Man with glasses looking at a brochure

Cancer and its treatment is complex. Health care providers don't always provide the answers you need in a way you can understand, or when you are most receptive to hearing it. Some survivors feel that their health care providers lack empathy or have shut down their sensitivities to the impact that a new cancer diagnosis can have on patients. Health care providers may not have time to talk to you or listen to your questions, and some may assume that you already know more than you do. In some cases health care providers may try to limit information because they think it will overwhelm you.

Knowing what information you want and need and how to find it can be difficult. Getting informed means learning what information you want (and don’t want) and knowing how to find it.

 

Find Different Sources of Information

Health related information can often be found in clinics, in pamphlets in waiting areas, in patient and family libraries and on the Internet. Information about how to manage cancer in the context of everyday life can be found through classes and community services and from family, friends and other people who have had cancer (peers).

Information about living with cancer in the context of everyday life is often the biggest information gap because it is not addressed by the health care system. For many people, other survivors are the best source of information about everyday life with cancer.

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Get Peer Support

Going through cancer can be a very scary experience that leaves you feeling uncertain about your future and the future of your loved ones. You can feel that only those who have been through it can relate to you. Places like the Canadian Cancer Society (CCS) and Gilda’s Club offer a peer matching program where you can connect with other people with things in common with you. Some survivors view support from other survivors as the best way of being informed.

Getting peer support through programs at Gilda’s or CCS allows you to control the timing of your contact with people so that you don’t feel forced to speak to them. Some other ways of meeting with other survivors are through various online community networks of cancer survivors on Twitter and Facebook.

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Manage Information Overload at Your Appointments

A lot of important medical information is given to patients when they first learn that they have cancer. Medical information can go into one ear and out the other because a cancer diagnosis is very stressful. You are not alone in feeling rushed or that you cannot manage the amount of information you are getting in your appointments.

These are tips from survivors to help you manage information:

  1. Get as much information as you can in writing. Bring a notepad and pen to every appointment. Ask for pamphlets or handouts to read later.
  2. Ask your health care provider to slow down, repeat information and don’t be afraid to ask questions. If you don’t know what to ask, then ask your health care provider to tell you what other people have asked about the topic.
  3. Take the time to read through the pamphlets your doctor gives you and if questions don’t come to you right away, that’s ok. When they do come to you, call your doctor’s office to discuss or leave a message for a call back.
  4. You are entitled to a second opinion if you feel you need one. Since some health care providers may take offense to this, you can ask your family doctor to organize the second opinion instead of your cancer health care team.
  5. Bring family or friends to your appointments to help you digest information. Sometimes having a family member or friend present can also remind your health care team that you are a person who is loved and cared for by others.

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Resources

The resources listed here were added by Michelle Snow, Patient Education Librarian, Princess Margaret Cancer Centre and ELLICSR Cancer Survivorship Centre.

Sources of Information

Get Peer Support

Manage Information Overload

 

For more information visit the Princess Margaret Patient & Family Library or call 416 946 4501 ext. 5383.

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https://www.uhn.ca/PrincessMargaret/Health_Professionals/Patient_Referral/Pages/dr_referral_psychosocial_oncology.aspx
https://www.uhn.ca/PrincessMargaret/Education/Continuing_Education_Programs/Pages/continuing_education_programs.aspx
Last reviewed: 9/11/2018
Last modified: 1/10/2020 5:18 AM