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Cancer, Patient Care

How a kidney cancer survivor became a partner in his care

How a kidney cancer survivor became a partner in his care

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; this month’s column comes from cancer survivor and advocate Michael Lawing.

My life changed forever on a cold rainy November afternoon in 1997 as I sat in a crowded emergency room. A surgical urologist knelt beside my chair and uttered five words, “You have cancer; it’s bad.”

A week later, the day after Thanksgiving, a huge tumor that had completely enveloped my right kidney was removed.

Prior to that diagnosis I had never heard of kidney cancer and had little experience with the medical community. I had not been to a doctor in years and viewed that profession as one filled with persons who had a good education, commanded a lot of respect, had a luxurious lifestyle, and enjoyed a life of relative ease. As it turned out, I was not only ignorant about kidney cancer, I had a lot of misconceptions about doctors and the entire medical profession.

I now view medical appointments in much the same way that a salesperson would view appointments with prospective clients.

In 2000, I was referred to a specialist in a medical center some 90 miles from my home. This oncologist was knowledgeable about the only treatment that had any degree of success in kidney cancer, a very rigorous infusion therapy with many side effects that required hospitalization.

A year later, cancer was found in lymph nodes in my abdomen, and I entered the hospital to begin treatments with interleukin-2 (IL-2). Although I had been impressed by the patience and skill of this doctor, it was during the IL-2 treatments that I began to really see his commitment and dedication to his patients.

His daily schedule was impressive. The doctor would arrive each morning at 6 a.m. to review the treatment notes of the two or three patients receiving IL-2, pay each of us a visit and then would be off to see patients in the clinic or to perform surgeries. He would usually stop by during the day and he would always come by in the afternoon or evening before going home. That visit would often be after 6 or 7 p.m.

In addition to those visits, he had to be called by the nurse prior to giving an infusion to a patient. Since the patient could receive an infusion as often as every eight hours if everything was okay, this meant a call to his home in the night; sometimes he would receive several calls if patients were on different schedules.

In the ensuing years since those treatments, I’ve come to realize that the vast majority of doctors, nurses and other healthcare professionals have a very similar commitment and passion for their work. It is therefore only reasonable that I should honor that commitment and passion when I’m seeing them for an appointment.

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Cancer, FDA, In the News, Science Policy, Women's Health

Gynecologists call for revision of FDA ruling on device to remove uterine fibroids

Gynecologists call for revision of FDA ruling on device to remove uterine fibroids

6095122430_9cf3ac4ec8_zA group of gynecologists is calling for the Food and Drug Administration to reverse its 2014 ruling banning the use of a device called a power morcellator to remove uterine fibroids, or non-cancerous masses also known as leiomyomas.

The ruling stemmed from several high-profile cases and a concern that morcellators could chop up and spread tissue that might contain a rare but deadly cancer known as leiomyosarcoma. The FDA overstated the risk of morcellation and failed to consider the risks involved in more invasive surgeries needed to avoid using a morcellator, said Jonathan Berek, MD, the chair of obstetrics and gynecology.

Berek is the senior author of the paper published today in Obstetrics and Gynecology and one of 48 gynecologists, oncologists and women’s health advocates who sent an open letter to the FDA yesterday calling for a revision of the ruling.

With a morcellator, surgeons can remove fibroids with very small incisions, usually with a laparoscope, reducing the complication rate and speeding the recovery time needed for fibroid removal or hysterectomy using a large incision, Berek said. But the FDA estimated that 1 in 458 women undergoing the procedure could have an undiagnosed leiomyosarcoma that could be spread by the morcellator.

The gynecologists, with lead author William Parker, MD, from the University of California-Los Angeles, say the FDA is overstating the risk, because recent data analyses put the likely risk at no higher than 1 in 1,550-1,960 cases. In fact, a recent population-based study placed the risk as low as 1 in 4,360 women having surgery for fibroids. In addition, it isn’t even certain that morcellators actually spread the cancers, Berek said.

“A leiomyosarcoma is a highly malignant, rare tumor that tends to spread readily, most often prior to surgery of any type, regardless of whether morcellation is used in the operation,” he told me.

The ruling has had the unintended consequence that many women who might have benefited from a minimally invasive surgery, with lower risks, now undergo a more risky, invasive surgery, he said. The authors list 10 procedures affected by the FDA’s ruling.

In the paper, they suggest six steps that could improve the FDA’s ruling, including advising women of the risks involved with power morcellation and conducting more research into the biology of these rare malignancies.

Previously: Stanford expert weighs in on ovarian0-cancer screening recommendation, Stanford researchers protest NIH funding restrictions and “A historic moment for women”: FDA approves the first drug to treat hypoactive sexual desire disorder
Image by Lady Ro

Big data, Cancer, Chronic Disease, Precision health, Research, Stanford News

A dive into patient records uncovers possible connection between cancer treatment, Alzheimer’s

A dive into patient records uncovers possible connection between cancer treatment, Alzheimer's

Shah

When we think of patient medical records, a lot of us think of billing and coding and maybe of health-care providers communicating with one another about how patients are doing. But increasingly medical records are becoming grist for the big-data mill.

According to Nigam Shah, MBBS, PhD, associate professor of biomedical informatics research at Stanford, it’s now possible to artfully extract important biomedical information from pre-existing patient medical records. Such data can be anonymous for the patient, and it’s virtually free for researchers, especially compared to the high cost of lengthy clinical trials that enroll thousands of people.

A just-published study by Shah and his colleagues used patient records to examine a suspected connection between a treatment for prostate cancer and the subsequent risk of developing Alzheimer’s disease. Among a group of about 17,000 prostate cancer patients, those treated with a medication that suppresses testosterone — so-called androgen blockers — had nearly twice the overall rate of later developing Alzheimer’s disease. In absolute numbers, more people are likely helped by the androgen blocking treatment than hurt, but the results are sobering.

The dilemma this finding raises — to take the drug or not — could be solved with a precision-health approach that would clarify which patients should take androgen blockers and which ones should pass. The trick will be to sort the prostate cancer patients who can benefit most from androgen blockers from those whose risk of developing Alzheimer’s is most likely to be increased by the drug.

With any luck, patient medical records can help provide that answer, too.

Previously: Stanford-based Alzheimer’s Disease Research Center to be launchedNew technology enabling men to make more confident decisions about prostate cancer treatment and How efforts to mine electronic health records influence clinical care
Photo of Nigam Shah by Steven Fisch

Cancer, Neuroscience, Research, Science, Stanford News

“Chemobrain” studied by researchers at Stanford, MD Anderson

"Chemobrain" studied by researchers at Stanford, MD Anderson

5490361039_7af0ae216b_zIt’s an unfortunate fact that even successful cancer treatment can leave lasting scars. Surgeries are sometimes needed to remove tumors, skin can be permanently damaged from radiation therapy and powerful chemotherapy drugs can wreak havoc throughout the body.

One of the least understood lasting effects, however, is a cognitive deficit that some survivors describe as “chemobrain.” The difficulties they experience in focusing and remembering are attributed to the neurotoxic effects of chemotherapy. But it’s not been clear whether some drugs are worse than others in this regard.

Now Stanford oncologist Douglas Blayney, MD, and former Stanford faculty member Shelli Kesler, PhD, have published a study in JAMA Oncology assessing cognitive defects in a group of 62 breast cancer patients treated between 2008 and 2014. About one-third of the patients had received a class of chemotherapy drugs that are anthracycline-based, like doxorubicin; one-third received other chemotherapy drugs that were non-anthracycline-based; and the remainder received no chemotherapy at all.

As Blayney explained in an email to me:

Chemotherapy for breast cancer is often associated with cognitive problems in patients. However, it is unclear whether certain treatment regimens are associated with greater cognitive difficulties than others. In a small study, we showed that women treated with anthracycline-based chemotherapy had lower verbal memory, including immediate recall and delayed recall, compared with non-anthracycline chemotherapy treated breast cancer patients, and breast cancer patients not treated with chemotherapy.

Kesler, who has published before on chemobrain in breast cancer patients, is now at MD Anderson Cancer Center in Texas.

Although their results are intriguing, Blayney cautions that the study was relatively small and it’s too soon to start ruling out one type of chemotherapy over another. But it’s important to begin these types of analyses. He writes:

Patient-reported outcomes of cognitive dysfunction and psychological distress were elevated in both groups of women treated with chemotherapy compared with patients treated without chemotherapy.  Our study is hypothesis generating, involves small numbers of patients, there is no dose-response information available, and it is way too soon to abandon doxorubicin adjuvant treatment, which remains a valuable chemotherapeutic agent.  We are currently enrolling in a larger, longitudinal study of women measuring cognitive functioning before any treatment, after completion of systemic treatment, and one year later.

Previously: Wellness after cancer: Stanford opens clinic to address survivors’ needs,  A look at stem cells and “chemobrain” and Stanford study shows effects of chemotherapy and breast cancer on brain function
Image by Steve Snodgrass

Biomed Bites, Cancer, Research, Videos

From a molecular point of view: Cell adhesion, signaling pathways and cancer

From a molecular point of view: Cell adhesion, signaling pathways and cancer

Welcome to Biomed Bites, a weekly feature that introduces readers to some of Stanford’s most innovative biomedical researchers. 

To develop treatments capable of combatting metastatic cancers, or those that invade new tissue, researchers need to understand exactly how cells physically bind together. This process, called adhesion, goes haywire when a cancer goes on the move.

An effort to define the structural processes governing cell adhesion is just one of the projects Bill Weis, PhD, discusses in the video above. Weis chairs the Department of Structural Biology and is a professor of molecular and cellular biology. He also chairs the Department of Photon Science at SLAC National Accelerator Laboratory.

His team also examines a cellular signaling pathway governed by a growth factor called Wnt, which plays a key role in the development of undifferentiated cells into mature cells.

“All of these studies are from a molecular point of view. It’s very basic research where we are trying to understand the chemical and physical principles of the molecules,” Weis says.

Learn more about Stanford Medicine’s Biomedical Innovation Initiative and about other faculty leaders who are driving biomedical innovation here.

Previously: Liver stem cell identified in mice, 3-D structure of key signaling protein and receptor revealed and Using organic chemistry to decipher embryogenesis

 

Big data, Cancer, Genetics, NIH, Precision health, Research, Stanford News

Cancer’s mutational sweet spot identified by Stanford researchers

Cancer's mutational sweet spot identified by Stanford researchers

dots-1002903_1280I’m constantly fascinated by the fact that the cells that make up a cancerous tumor are each undergoing their own private evolution every time they divide. Unlike most normal cells, cancer cells are so wacky that even a small batch can morph into a highly variable mass within a few generations. As I wrote in a story last week:

In many ways, cancer cells represent biology’s wild west. These cells divide rampantly in the absence of normal biological checkpoints, and, as a result, they mutate or even lose genes at much higher rate than normal. As errors accumulate in the genome, things go ever more haywire.

Recently, oncologist Hanlee Ji, MD, the senior associate director of the Stanford Genome Technology Center, and postdoctoral scholar Noemi Andor, PhD, devised a way to measure the extent of these differences among individual cancer cells and to associate their effect with the virulence of the disease as a whole. They published their results today in Nature Medicine.

As Ji, who is also a member of the Stanford Cancer Institute, explained in an email to me:

Until recently the scientific community believed that a typical tumor was composed of malignant cells with very similar genomes. The advent of next-generation sequencing technologies has revealed that this is not the case, and that most tumors are a heterogeneous product of ongoing evolution. This genetic heterogeneity also explains why therapeutic interventions in advanced cancers are often unsuccessful: some cells within a tumor develop resistance to therapies. Understanding the extent of tumor heterogeneity and how it leads to drug resistance is a major challenge in cancer biology research.

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Cancer, In the News, Palliative Care

Popular author writes about the “the circle of caring for a dying person”

Dying roseThanksgiving is a time of gratitude, obviously. But for many, it’s also a time to remember loved ones conspicuously missing from the dinner table. Death and dying are tough topics, but worth talking about even during a holiday weekend.

Last week, one of my favorite bloggers and authors, Catherine Newman, wrote a powerfully moving piece for the New York Times about caring for a lifelong friend as she was dying. I’ve been a fan of Catherine’s since before her second child, Birdy, was born – faithfully reading her thoughts about motherhood and the weird blend of elation, terror, sadness and longing that accompanying the experience of raising babies into children into teenagers. We’re the same age, and our children have grown up together, in a way. I’ve given her book, Waiting for Birdy, to many friends and colleagues, and I consider her a friend I’ve just never happened to meet yet. So when she mentioned on her blog that she’d written about her friend for the Times, I clicked through instantly. And then started to cry.

The article, “Mothering my Dying Friend“, is powerful and sad and unbelievably beautiful. As Catherine writes:

In a Venn diagram of tending helpless people at the extremes of life, the circle of caring for a dying person overlaps almost completely with the one for caring for a baby. Both are repetitive, intimate, often gross, sometimes funny, weirdly frantic even as they’re crushingly tedious, and a total act of devotion. […]  And for all of your endless patience there is nothing at the end. Just death, and your only job is a kind of mothering right up to the lip of the abyss.

I know it sounds grim, but I promise you won’t regret reading. Once again Catherine reminds me that we’re all in this together. I’m no longer of an age where my friends are getting married and having babies. Instead we’re caring for dying parents, getting divorced or watching, gobsmacked, as our formerly helpless infants waltz off with the car keys and a promise to not be late. I hope I can weather these and other changes with the same grace and beauty with which Catherine cared for her friend during her last days.

Previously: Author-physician Atul Gawande on dying and end-of-life care Desire for quality end-of-life care crosses ethnic groups  and Stanford doctor on a mission to empower patients to talk about end-of-life issues 
Photo by Ben Rea

Big data, Cancer, Genetics, NIH, Precision health, Research, Stanford News

“Housekeeping” RNAs have important, and unsuspected, role in cancer prevention, study shows

"Housekeeping" RNAs have important, and unsuspected, role in cancer prevention, study shows

BroomsNot every character in a novel is a princess, a knight or a king. It’s the same for our cellular cast of characters. Most molecules spend their time completing the thousands of mundane tasks necessary to keep our cells humming smoothly. Many of these are referred to as “housekeeping” genes or proteins, and biologists tend to focus their attentions on other, more flashy players.

Now dermatologists Paul Khavari, MD, PhD, and Zurab Siprashvili, PhD, have found that a pair of housekeeping RNA molecules play an important role in cancer prevention. They published their findings yesterday in Nature Genetics.

As I explain in our release:

[The researchers] compared 5,473 tumor genomes with the genomes obtained from surrounding normal tissue in 21 different types of cancer. In many ways, cancer cells represent biology’s wild west. These cells divide rampantly in the absence of normal biological checkpoints, and, as a result, they mutate or even lose genes at much higher rate than normal. As errors accumulate in the genome, things go ever more haywire.

The researchers found that a pair of snoRNAs called SNORD50A/B had been deleted in 10 to 40 percent of tumors in 12 common human cancers, including skin, breast, ovarian, liver and lung. They also noted that breast cancer patients whose tumors had deleted SNORD50A/B, and skin cancer patients whose tumors made lower levels of the RNAs than normal tissue, were less likely than other similar patients to survive their disease.

The researchers used data from the National Institutes of Health’s The Cancer Genome Atlas to find that the RNAs are frequently deleted in tumor tissue. They further went on to show that the RNAs bind an important cancer-associated protein called KRAS and keep it from associating with an activating molecule.

“This is really last thing we would have expected,” said Khavari. “It was particularly surprising because my lab has been studying KRAS intensively for more than a decade, so it was quite a coincidence.”

The researchers believe that understanding more about how the RNAs inhibit KRAS activation could point to possible new therapies for many types of human cancers.

Previously: Listening in on the Ras pathway identifies new target for cancer therapySmoking gun or hit-and-run? How oncogenes make good cells go bad  and Linking cancer gene expression with survival rates, Stanford researchers bring “big data” into the clinic 
Photo by Rob Shenk

Cancer, Complementary Medicine, In the News, Research

“We need a breakthrough”: Cancer researchers call for more effective, lower cost therapies

"We need a breakthrough": Cancer researchers call for more effective, lower cost therapies

1024px-Tripterygium_regelii_1Cancer is wily. Although drug developers are continually crafting hard-hitting drugs, a variety of factors, such as a tumor’s genetic heterogeneity, mean that cancer usually comes out on top.

Something else is needed.

And that something, writes a panel of 180 researchers in a special issue of Seminars in Cancer Biology, is an array of treatments that bombard a series of targets. These treatments can be based on substances found in nature that are lower in cost and toxicity than many current treatments, the researchers write. Some of these compounds stem from plants, such as the Chinese herb Tripterygium wilfordii (although that herb, like many treatments is not without a downside: it also suppresses the immune system).

The team identified 74 molecular targets deserving of investigation and set up a framework for researchers to pitch in. And the time is now, researchers Anupam Bishayee, PhD, and Keith Block, MD, write in the introductory paper: “We have a long way to go before oncology can offer true comfort to most patients.”

Stanford oncologist Dean Felsher, MD, PhD, was part of the project. “This is an area that merits considerable attention and where interdisciplinary and international collaboration is needed,” he said in a statement.  “Our approaches to therapy are improving, but we need a breakthrough that can helps us address the problem of relapse.”

Previously: Researchers develop molecular target for brain cancer, Kidney cancer secrets revealed by Stanford researchers and Tool to identify the origin of certain types of cancer could be a “boon to doctors prescribing therapies”
Photo by Qwert1234

Cancer, Pediatrics, Research, Stanford News

A cure is not enough for young cancer survivors

flower-887443_1920I survived Hodgkin’s lymphoma as a young adult about twenty years ago, thanks to the chemotherapy and radiotherapy that I received at Stanford Hospital as part of a clinical trial.

Even back then, the focus of the research was on fine-tuning my cancer treatment to maintain an excellent likelihood of survival, while minimizing the long-term health problems due to therapy. I knew Hodgkin’s was unlikely to kill me, so I had to worry instead about future health issues caused by my radiation and chemotherapy.

People that survive cancer at a young age are expected to live many decades after diagnosis and treatment, so they are the most vulnerable population to long-term damaging effects from cancer therapy. Stanford’s Karen Effinger, MD, MS, and Michael Link, MD, explore this issue in an editorial published today in JAMA Oncology.

The editorial explains that it is critical to directly study the late effects in young adult cancer survivors, rather than the common practice of extrapolating from studies of children and middle-aged adults.

In particular, they discuss a new study by Katherine Rugbjerg, PhD, and Jorgen Olsen, MD, DMSc, from the Danish Cancer Society Research Center, which used the national Danish registries to compare the long-term risk of hospitalization in almost 34,000 5-year survivors of adolescent and young adult cancers with that of more than 228,000 age- and sex-matched population controls. Reported in the latest issue of JAMA Oncology, Rugbjerg and Olsen found that adolescent and young adult cancer survivors had significant health issues due to their treatment; however, these treatment effects were different than survivors of childhood cancers.

The editorial also discusses the late effects of pediatric cancer treatment on survivors’ neurocognitive development, which impacts education, employment and quality of life. Effinger and Link specifically describe a new study reported in JAMA Oncology by Kevin Krull, PhD, and colleagues from the St. Jude Children’s Research Hospital, which compared the neurocognitive outcomes in 80 adult 25-year survivors of a pediatric cancer with 39 controls. Krull concluded that the risk of neurocognitive impairment from cancer treatment was related to the development of chronic health conditions — rather than directly from exposure to high-doses of chemotherapy, as expected — but longitudinal studies are needed to sort out possible modifying factors.

The editorial authors conclude:

Going forward, we must apply our knowledge of late effects to improve monitoring and interventions for patients. While the progress made in the management of cancer in children and young adults has been gratifying, we must remember the words of Giulio D’Angio, who reminds us that “cure is not enough.”

Jennifer Huber, PhD, is a science writer with extensive technical communications experience as an academic research scientist, freelance science journalist, and writing instructor.

Previously: Study highlights childhood cancer survivors’ increased risk of future health problems, Questioning whether physicians are equipped to care for childhood cancer survivors and A cancer survivor discusses the importance of considering fertility preservation prior to treatment
Photo by klimkin

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