Learn more about how CancerCare Case Management can help you address barriers to care.
Find resources and support to manage your financial concerns. Limited assistance from CancerCare® is available to eligible families for cancer-related costs.
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.
If you live in New York, New Jersey, or Connecticut, learn about and view the full calendar of our free community programs.
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:
- Managing the Cost of Living with Cancer, Sep 23, 2020
- Caregiving for Your Loved One Living with Cancer, Nov 3, 2020
- Veterans Living with Cancer, Jun 26, 2020
- Treatment Adherence: Taking Your Pills on Schedule – Why It Is So Important, Jun 24, 2020
- Understanding Diagnostic Technologies and Biomarkers, Jun 22, 2020
- What are Biosimilars? Understanding Their Role in Cancer Treatment: Current and Future Perspectives, Jun 18, 2020
- Current Perspectives in Cancer Survivorship, Jun 16, 2020
- The New Coronavirus (COVID-19): Emerging Guidelines for People Living & Coping with Cancer, Jun 15, 2020
- Managing the Side Effects of Immunotherapy, May 6, 2020
- Understanding the Role of Immunotherapy in Treating Cancer, Apr 29, 2020
- For Caregivers: Care Coordination for Your Loved One Living with Cancer and Other Health Problems, Apr 22, 2020
- The New Coronavirus (COVID-19): Updated Guidelines for People Coping with Cancer, Apr 20, 2020
- Caregiving for Your Loved One with Cancer, Apr 14, 2020
- Participating in Decisions about Your Care, Apr 8, 2020
- The New Coronavirus (COVID-19): Guidelines for People Coping with Cancer, Mar 30, 2020
- Cancer and The Workplace: Understanding Your Legal Protections, Mar 25, 2020
- New Perspectives in Clinical Trial Research, Mar 20, 2020
- Understanding the Costs of Care and Your Health Care Coverage, Mar 18, 2020
- Trends in Oncology and Treatment Planning: What You Need to Know, Mar 4, 2020
- Managing Eye and Vision Changes Related to Cancer Treatments, Mar 2, 2020
- Taking Your Treatment on Schedule: Its Importance in Managing Cancer, Feb 26, 2020
- Care for Your Bones During & After Cancer Treatment: Tips to Improve Bone Health, Nov 18, 2019
- Preventing Chemotherapy Induced Nausea and Vomiting, Oct 28, 2019
- Participating in Decisions about Your Care, Jun 19, 2019
- New Trends in Cancer Survivorship, Jun 18, 2019
- For Caregivers: Care Coordination for Your Loved One Living with Cancer and Other Health Problems, Jun 17, 2019
- Understanding the Costs of Care and Your Health Care Coverage, Jun 12, 2019
- Update on Clinical Trials: How They Work, Jun 10, 2019
- Cancer and the Workplace: Understanding Your Legal Protections, May 29, 2019
- Trends in Oncology and Treatment Planning: What You Need to Know, May 22, 2019
- Managing the Side Effects of Immunotherapy, May 15, 2019
- Understanding the Role of Immunotherapy in Treating Cancer, Apr 17, 2019
- Managing Eye and Vision Changes Related to Cancer Treatments, Apr 15, 2019
- Joys and Challenges of Pets in Your Home When You Have Cancer, Apr 8, 2019
- Taking Your Pills on Schedule: Its Importance in Treating Cancer, Apr 3, 2019
- Caregiving for Your Loved One with Cancer, Mar 19, 2019
- Life with Graft vs. Host Disease (GVHD) Post Allogeneic Stem Cell or Bone Marrow Transplantation: New Treatment Approaches, Dec 13, 2018
- Current Perspectives on Cancer Survivorship, Dec 11, 2018
- Genomics and the Future of Cancer Treatment, Oct 15, 2018
- Genomics and Genetics: What is the Difference?, Jun 25, 2018
- Update on CAR-T Cell Therapy, Jun 25, 2018
- Treatment-Related Rash and Dry Skin, Jun 20, 2018
- Current Perspectives on Cancer Survivorship, Jun 19, 2018
- What Are Biosimilars? Understanding Their Role in Cancer Treatments: Current and Future Perspectives, May 24, 2018
- Managing the Side Effects of Immunotherapy, May 2, 2018
- Understanding the Role of Immunotherapy in Treating Cancer, Apr 25, 2018
- Taking Your Pills on Schedule: Why It Is So Important in Managing Cancer, Apr 18, 2018
- Preventing Chemotherapy Induced Nausea and Vomiting, Apr 16, 2018
- Managing Eye and Vision Changes Related to Cancer Treatments, Feb 26, 2018
- Mind Body Techniques to Cope with the Stresses of Cancer, Nov 15, 2017
- What Are Generic Drugs: Understanding Their Role in Cancer Treatment, Jun 29, 2017
- For Caregivers: Care Coordination for Your Loved One Living with Cancer and Other Health Problems, Jun 14, 2017
- Taking Your Pills on Schedule: The Importance of Adherence in the Treatment of Cancer, Jun 14, 2017
- Participating in Decisions about Your Care, Jun 7, 2017
- Cancer and the Workplace: Understanding Your Legal Protections, May 24, 2017
- Preventing Chemotherapy Induced Nausea and Vomiting, May 22, 2017
- Trends in Oncology and Treatment Planning: What You Need to Know, May 3, 2017
- Managing the Side Effects of Immunotherapy, Mar 15, 2017
- Living with Cancer Throughout The Cancer Journey, Mar 10, 2017
- Understanding the Role of Immunotherapy in Treating Cancer, Mar 8, 2017
- Managing Eye and Vision Changes Related to Cancer Treatments, Mar 6, 2017
- What Are Biosimilars? Understanding Their Role in Cancer Treatment: Current and Future Perspectives, Feb 1, 2017
- Managing Sensory Disruptions During Cancer Treatments, Dec 5, 2016
- For Health Care Professionals: Care Coordination for Older Men Living with Cancer, Aug 23, 2016
- Precision Medicine in Cancer Treatment, Jun 29, 2016
- Managing the Costs of Living with Cancer, Jun 8, 2016
- Advances in Treating Chemotherapy Induced Nausea and Vomiting, May 23, 2016
- Taking Your Pills on Schedule – Why It Is So Important in Managing Cancer, Feb 10, 2016
- Nutrition and Healthy Eating Tips During and After Cancer Treatments, Feb 1, 2016
- Cancer and the Workplace: Knowing Your Legal Rights, Dec 10, 2015
- What’s New in Managing Blood Clots During Cancer Treatments, Oct 30, 2015
- For Health Care Professionals: Care Coordination for Older Men Living with Cancer, Jul 14, 2015
- Understanding Diagnostic Technologies and Biomarkers, May 6, 2015
- Healthy Eating and Managing Weight Changes During Cancer Treatment, Apr 13, 2015
- Managing the Costs of Living with Cancer, Feb 4, 2015
- For Caregivers: Practical Tips to Cope, Nov 14, 2014
- Highlights of the Affordable Care Act, Nov 11, 2014
- Managing Cancer Pain: What You Need to Know, Mar 21, 2014
- Understanding Chemotherapy-Induced Neutropenia: Low White Blood Cell Counts, Feb 21, 2014
- Cancer and the Workplace, Feb 6, 2014
- Advances in Treating Chemotherapy-Related Nausea and Vomiting, Jan 24, 2014
- Young Adult Survivorship: Fertility, Sexuality and Intimacy, Jun 28, 2013
- Understanding the Affordable Care Act (ACA) for People Living with Cancer, Dec 12, 2012
- Helping Cancer Patients and Their Families Cope with the Stresses of Caregiving, Dec 6, 2012
- Managing Post-Treatment Neuropathy, Jul 17, 2012
- Stress Management for Caregivers: Practical Tips to Cope, Jun 29, 2012
- Changing Roles and Responsibilities for Caregivers, Jun 19, 2012
- Recapturing Joy and Finding Meaning, May 15, 2012
- Planning Your Comfort and Care at End of Life, May 10, 2012
- Using Mind/Body Techniques to Cope with the Stress of Survivorship, Apr 24, 2012
- Nutrition, Physical Activity and You: A Guide for People Living With Cancer, Nov 15, 2011
- Understanding the Important Role of Adherence in the Medical Management of Cancer, Sep 21, 2011
- Fear of Recurrence and Late Effects: Living with Uncertainty, Jul 12, 2011
- Money Matters: Finding Resources to Manage Cancer Treatment Costs, Jun 22, 2011
- Stress Management for Caregivers: Taking Care of Yourself Physically and Emotionally, Jun 14, 2011
- The Challenges of Coping with Cancer and Other Health Problems, Jun 1, 2011
- Weight Changes After Cancer Treatment: Why is it Happening and What Can I Do About It, May 10, 2011
- Mouth Pain and Discomfort: All You Need to Know About Mouth Sores and Oral Mucositis, Apr 27, 2011
- Helping Children and Teens Understand When a Parent or Loved One Has Cancer, Apr 20, 2011
- Chemobrain: The Impact of Cancer Treatments on Memory, Thinking and Attention, Apr 12, 2011
- Survivors Too: Communicating With and Among Family, Friends and Loved Ones, Jul 13, 2010
- Survivorship and Workplace Transitions, Jun 22, 2010
- Communicating with Your Health Care Team After Treatment: Making the Most of Your Visit, May 18, 2010
- Trouble Sleeping? Sleep Better to Feel Better: Tips You Can Use, Apr 13, 2010
- Helping Teachers and Educators Support Siblings of Children with Cancer, Oct 8, 2009
- Understanding Peripheral Neuropathy, Jul 16, 2009
- Survivors Too: Family, Friends and Loved Ones - Managing the Fatigue of Caregiving, Jun 23, 2009
- The Importance of Nutrition and Physical Activity, May 19, 2009
- For Parents, Caregivers and Professionals: Helping Brothers and Sisters of Children Living with Cancer, May 14, 2009
- Dental Health During Cancer Treatments, Apr 24, 2009
- Managing the Stress of Survivorship, Apr 14, 2009
- Medical Emergencies in Cancer Treatment, Apr 1, 2009
- Balancing Cancer and Careers: Living and Working with Cancer, Mar 12, 2009
- For Caregivers: Coping with Holidays, Special Occasions and Birthdays, Throughout the Year, Dec 12, 2008
- Survivors Too: Family, Friends and Loved Ones, Jun 24, 2008
- Rediscovering Intimacy in Your Relationships Following Treatment, May 13, 2008
- The Importance of Communicating with Your Doctor About Follow-Up Care, Apr 22, 2008
- Finding Hope and Meaning After Treatment, Jun 19, 2007
- My Treatment is Over: Why Do I Feel So Alone and Sad?, May 15, 2007
- Neuropathy and Joint Aches: New Post Treatment Challenges, Apr 17, 2007
- Managing Your Costs of Recovery, Jun 20, 2006
- Balancing Your Needs and Your Role as a Caregiver, Jun 13, 2006
- Is It My Cancer or Am I Getting Older?, May 23, 2006
- The Bereaved Caregiver in the Workplace, May 10, 2006
- Stress Management Tips for Survivors, Apr 25, 2006
- The Challenge of Creating Supportive Work Environments for Employees with Cancer and Their Caregivers, Apr 5, 2006
Read or order our free Connect booklets and fact sheets offering easy-to-read information about the latest cancer treatments, managing side effects and coping with cancer.
We currently do not offer any Rare Cancers specific publications. You may be interested in these general-interest publications:
- Coping With Cancer: Tools to Help You Live
- Caregiving for Your Loved One With Cancer
- Helping Children When a Family Member Has Cancer
- Communicating With Your Health Care Team
- Understanding and Managing Chemotherapy Side Effects
- Sources of Financial Assistance
- Finding Resources in Your Community
- If You've Just Been Diagnosed
- “What Can I Say to a Newly Diagnosed Loved One?”
- Caring Advice for Caregivers: How Can You Help Yourself?
Every month, featured experts answer your questions about coping with cancer. View all questions and answers.
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.
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.
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.
Magnolia Meals at Home
A meal delivery program that helps patients by providing nourishing meals to households affected by cancer. Is currently available in and around Woodcliff Lake, NJ and Andover, MA, Raleigh-Durham, NC and New Haven, CT (as well areas in New York, New Hampshire and Boston, MA). For more information please visit magnoliamealsathome.com or contact Kathy Nugent, LCSW at 800-813-4673, ext. 6809.
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For Rare Cancers
National Organization for Rare Disorders (NORD)