For some years now, US-American obstetrics and gynecology rotation students at the University of Chicago's Pritzker Medical School have been listening to an optional lunch session of survivors of ovarian cancer sharing stories about the shock of diagnosis, painful treatments, and constant worries about whether Your cancer will come back.
Last year, listening to women's experiences was a mandatory part of their medical education. The hope is that by humanizing the disease, this relatively rare cancer will appear on the radar of a new generation of physicians and change that shared patient narrative: "My doctor did not take my symptoms seriously until it was too late."
"We felt it was important for students to not only learn about the biology of ovarian cancer, but also to know that every patient has a whole person with a story behind them," says Nita K Lee, a gynecological oncologist at the University of Chicago ,
Changing the curriculum of the Faculty of Medicine is a sign that the issue of ovarian cancer is being taken seriously.
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This is part of a flood of hopeful progress recently, including new blood tests to detect the disease at an early stage, new genetic insights into dozens of cancer subtypes and new therapies.
This year, the Centers for the Control and Prevention of Diseases for Public Awareness have expanded their consumer website on ovarian cancer and are planning to launch broadcast advertising.
In the past, ovarian cancer has a lack of good news compared to other cancer success stories. It is deadlier and underfunded.
Until recently, the disease has not benefited from new treatments for more than 40 years.
Approximately 22,240 US women were diagnosed with ovarian cancer in 2018, and 14,070 women died in the same year, according to government surveillance data.
The reason is that more than three quarters are diagnosed when the cancer has progressed, and survival rates are low: only 47 percent of patients survive five or more years.
This means that, in contrast to the 3.4 million US breast cancer survivors who form an army of activists marching for research funding and attention, only 225,000 US women living with ovarian cancer do their thing.
Even their characteristic color – teal – is understated.
"Sometimes it's hard to feel like a stepchild in a blue-green dress," says activist Ellen Engle, a project manager from Potomac, Maryland, who was diagnosed with stage 4 ovarian cancer four years ago at the age of 47.
She is the administrator of the Ovarian Cancer Support Group on Facebook.
"We hear so many stories from women whose symptoms have been dismissed," she says. "They are told that they go through menopause or have irritable bowel syndrome."
Engle leaves cards with information that warn women about the often-overlooked symptoms of ovarian cancer – bloating in the abdomen, changes in appetite, pelvic pressure, low back pain, or frequent urination – at airports, fast food restaurants, and a recent concert issued by Elton John.
According to Bobbie Rimel, a gynecologic oncologist at the Cedars-Sinai Medical Center, Los Angeles, women may experience persistent gastric bloating on gluten or lactose sensitivities that they wish to treat with probiotics or elimination diets.
"I see so many people in my practice who let it run for five or six months because they thought they could figure it out," she says. "But in the end, I find out it's cancer, and it's really sad."
However, it is not just up to patients and doctors to be more vigilant. The area lacked good diagnostic tools. The most widely used test, developed in the early 1980s to measure a protein called CA 125, finds only 80 percent of cases and is false-positive, as the protein may also rise during menstruation and pregnancy.
It is more effective when combined with a transvaginal ultrasound that can detect an ovarian mass. However, as current imaging technology can not detect if this mass is cancerous, women are usually diagnosed with surgery to remove part or all of the ovary.
"I do three to six surgeries for every cancer I find," says Rimel. "And I often do not find them early enough to improve patient survival."
In search of the breakthrough in early detection that would dramatically improve mortality, scientists are looking for clues in women's blood to determine if they recognize the cancer before it becomes deadly.
In February, researchers from the University of Kansas announced that they have developed a cost-effective method for finding cancer markers in cell by-products known as exosomes in a drop of blood.
At the University of Texas's Anderson Cancer Center in Houston, ovarian cancer researcher Robert Bast, who is co-discovering the CA 125 test, is developing another blood test that allows multiple markers to be simultaneously measured and scraped at least one year after detection the patients were traditionally diagnosed.
"We want to be able to detect less cancer, rather than waiting for the tumor to deliver enough cells into the abdominal cavity," says Bast.
Other researchers are exploring new genetic sequencing techniques to understand how microRNA, short molecular segments that knock out part of a person's genome, is differently expressed in women with ovarian cancer.
The team of Kevin Elias, a gynecological oncologist who runs a laboratory at Brigham and Women's Hospital in Boston, is planning a clinical trial to study women's blood samples taken before they experience any symptoms and diagnosed with cancer has been.
The goal is to see if micro RNA patterns could have predicted who would get the disease later, and to gauge the magical moment when surgical intervention is needed to remove tumors.
"We try to find the lead time to catch women when they are high-risk and curable," says Elias.
He says a resulting test will be offered first to 20 percent of women who have a congenital risk for ovarian cancer and then to the general population.
There is also hope that new biological knowledge about ovarian cancer will lead to more effective personalized treatments and longer survival.
"We learn that ovarian cancer is not just a disease, it's made up of many subtypes with different signaling pathways and risk factors," said Beth Karlan, a gynecological oncologist at the David Geffen School of Medicine at the University of California, Los Angeles.
For example, one type of ovarian cancer tumor may be the size of a grapefruit that does not spread while another pea-sized subtype rapidly metastasizes.
"We can not continue to treat women as a 'one size fits all'," she says.
Recently, the US Food and Drug Administration approved targeted oral therapies called PARP inhibitors that kill cancer cells.
Although they are intended for ovarian cancer patients with genetic BRCA mutations accounting for 15 percent of cases, researchers are investigating whether they can help women with other subtypes of ovarian cancer.
Another drug called Bevacizumab, marketed under the name Avastin, which stops the growth of blood vessels that nourish cancer cells, has been successful in combination with chemotherapy in women with recurrent ovarian cancer. (In the last US summer, it was admitted as a first treatment after surgery.)
Other targeted drugs and immunotherapies that activate the immune system to combat cancer are in clinical trials. However, the range and success rate of current treatment options are oppressively limited.
In the meantime, women should use new genetic sequencing tools to identify their cancer subtype and ask their doctor if they can participate in the right clinical trial instead of "moving from chemo to chemo in the hope that something will work "says Laura, biotech manager of San Diego Shawver, who founded the Clearity Foundation in 2008.
The non-profit group helps women with ovarian cancer to genetically profile their tumors so they can be better matched to appropriate treatments.
"Women need to be aware that this technology exists and is usually covered by insurance," she says.
What is frustrating, according to Shawver, is that many women who are undergoing multiple chemotherapy regimens – the current standard for the treatment of recurrent ovarian cancer – may not be eligible for a clinical trial of new drugs.
In addition, their tumors may have changed as a result of multiple treatments, making the drugs that originally acted on their subtypes less effective.
"Your best chance for a cure is your first treatment and not if you've missed five other options," says Shawver.
Before Liz Laats died of ovarian cancer at the age of 46 three years ago at the age of 46, the threefold mother from the San Diego area had undergone 88 chemotherapy sessions during ten regimens over six years, which she had exhausted with chronic bone pain.
"At first, the doctors gave her the treatments they said would have done the most to most people, but they did not know how to treat them specifically," says her husband, Andy Laats, who introduced her to more than two dozen doctors brought in the United States.
"We kept thinking:" There has to be a cleverer doctor somewhere who knows. "But all you have to do is try to connect those dots," he says, adding that Liz is the "best out of many crappy options, "including drugs that have been tested in clinical trials in mice or lung cancer patients.
"It felt like sliding and laddering the game, you get small leaps of hope and then fall down," says Laats.
Despite the uneven progress, Lee of the University of Chicago wants the next generation of physicians to know that the history of ovarian cancer is changing in a small and meaningful way for the better.
"I do not want to gloss over this terrible disease, but I want students to see women live longer," she says of the school's collaboration with the Survivors Teaching Students program of the Ovarian Cancer Research Alliance.
"I want them to see the images of their families and the travels that they undertake, I want them to know that women thrive, and I want them to have the opportunity to recognize the illness early enough for a life to save. & # 39;