Questions & Answers about Patient and Peer Matching
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For Breast Cancer
- Q.
Is there a way to find triple-negative breast cancer specialists? And are there specific support groups or programs to speak with women with triple-negative breast cancer?
A.When coping with a diagnosis of triple-negative breast cancer, it is important to ensure that your medical team is well-informed about the latest research and best practices. While we are unable to recommend or endorse a specific doctor, here are some suggestions for seeking out a breast cancer specialist who is experienced with treating triple-negative breast cancer.
The National Cancer Institute has designated cancer centers throughout the United States and provides information on doctors practicing in your area. You can access their online database or call them at 800-4-CANCER.
Ask your current doctor for a referral. Many people may feel hesitant to ask for a second opinion for fear of creating an uncomfortable relationship with the doctor. But be assured that a second opinion is considered a routine and necessary component of one’s health care plan. In fact, most medical professionals expect their patients to receive a second opinion.
Researching clinical trials in your area will allow you to learn which doctors are participating, and get an idea of specialists in the field. A free, confidential resource to locate clinical trials accepting women with triple-negative breast cancer is The Clinical Trials Matching Service website and helpline: 877-769-4827.
Contact the local county medical society, hospitals or breast cancer center in your area.
It is perfectly acceptable to ask doctors how many of their patients have TNBC, and how familiar they are with treating this subtype of breast cancer.
To answer your second question, getting support from other women who have experienced triple negative breast cancer can be a valuable tool to feel less alone and more empowered. Organizations such as Living Beyond Breast Cancer and the American Cancer Society provide a service called peer matching, in which you can be paired with a volunteer who had a similar diagnosis. The Triple Negative Breast Cancer Foundation has a very active online forum where people impacted by TNBC discuss various topics. There may be support groups in your area where you can connect with peers, as well. Your oncology social worker is a good resource for local referrals.
Answered by
Allison Nilsen, MSW, LCSW
For Carcinoid Tumor
- 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.
Answered by
Caroline Edlund, MSW, LCSW-R