hemoglobin you mention may be due to low red blood cell counts caused by chemotherapy. Red blood cells carry oxygen and iron to provide the body with components necessary for energy. Red blood cells are an important factor in maintaining energy levels in our bodies and too few of them can result in fatigue and anemia. It sounds like your doctor believes an erythropoietin-type drug might be helpful in boosting your red blood cell count. While extreme low red blood cell counts are not normally related to diet, you might also want to ask your doctor for a referral to a dietitian who works with cancer patients to develop a meal plan that would increase your dietary intake of iron and help you maintain a healthy weight.
CancerCare offers publications that provide more detailed information on managing chemotherapy side effects.
I was diagnosed with stage IB non-small cell lung cancer. I had surgery (lobe resection) and my doctor gave me a referral to an oncologist for "adjuvant treatment," meaning chemotherapy. Why do I need to do this?
For a long time, it was believed that only surgery was necessary to achieve a successful outcome for lung cancer patients diagnosed with stage IB to IIIA non-small cell lung cancer. However, a number of recent investigational research studies provided evidence that patients who received both surgery as their primary treatment and chemotherapy as an “adjuvant,” or secondary treatment, reduced their risk of the cancer recurring. Unlike chemotherapy used as a primary therapy, adjuvant chemotherapy is usually shorter-term and has a fixed duration.
You should discuss any of your concerns about the side effects of chemotherapy with your oncologist before treatment starts. I do want to say that there are significantly fewer, less severe side effects in current-day chemotherapy treatments and much more can be done to address them.
For more information on lung cancer staging and treatment, read our lung cancer publications
View all of CancerCare’s publications about managing side effects.
My wife was diagnosed with stage IV non-small cell lung cancer (NSCLC) and we have health insurance. One of her chemotherapy drugs is very expensive and insurance only pays $1000 per chemo treatment. She is 63 and does not qualify for Medicare. We are looking at co-payment debt of over $100,000. Any suggestions?
We often find that the private health insurance we have is fine when you are healthy, but not sufficient enough when diagnosed with cancer. Unfortunately, you are correct that she must either be 65 years old or determined to be disabled by the Social Security Administration for 24 months before qualifying for Medicare. I suggest you begin the disability application process if you have not already. Certain cancer diagnoses qualify for expediting the application process (called Compassionate Allowances). You can find out more about the qualifications and can apply online or call to speak with a Social Security representative about your specific situation.
Co-pay foundations are independent charities that assist insured patients who qualify with the co-pay costs of their pharmaceutical products. Current charities that assist non small-cell lung cancer (NSCLC) patients are:
- CancerCare Co-Payment Assistance Foundation
- Good Days
- The Patient Advocate Co-Pay Relief Foundation
- Patient Access Network Foundation
CancerCare also offers limited assistance for transportation, homecare, and childcare for patients who qualify. Some local divisions of the American Cancer Society may also have help with transportation to treatment as well as assistance with wigs.
The Patient Advocate Foundation’s trained case managers provide guidance and support and can intervene on your behalf regarding medical debt. They also maintain a network of volunteer attorneys.
Lawhelp.org provides referrals for affordable and/or free legal assistance programs in one’s area and advice about bankruptcy protection and other financial issues.
And finally, you may read our fact sheets about finding financial assistance in your community for further suggestions:
I'm in remission after having chemotherapy and radiation for small cell lung cancer. I've recently started having a shortness of breath when I'm at rest (doesn't seem to happen at work). Is there anything I can do?
The shortness of breath, or dyspnea, you are experiencing can be uncomfortable and frightening. The more you struggle for air, the harder your lungs work to get oxygen, and the more distressed you feel. It is extremely important to consult a medical professional to find out what might be setting this cycle in motion. Possible causes could be:
- a side effect of chemotherapy or radiation (which may reduce lung capacity)
- anemia, meaning your lungs don’t have enough red blood cells to deliver oxygen throughout your body
- a non-cancer lung condition, like asthma, COPD, or an allergy
- anxiety caused by fears of recurrence, the lasting emotional effects of having had cancer, or other types of stress
Contact the American Lung Association (1-800-LUNGUSA) for information on other possible causes of dyspnea. Depending on its source, a doctor may prescribe a steroidal or anti-anxiety medication, supplements, oxygen, or special exercises. Progressive relaxation, meditation, and guided imagery can all help reduce stress and anxiety. CancerCare has several Connect Education Workshops that address stress management in cancer survivors and Managing the Stress of Survivorship.
To prepare for your doctor’s appointment, keep a record of your breathing problems, with these questions in mind:
- When do you experience shortness of breath?
- When does it feel worst?
- How long does each episode last?
- What is going on around you before, during, and after each episode?
- Does anything make it feel better?
Take your record with you to your appointment. It is very important that a medical professional review your symptoms, especially if you’re also feeling faint and dizzy, if your heart is pounding, or if it’s difficult to breathe even at rest.
CancerCare has information on creating a survivorship care plan that can be used to personalize your post-treatment needs and communicate them to your health care provider.
Don’t be afraid to advocate for yourself so that your medical, emotional, and practical needs are addressed, and your quality of life is maximized.
My husband has been diagnosed with Stage IIIA non-small cell lung cancer that had spread to the mediastinal nodes. I have heard that the five-year survival rate for this type of cancer is 15% or approximately two years. Is this correct?
The American Society of Chest Physicians indicates that the five-year survival rate for Stage IIIA non-small-cell lung cancer (NSCLC) ranges from less than 10% to 40% and is dependent on the extent of mediastinal lymph node involvement. NSCLC type (squamous cell, adenocarcinoma or large cell carcinoma) may also influence survival rates.
It is important to keep in mind that the primary purpose of staging a cancer is to make sure that the correct treatment protocols are utilized, rather than to predict survival. Survival rates do not represent the experience of any individual lung cancer patient. They are statistical figures which are comprised of data collected on thousands of cancer patients and then calculated to develop the average or median computation for that very large group.
Many factors influence lung cancer survival including a patient’s age, overall state of health prior to diagnosis, healthy lifestyle, compliance to treatment regimens and response to treatment. Very often, newly diagnosed patients who join CancerCare’s lung cancer patient support groups have poor survival prognoses, yet survive for significantly longer periods than anticipated.
One valuable coping strategy we have learned from these group members over the years is “staying in moment.” Using our physical and emotional strengths on today’s issues, rather than trying to solve the unknowns of the future, appears to be one of the most effective ways of living each day with lung cancer.
You can also find comprehensive information about lung cancer on CancerCare’s website, www.lungcancer.org.
A friend and co-worker was just diagnosed with lung cancer and it's inoperable. As his friend and boss, how can I best help? What should we prepare for?
It’s important to bear in mind that while a cancer may be diagnosed at a stage where it is not operable, it may very well be treatable. Many lung cancer patients are diagnosed at a stage where surgery is not a viable option but where appropriate chemotherapy, targeted therapy or radiation therapy may result in better survivorship outcomes.
You may find it helpful to visit CancerCare’s website www.lungcancer.org which was created as a “first stop” for folks newly diagnosed with lung cancer in order to provide them with some basic information and the resources they may find helpful as they navigate a very new and sometimes difficult environment. You may also find that our fact sheet “What Can I Say to a Newly Diagnosed Loved One” offers you some guidance on how best to communicate with your friend.
You mentioned that you are also his boss. The Americans with Disabilities Act provides guidelines on how employers can provide reasonable accommodations for employees disabled with conditions such as lung cancer. You may be interested in reviewing the online publication “The ADA: Your Responsibilities as an Employer” to learn more about how reasonable accommodation may help your colleague continue to work to the extent that he is able to.
My husband has recently been diagnosed with stage 4 small cell lung cancer and can no longer work. How do we pay our bills? I still work, but I don't make enough money. Any advice would be appreciated.
The onset of cancer is a very difficult time for many families financially, with loss of income and the costs of treatment adding to the stress they must cope with. To locate possible resources, I’d suggest the following:
Visit the website of the Cancer Financial Assistance Coalition (CFAC), which offers a database that allows you to search for assistance by either diagnosis or resource type. In addition, there is information on finding assistance.
Order a copy of “A Helping Hand: The Resource Guide for People With Cancer, Financial Edition,” which is available free of charge through CancerCare’s publication order form.
Apply for disability benefits through the Social Security Administration.
The American Cancer Society also offers a searchable database for local resources that can help you find assistance.
My mother has had colon and breast cancer. She now faces a nodule in her lower right lung. Doctors say it is definitely cancer, but are not sure what type (lung cancer or metastasis of the colon or breast). Is a lung biopsy the only way to find out what kind of cancer it is?
Before treatment starts, it is extremely important that the doctor know exactly what kind of cancer is to be treated, as treatment varies with different kinds of cancer. The only way that the kind of cancer can be accurately identified is to have a section of tissue removed from the tumor or nodule so that it may be examined under a microscope by a pathologist, who can identify the cancer cell type and advise the patient’s doctor.
You and your mother may find the following articles from the American Society of Clinical Oncology’s website can provide you with some helpful insights on biopsies and their results:
How does one get compassionate care in clinical trials when there is nothing left in the way of lung cancer treatments?
We believe you are asking about “Compassionate Drug Use” also called “Compassionate Use,” which is the use of therapeutic drugs that have not yet been approved by the FDA to treat cancer, and no other treatments are available. These drugs are called investigational drugs and are usually only available to patients who are participating in a clinical trial. Use of these drugs outside of a clinical trials is extremely limited.
Requests for the compassionate use of an investigational drug must be made via a request from the patient’s doctor to the drug company requesting their permission for its use and their willingness to supply the drug for the patient’s use. If the drug company consents, and frequently they do not, then the doctor must ask the FDA for their permission to use the drug for his or her patient only. The request to the FDA must include detailed medical information about the patient, why the request is necessary, a proposed plan of treatment and the patient’s signed consent. The length of time for FDA approval varies, but may be expedited in emergency situations.
For more information on compassionate drug use, the American Cancer Society provides a helpful reference guide.
Don’t See Your Question Asked?
Browse the Frequently Asked Questions section of our Lung Cancer 101 feature for a number of shorter questions and answers about lung cancer.