Relying on the Web: What Cancer Patients Should Know

When I was first diagnosed with cancer, I entered a psychological realm where wanting to know everything about the disease alternated with fear and aversion. Numb and in shock, I would often read over my three-page pathology report, using various websites to meticulously research the strange and frightening terminology it contained.

I’m not alone in feeling this way or in turning to the Internet for help. Nearly half of all Canadian adults are asking questions about cancer, and most turn first to the web for information. The problem is that this self-research is leaving many cancer patients confused, overwhelmed and stressed out. Although we tend to use the Internet as our first resource, most of us don’t have strong faith in the information that it provides.

IMG_0221

According to a new survey commissioned by the Canadian Cancer Society, when it comes to getting definitive cancer information, doctors and healthcare professionals are trusted by 94 per cent of Canadians. In spite of that only eight per cent of Canadians contacted their healthcare team first with questions. Similarly, cancer organizations and charities are trusted by 87 per cent of those seeking information, but less than five per cent of Canadians searching for cancer information reached out to them. People are more skeptical of online sources with only 69 per cent trusting the information. Despite their uncertainty, 85 per cent of people with cancer questions first turned to a search engine.

Why do Canadians so frequently consult the web for information about cancer if they place more confidence in their oncologist and organizations such as the Canadian Cancer Society? According to the survey, convenience is an issue. While the web is easily accessible, more than half of respondents said it is challenging to get time to speak with their healthcare team. But ease of use comes with unexpected side effects. Two-thirds of Internet users felt overwhelmed with information, and 62 per cent felt stressed out and worried, jumping to 70 per cent among Canadians 18 to 34.

There are several alternatives to randomly searching the web that I would strongly recommend.

Use Only Reliable Internet Sites

My cancer facility, the Tom Baker Cancer Centre in Calgary, provides patients with a list of recommend websites. Here are a few of the most essential ones.

American Cancer Society
Canadian Cancer Society
National Cancer Institute
CancerNet
Oncolink

Use The Canadian Cancer Society’s Cancer Information Service

IMG_0117Since 1996, the Canadian Cancer Society has answered 1,250,000 questions through its Cancer Information Service. The Society’s toll-free bilingual Cancer Information Service can be reached at 1-888-939-3333. Assistance is available to cancer patients, caregivers, the general public and healthcare professionals. An information specialist will take all the time you need to answer your questions and provide you with information on the following topics:

  • cancer treatment and side effects
  • clinical trials
  • coping with cancer
  • emotional support services
  • prevention
  • help in the community
  • complementary therapies

The Canadian Cancer Society’s phone line is available during business hours Monday to Friday. You should also note that when you contact the Cancer Information Service for help, your privacy is protected and you will not be asked for donations or put on a mailing list.

Access Support Organizations for Your Specific Cancer Type

Instead of randomly searching the Internet try connecting with an organization that specializes in providing support to individuals with your type of cancer. For example, staff in Ovarian Cancer Canada’s regional offices are available to answer your questions and to provide support via telephone or email. Ovarian Cancer Canada hosts webinars, workshops and events that are relevant to women living with the disease. You can also listen to various educational recordings on their YouTube channel.

Finally, Ovarian Cancer Canada offers a comprehensive guide to support and inform women who have been newly diagnosed with ovarian cancer. The publication is called By Your Side and printed copies of this resource are provided free of charge across Canada. You can Order By Your Side by filling out an online form or by calling 1-877-413-7970 (toll free).

Information Please

The moment I was diagnosed with cancer I entered a psychological realm where wanting to know everything about the disease alternated with fear and aversion. I realized it was solemn news when a week after my hysterectomy the phone range and my surgeon wanted to see me immediately. As I sat in my gynaecologist’s office on that autumn afternoon, he was thoughtful enough to provide me with my own copy of the surgical pathology report, a crucial document outlining the specifics of my uterine and ovarian cancer. He estimated that it would be a couple of weeks before I could have a consultation with a team of oncologists at the Tom Baker Cancer Centre. In the coming days I developed a love-hate relationship with the information that I had been given. Numb and in shock, I read over the three-page report repeatedly, meticulously researching the strange and frightening medical terminology.

I read the words endometroid adenocarcinoma for the first time, I didn’t comprehend until much later that I had learned my enemy’s name. Derived from the words “adeno” meaning pertaining to a gland and “carcinoma” meaning a cancerous tumour, the disease is a formidable adversary. One organ that is commonly affected includes the lining of the uterus, or endometrium. Adenocarcinoma is even more frequently diagnosed in the colon or the lungs. My surgical pathology report contained many confusing and ominous terms. I never thought of my reproductive organs as a possible death sentence, but that’s what the report seemed to be implicating. References to yellowish tan neoplasm and a uterine tumour measuring 11 centimetres at its greatest dimension both sickened and terrified me! At another point I started to pity my tiny right ovary. To make the personification complete, I’m sure she fought a valiant battle, but she was strangled by a separate tumour of about 7 centimetres.

21

I’ve come a long way since I first read that menacing pathology report nearly a year and a half ago. My ability to deal with medical information and to collaborate with my health care team has improved since then. Today, I offer the following advice to cancer patients and their caregivers. In a broader sense these recommendations could probably apply to anyone facing a serious health crisis.

Knowledge is Power

You are the most important member of your cancer care team and it’s essential to actively participate in your care. Pay close attention throughout the process of your care and participate fully in discussions with your oncologist and other medical specialists. Don’t hesitate to raise any concerns with your oncologist or with other appropriate health care professionals on your cancer team. If something doesn’t seem right or you sense that certain issues aren’t being addressed speak up!

Find the Right Balance

Never in my life have I felt so simultaneously overwhelmed by an abundance of medial information and frustrated by a lack of it. This ambiguity of emotions is understandable in cancer patients as they undergo treatment for some of the most complex and difficult to understand diseases within the realm of medical science. Personally, I’ve discovered that tension and anxiety occur unless a balance of information about my cancer is achieved (not too much and not too little). In my opinion, this ideal equilibrium will vary. It also depends largely on an individual’s psychological makeup and is more often than not impossible to maintain constantly.

Use Only Reliable Sources

Simply explained, every cell in the body has a tightly regulated system that dictates when it needs to grow, mature and eventually die off. Cancer occurs when cells lose this control and divide and proliferate indiscriminately. Theories, treatments and possible explanations for cancer are abundant. They range from the factual or medically proven to the bizarre, absurd and downright dangerous. Regrettably there are a few contemptible individuals who knowingly try to profit from cancer patients or exploit our unique physical, emotional and psychological needs. I appreciate that the most specific and reliable information comes from my oncologist and the related medical professionals on my cancer care team. When I access printed materials or the abundance of online resources that are available, I am highly selective. I’d like to conclude this post by listing a few prominent organizations that I recommend.

The Canadian Cancer Society   http://www.cancer.ca

The American Cancer Society   http://www.cancer.org

CancerNet  http://www.cancer.net/cancer-types/uterine-cancer

 Ovarian Cancer Canada   http://www.ovariancanada.org

occ