By: Annette McElhiney
I’ve mentioned frequently, I’m not a medical doctor or a scientific researcher. I’m simply a former nurse, retired college English and Womens Studies Professor, and an 8-year survivor of IIIC ovarian cancer who wants to improve my knowledge about ovarian cancer. As an avid reader of the New York Times, I spend my Sunday afternoons reading through the Book Reviews and the magazine. On May 15, 2015, the magazine included six articles on “The New Anatomy of Cancer.” While I found the information valuable in all articles, I was very dismayed to discover ovarian cancer wasn’t even mentioned as a variety, except in a brief reference to the screenplay “Wit” about an ovarian cancer survivor.
I want to share, with an audience, who could be affected positively, some very interesting trends from these three articles in the New York Times Magazine.
In the article “Written on the Body,” Ryan Bradley reminds us that for years cancers have been grouped by where they occur in the body. According to most statistical tables quoted by Mr. Bradley, the most survivable cancers, based on 5-year survival rates, are prostate 99%, thyroid 98%, testicular 96%, melanoma 92%, breast 90%, and Hodgkin’s lymphoma 86%.
The percentage of cancers occurring in women, are 30% other (I guess ovarian cancer falls in that category), breast 29%, lung 13%, colon 8, bladder 7%, thyroid 6%, lymphoma 4%, and melanoma 3%. Again, ovarian cancer isn’t mentioned, yet those of us who are survivors know that while nearly 22,000 women are diagnosed every year, nearly 14,000 die. So personally, as an ovarian cancer survivor, I felt somewhat overlooked as I read these articles. But realistically, I know that ovarian cancer is a rare disease and receives less attention and less funding for research than most of the common cancers.
In the past, also, the number and availability of clinical trials based on each location of cancer in the body reduced the mortality rate of that particular kind of a cancer. If survivors have access to a large number of trials and the data coming out of them, survival rates improve in that cancer. In large urban areas, cancer, or academic centers, the availability of trials is high, even for ovarian cancer. But that is not true for women in rural or semi rural areas. Therefore, ovarian cancers often continue to recur, patients become resistant to treatment after treatment regime, and when approved drugs are no longer available, the patients have few choices left! In urban and or large treatment centers, the final suggested option available is a phase I trial, if one is available,; that trial may or may not work.
Sixty years ago, with the advent of cytoxic or poisonous chemo drugs, treatment for each cancer location dictated the types of chemo that were to be given. Siddhartha Mukherjee writes in his article “Doctors Without Borders,” hospitals and medical schools required oncologists to memorize the chemo combinations like Adriamycin, bleomycin, vinblastine and dacarbaxine (A.B.V.D) to treat Hodgkin’s lymphoma. The protocol was standardized and all patients with Hodgkin’s Lymphoma were treated with the same drugs. Changing this protocol was discouraged and sophisticated equipment was developed to prohibit any deviation from this set protocol.
Today, researchers are rethinking the process of grouping treatment and clinical trials by location.
In 2000 a break through occurred when the Human Genome Project enabled physicians and researchers to sequence the genomics of cancer cells. Concurrently, they recognized a certain uniqueness to each person’s cancer cells that required a more individualized treatment of patients’ tumors instead of a “one size fit all model!”
Today, with the rapidly growing field of molecular profiling and precisely targeted non toxic drugs, Sidhartha, Mukherjee, in “Doctor Without Borders” says the new science requires oncologists to work less by the books and to improvise more. One tumor may have a different combination and arrangements of genes totally different from another. Consequentially, the patients’ responses to treatment with specific drugs will be different,
So this brings up the question of how do we group patients in clinical trials? By location in the body, as we have been doing, or by molecular profiles?
A writer, Gareth Cook, in “The Lazarus Effect,” in this same New York Times Magazine says “to make the shift to precision oncology,” one has to regroup clinical trials into “basket trials” which recruit patients based on their own genetic signatures, not the cancer’s physical location in the body. That means ovarian cancer patients whose genetic profiles look like a kidney cancer patient’s profile (or even of another “body location” cancer) and have similar genetic signatures will be put in the same basket trial. Even within that “basket,” the genetic pathways or switches for the cancer may be different as molecular signatures are very different. And of course, the researchers running those trials need to be familiar with the mechanism through which a particular treatment has worked.
So, how then do you ever find these patients with similar signatures? The president’s 2015 $202 million Precision Medicine Initiative “seeks to study one million American volunteers to learn how genetic and other data might be used to tailor treatment.” As Cook notes, tracking down patients who are treated in geographically diverse areas is complex because their medical records and genetic privacy are currently heavily protected.
Therefore, recruitment of patients who will volunteer their information is crucial! He says already in only 6 months over 1,800 metastatic breast cancer patients have joined the list including “exceptional respondents.” The information is out there, but if one physician has little of his/her own experiences using precision medicine, he/she has the option of working collaboratively with others who do have the necessary experience.
Finally, Cook discusses the groundbreaking “Count Me In Project.” Any patient may make his/her medical records and DNA available to researchers. Think what a treasure trove this can be with the help of properly informed interpreters with experience! But Cook knows that in addressing a cure for cancer, “we face an enemy that is resourceful, changeable, and merciless.”
Hopefully, if these trends continue, basket trials will become available to women with ovarian cancer, oncologists will use molecular profiles to guide treatment, from these trials additional information about treatment will become available, and the survival rate for us will improve. However, that will require researchers, leaders, founders and patients to collaborate, so we can move closer to an ovarian cancer cure!
To read more of Annette’s blog posts on The Clearity Portal, click here.