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Counseling

Counseling

Oncology social workers help you cope with the emotional and practical challenges of rare cancers. Contact us at 800‑813‑HOPE (4673) or info@cancercare.org.
Learn more about counseling.

Case management

Resource Navigation

Learn more about how CancerCare Resource Navigation can help you address barriers to care.

Financial assistance

Financial Assistance

Find resources and support to manage your financial concerns. Limited assistance from CancerCare® is available to eligible families for cancer-related costs.

Support groups

Support Groups

Connect with others in our free support groups led by oncology social workers.

We currently do not offer a rare cancers specific group. You may consider joining our general online support groups for people with cancer. Register now.

Community programs

Community Programs

Learn about and view the full calendar of our free community programs.

Specialized programs

Specialized Programs

CancerCare offers specialized programs to address specific populations and concerns.

Computer

Coping Circle Workshops

Virtual educational and supportive workshops led by oncology social workers and qualified co-facilitators. These workshops cover numerous topics and are offered in English and Spanish.

Find Information

Connect workshop

Connect Education Workshops

Listen in by telephone or online as leading experts in oncology provide up-to-date information about cancer-related issues in one-hour workshops. Podcasts are also available.

We currently do not offer a Rare Cancers specific workshop. You may be interested in these general-interest workshops:

Podcasts

General Topics
Ask CancerCare

Ask CancerCare

Every month, featured experts answer your questions about coping with cancer. View all questions and answers.

Rare Cancers
  • Q.

    My brother was diagnosed with salivary gland cancer and it's supposedly rare. How can I find other patients or organizations that can help support him?

    A.

    A cancer diagnosis can feel very isolating, particularly when the diagnosis is a rare one. Helping your brother find community and social connection through a support group is one way to help to reduce those feeling of isolation. In addition, groups can be a valuable source of emotional support, resources, and information from others going through similar experiences. While it may be difficult to find a group specific to people with salivary gland cancer, there are many excellent supportive resources available.

    For example, CancerCare offers a number of face-to-face, telephone and online support groups. To learn more about our current offerings and how to register, you can contact our Hopeline at 800-813-HOPE (4673) to speak to one of our professional oncology social workers. Other organizations like the Rare Cancer Alliance offer patient forums geared towards those with rare conditions.

    You may also want to explore peer-matching services offered by organizations like Cancer Hope Network, Imerman Angels and WhatNext. They work to match patients with one-to-one support provided by those with a similar cancer history.

    Finally, disease-specific organizations (e.g., The Oral Cancer Foundation, Support for People with Oral and Head and Neck Cancer) can provide additional guidance and information. They frequently offer their own patient forums in addition to other services like education, advocacy and resource referrals.

    Photo of Caroline Edlund Answered by
    Caroline Edlund, MSW, LCSW-R

    ∞ Direct link to this question

    Tags:
    rare cancerssupport groups
  • Q.

    I was just diagnosed with a very rare type of cancer. My oncologist has admitted that he has not treated this type of cancer before, and I feel uncomfortable having him guide my treatment planning. Where can I get additional information about my cancer and typical treatment approaches?

    A.

    It is understandable that you have questions after receiving your diagnosis. It’s also understandable that you wish to consult with a medical professional who is both familiar with and has experience in treating your type of cancer. Although oncologists, like your doctor, are specially trained to provide medical care to people diagnosed with cancer, many have specific areas of expertise. As you face important treatment decisions, it is important to have vetted information to inform your choices, provided by someone who specializes in your type of cancer.

    Many people choose to get a second opinion in the circumstances you describe. A second opinion provides an opportunity to have your diagnosis and projected treatment plan confirmed by another medical professional. These consultations may also offer additional medical information about your diagnosis and additional recommendations or treatment options to consider. Speak with your oncologist about your interest in consulting with a specialist. He may have referrals for you. Otherwise, reach out to an organization associated with treating your type of cancer, academic medical institution, or National Cancer Institute-designated facility. Although your cancer is rare, there may be medical professionals who are familiar with the disease, available to guide you. NCI also offers additional information in their fact sheet How to Find a Doctor or Treatment Facility If You Have Cancer.

    CancerCare’s professional oncology social workers are able to answer any additional questions you may have about getting a second opinion. To speak with an oncology social worker, please contact our Hopeline at 800-813-HOPE (4673). CancerCare also has e-booklets and publications on improving communication with your health care team.

    Photo of Caroline Edlund Answered by
    Caroline Edlund, MSW, LCSW-R

    ∞ Direct link to this question

    Tags:
    rare cancersdoctor-patient communicationadvocacy
  • Q.

    I have a very rare cancer, and it is called well-differentiated neuroendocrine tumor (carcinoid). I have been told there is not a cure for this type of cancer, but I am hoping to find a support group (or people to chat or do activities with). Can you help me?

    A.

    A support group can be a wonderful way to find social connection, resources and information from others going through similar experiences. Although your cancer is rare, there are still excellent supportive resources available.

    CancerCare offers a free, private online support group for individuals in treatment for carcinoid and neuroendocrine tumors This message-board style group is moderated by an oncology social worker, and is available 24/7 during the group cycle. To learn more and register, please visit the support group page.

    There are other organizations that provide excellent support as well. The Carcinoid Cancer Foundation has patient forums in addition to other services like resource referrals, education and advocacy. The Rare Cancer Alliance offers patient forums geared towards those with rare conditions; they offer one for those diagnosed with carcinoid tumors and one for those with neuroendocrine tumors. Similarly, the Association of Cancer Online Resources (ACOR) hosts groups through an email listserv, including a Carcinoid Cancer Group.

    You may also want to explore “peer-matching” services offered by organizations like Cancer Hope Network, Imerman Angels and WhatNext. They work to match patients with one-to-one support provided by those with a similar cancer history.

    Finally, CancerCare offers a number of general face-to-face, telephone, and online support groups that may meet your needs. To learn more about our current offerings and how to register, you can contact our Hopeline at 800-813-HOPE (4673) to speak to one of our professional oncology social workers.

    Photo of Caroline Edlund Answered by
    Caroline Edlund, MSW, LCSW-R

    ∞ Direct link to this question

    Tags:
    carcinoid tumorrare cancersneuroendocrine tumorssupport groupspatient and peer matching

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