Cancer is one of the scariest words in medicine. Decades ago the diagnosis seemed like a death sentence. Many doctors didn’t even tell the patient because they didn’t want to deliver such bad news.

Today, cancer is still not good news, but there are effective treatments for many types of cancer. Exciting new advances are under development.

In the old days patients were dependent on the knowledge and skill of the cancer doctor who treated them. Today, the Internet has opened the door to the latest breakthroughs and centers for excellence.

Tom’s experience offers a good example. He was diagnosed with a life-threatening blood cancer called multiple myeloma in 1991. The expected survival at that time was about three years. Tom got excellent care at a respected cancer center. Initially he did well after a bone marrow transplant. As time went on, though, he wasn’t content simply to follow doctors’ orders.

Instead of accepting the standard regimen of the day, Tom went online and searched for promising new multiple myeloma treatments. He learned about a clinical trial with thalidomide. Although this compound was vilified as the agent responsible for horrific birth defects, cancer doctors were beginning to experiment with thalidomide’s ability to control myeloma.

Tom ended up at the Myeloma Institute for Research and Therapy at the University of Arkansas. While there, he got the most advanced treatment available for his cancer.

Tom died last year, more than fifteen years after his original diagnosis. During that time he wrote several books and a research paper called “e-patients: how they can help us heal health care” (www.acor.org/e-patients).

Tom served as a role model for what he called e-patients (individuals who are equipped, enabled, empowered and engaged in their health care decisions). He envisioned health care as an equal partnership between e-patients and the health professionals who support them.

The Internet has made this approach possible. It has revolutionized access to information about new treatments. Patients gain support and knowledge from online communities. One of the best is ACOR (Association of Cancer Online Resources at www.acor.org). This Web site provides email lists in which cancer patients offer each other support and information, including valuable updates about clinical trials.

Many Web sites post information on clinical trials for cancer. They include: www.cancer.gov/clinicaltrials, with links to ongoing clinical trials and National Cancer Institute fact sheets; www.clinicaltrials.gov/, which offers information on government and privately funded clinical trials; www.cancertrialshelp.org/, covering trials through ten of the nation’s federally funded cancer Cooperative Groups, as well as cancer centers, academic medical centers, and patient advocacy groups; and www.cancer411.org/clinicaltrials/index.asp, offering a directory of clinical trials by cancer type. Basic information on clinical trials is available at FDA’s Clinical Trials page (www.fda.gov/oashi/clinicaltrials).

Becoming an e-patient increases the likelihood that a person will be able to find the resources and support that she needs. The Internet is changing the nature of health care for cancer and other serious conditions.

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  1. James
    Reply

    I saw http://www.peoplespharmacy.com/archives/editorial/cancer_patients_thrive_online.asp and wanted to mention a new site for biomedical research:
    http://www.biomedsearch.com
    The site is free, and perhaps the most comprehensive biomedical site on the web. It has all PubMed and MedLine documents, plus mililons more (often in full text).
    It also has account features such as portfolios to save documents, the ability to share documents (and comment on them) between users, and set up automatic alerts.

  2. BB
    Reply

    There is a steep downside to using email lists that isn’t discussed in this article. Absent expert medical advice, patients may use the experience of others as a surrogate for medical information, and sometimes with fatal results. I’ve also observed the tendency of patients to follow the advice of others who are mixing herbal remedies with therapeutics, without first discussing this with a physician. How many clinical trials have been confounded because patients were doing this? How many useful therapeutics never made it to market? Patient empowerment is good. But using email lists as a replacement for actual medical advice is bad. Unfortunately, it’s all too common.

  3. Malvia Wilson
    Reply

    I have both breast cancer and cervical cancer. I smiled at your statement e-cancer patient and health professional.
    When I was told I had breast cancer, I had the tumor removed and had it tested. It was malignant and fast moving. I was told I had to have chemo and radiation immediately. I said “NO” I am 74 and do not wish to be sick the remainder of my years.
    Doctors could not understand this. I was told without conventional treatment I would die. They gave me 18 months to 3 years. With treatment I would survive 5 years. I still said no. I changed the way I eat (lots of veggie juice). Got off most of the drugs I was taking and take a couple of supplements–one is selenium. While my doctors are still upset I do not follow their
    suggestions (a couple refused to see me again), I am into my third year since diagnosis, and I feel great.
    My problem is getting doctors to prescribe the tests necessary for a cancer patient, and I get upset that I cannot get the tests without a doctor’s prescription. They say as long as I won’t have treatment, I don’t need the tests. Thanks to the internet I was able to make an informed decision about my treatment and did not just get the doctor’s point of view.
    Another complaint is that I refused a mamogram. My breast has a lot of scar tissue and I refuse to have it squeezed in that machine.
    Techs at the hospital will not perform an ultra-sound
    or MRI (ordered by my doctor) unless I have a mamogram first. Who are they to tell me how my medical treatment will go?
    By the way in California I am told doctors can refuse to treat you for anything if you refuse conventional treatment for cancer. They do not have to help you deal with dying what they describe as a painful death.

  4. Marc Wolfgram
    Reply

    Twelve years ago when I was diagnosed with stage 3 esophageal cancer there was no credible online resource. At that time my prognosis was 10% 5 year survival, and we had to dig up information the hard way. Fortunately I met a radiation oncologist on an AOL health forum within weeks of my diagnosis and he helped us to become empowered in seeking the best treatment.
    To give back this gift, My wife and I became active in the online world, and for more than 11 years we have been list managers for ACOR’s EC-Group. Today we are approaching 2,000 subscribers on that list alone, and ACOR has more than 100 cancer specific lists empowering patients to seek excellent medical care and hopefully better outcomes.
    It’s amazing to watch the positive interaction and support that these e-communities provide, especially for the rare cancers. Connecting patients with each other world-wide has had a tremendous impact on survivability and quality of life.
    Thank you for your timely article.
    — Marc

  5. Trish Miller
    Reply

    Because my family has genetic cancer. I was already on an ACOR list (http://www.acor.org/mailing.html) when I got my own cancer diagnosis. When I was diagnosed with endometrial cancer, I told my husband, then joined the appropriate support group, asked for suggestions, and got good advice within mnutes. Information I found on ACOR email support lists has saved my sister’s life and helped me deal with a very rare adverse side effect of radiation treatment. Emotionally, I feel connected and supported in a way that my family and friends (those who have never experienced cancer themselves) were not able to help me with. I now help run the ACOR list for kidney cancer which killed my mother, and affected my uncle and sister, and started a list for people with more than one primary cancer.

  6. Mary Brandes
    Reply

    I wonder what the course of my carcinoid cancer would have been had I not purchased a computer and joined an internet support group and gained access to so much information and support. Perhaps my treatment might not have been different since I am treated at a large tertiary care center, but my mental state would have been quite different.
    I might never have communicated with other carcinoid survivors and would have been so much more scared and lonely. I would not know of the variety of experiences people have had with the disease and with the medical attention it gets.

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