Breast cancer patients need research, and research needs patients

Funding for breast cancer research -- or the vaguely defined "breast cancer awareness" -- is only one step in the search for new treatments. Clinical trials are crucial.

And they seem to be short of participants, despite the number of women diagnosed with invasive breast cancer each year -- about 192,370, according to American Cancer Society statistics. Another 62,280 will be diagnosed with the non-invasive form known as carcinoma in situ.

As Shari Roan wrote recently:

A year ago, U.S. researchers launched what they deemed a high-priority study to determine if women with an often-fatal type of breast cancer could live longer by taking a specific combination of drugs. If the study found that to be true, the average rate of survival – four years – could be significantly extended.

A worthy question to address? It would seem so. But the answer may be a long time coming.

The U.S. arm of the international trial got underway nine months behind those in other countries. And researchers now expect to enroll only 350 U.S. patients of the original 3,500 sought.

Before drugs and therapies to save lives or reduce suffering can reach the market, they must be tested to ensure they’re safe and effective. But the reluctance of Americans to participate in clinical trials has been a serious drag on medical research."

So where should breast cancer patients start? BreastCancerTrials.org is one place. So is ClinicalTrials.gov and TrialCheck from the Coalition of Cancer Cooperative Groups. They offer long lists of solid, potential-filled research efforts.

For those fortunate enough to be unable to participate in a clinical trial, buy pink if you want. But keep in mind that only a fraction, often a hard-to-pin-down fraction, of your money goes to organizations funding research. As an earlier Times story points out: "The pink marketing strategy brings in a lot of money for nonprofits, but no one keeps track of it as a whole."

The purchase of a pink product is not actually required in order to support breast cancer research, of course. Some organizations, it's been said, will accept donations directly. They might even accept them in months other than October.

Here are guidelines from Health.com that explain how to donate wisely: "Picking a breast cancer charity to donate to can mean sifting through hundreds of options. You can narrow your search by deciding where you want your money to go -- whether it’s education, outreach, awareness, or treatment. Here, we look at a range of charities -- from large to small, national to local -- that focus on funding research, the crucial component of the search for a cure for breast cancer."

-- Tami Dennis

Photo: Los Angeles Times

Comments

[Susan Hochstetter]

When diagnosed with invasive breast cancer, I was asked if I would participate in a research study. However, for this particular study one would not be able to have some of the treatments that were working well at the time. So, why would I have participated in it? Take more of a chance that it "might" help me? I don't think so.

[Julian Lieb,M.D]

The idea that antidepressants might be effective for cancer was first studied fifty years ago, and proof has finally emerged. To verify, access Medline or Pubmed, and enter “antidepressants” and “cancer.” With patience, you may retrieve more than sixty studies showing that antidepressants destroy cancer cells, inhibit their proliferation, convert multidrug resistant cells to chemotherapy sensitive, protect nonmalignant cells from damage by ionizing radiation and chemotherapy toxicity, and target the mitochondria of cancer cells, while sparing those of healthy ones. Antidepressants can arrest cancer even in advanced stages, occasionally reverse it, significantly extend life, and have shown effectiveness in malignancies often resistant to chemotherapy and radiation. We know that antidepressants have potent anticancer properties applying to many malignancies. How can we possibly justify more research that does not take this into account?

[Ellen]

Participate in a drug trial?

Before you do, visit http://www.preventcancer.com, the website of Samuel Epstein, M.D.

[KMV]

As someone hoping to enter the field of cancer research in the future, I truly appreciated your enlightening post which not only builds awareness of the need for more patient recruitment, but also further discusses how readers can get involved in the fight against breast cancer. You discuss the critical issue that although funding for breast cancer research is crucial, clinical trials are of equal importance, which is a fact that I believe many people often overlook. It is thus an urgent problem that, as you have noted, clinical trials "seem to be short of participants despite the number of women diagnosed with invasive breast cancer each year." Considering how this month is Breast Cancer Awareness Month, I understand your focus on how this issue affects breast cancer research, but is this problem truly specific to only this type of cancer and no other type? Although raising awareness is a good starting point, I think in order to solve this problem we should take a step further and evaluate why many patients who are actually aware of trial opportunities still refuse to participate.

In a study published in The Lancet Oncology, researchers found that two main barriers preventing patients from participating in clinical trials are potential side effects and concern they may receive a placebo instead of actual treatment. What it ultimately comes down to is an issue of fear--that the experimental treatment will be either ineffective or more harmful than regular treatment. This fear is only magnified after reading articles such as one in the New York Times where some clinics only halfheartedly do research "aimed at polishing a doctor's résumé or making a center seem at the vanguard of cancer care," or studies such as one in The Oncologist where 35.5 percent of cancer studies prove fruitless, or another study published in the Annals of Oncology where 30 percent of clinical trials were prematurely halted by pharmaceutical companies at the sight of positive results in order to rush their product to market and make a buck. With such discouraging facts, why would anyone, especially someone already undergoing rigorous cancer treatments, choose to take the extra trouble of participating in clinical trials? The fact is, even if awareness of trial opportunities is increased, it still would not change the negative attitude toward clinical research. It thus becomes of increasing importance to dispel of misconceptions and focus on the fact that successful clinical trials do exist and that there are many potential benefits of participating, not only to the patient but to the entire cancer community as a whole. I think in order to effectively improve the progression of cancer research, what we really need is a reformation of every component involved, from doctors encouraging positive outcomes of clinical trials and fixing patients' misconceptions, to legislation preventing pharmaceutical companies from cheating participants through early termination of trials.