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Cancer

My last promises to her: Advocate for lung cancer awareness and live life to the fullest

My last promises to her: Advocate for lung cancer awareness and live life to the fullest

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 a patient advocate from California.

Don and Penny - smallI was diagnosed with Stage 4 Non-Small Cell Lung Cancer in June 2009. I have had numerous treatments of radiation and chemotherapy for the lung cancer, and six cycles of Gemzar for metastasis to my liver. I’m one of the fortunate few because only 16.8 percent ever reach the five-year mark. I’m stable today because of the targeted therapy pill Tarceva that I’ve been taking for almost five years.

All through my journey I have kept a positive attitude, focused on good nutrition and gotten plenty of exercise. I try to live my life by spiritual principles. I feel they all play an important part in my recovery and the reason that I’m still above ground.

The bad news is that I have cancer. The good news is that cancer has taught me to live life to the fullest. I never allow cancer to define me. I rarely miss an opportunity to hike, bike, or do anything that strengthens my immune system and keeps me out in nature.

In October 2011 I met Penny Blume, the love of my life, on a lung cancer support community on Inspire. Penny left this earth on Jan. 21, 2014 after battling small cell lung cancer for 32 months. Penny and I spent our time together traveling back and forth from New York to California. She passed at my home in Santa Rosa, Calif., after trying one last clinical trial at Stanford Cancer Center.

Penny and I turned to each other for emotional support to battle our cancers and fell in love. It was after a couple of months of texting and chatting on social media that we decided to meet. Penny flew to California for her first visit in January 2012, and the rest is history.

My relationship with Penny also marked the beginning of my advocacy work for lung cancer. It started when a friend of ours asked us to post our story on a lung cancer survivors group on Facebook. I posted something, and then Penny and I decided to repost it on Inspire, since it was the site that brought us together. In September 2012 our story was shared by ABC News and Good Morning America. In the following weeks, it was shared and tweeted all over the world.

My efforts to share our story and talk about lung cancer publicly have only grown stronger since then. I support Team Draft, an initiative of the Chris Draft Family Foundation, which is dedicated to raising lung cancer awareness and increasing badly needed research funding by shattering the misconception that lung cancer is a “smoker’s disease.” I’m also an advocate for The Lungevity Foundation and have attended two of their Hope Summits in in 2012 and 2013 and participated in numerous medical advisory panels. (Penny attended our first Hope Summit in 2012 where we recorded this message of Hope.)

Two years ago I was nominated by Lungevity to be a consumer reviewer for the Medical Directed Lung Cancer Research Program for the Department of Defense. As a veteran and lung cancer survivor I’m particularly grateful I can do my part through the DOD program.

November is Lung Cancer Awareness Month, and it will be a busy month for me: I’m  doing events with Chris Draft, Genentech and the Lung Cancer Research Program.

My last promises to Penny were that I would continue to live life to the fullest and advocate for lung cancer research and awareness. One day at a time I try to keep those promises to her.

Don Stranathan is a business development manager for a technology company in Rohnert Park, Calif. who is now on disability, as “fighting my cancer has become a full time job.” When not doing advocacy work, he is at the gym spinning or out hiking, biking and fishing with friends and family.

Previously: Tackling the stigma of lung cancer – and showing the real faces of the disease and A patient’s journey with lung cancer
Photo courtesy of Lungevity

Cancer, Medicine X, Videos

Tackling the stigma of lung cancer – and showing the real faces of the disease

Tackling the stigma of lung cancer - and showing the real faces of the disease

Stanford’s Medicine X is a catalyst for new ideas about the future of medicine and health care. This new series, called The Engaged Patient, provides a forum for some of the patients who have participated in or are affiliated with the program. The second installment in our series comes from Janet Freeman-Daily.

When I first learned I would be giving an ePatient Ignite! talk at Stanford’s Medicine X, I knew I wanted to speak about the stigma of lung cancer. I had frequently heard the first question typically asked of lung cancer patients – “Did you smoke?” – and I wanted to help change public perception of my disease.

I had plenty of material and preparation. I had actively blogged about my metastatic lung cancer journey for more than a year. I had researched statistics and funding disparities. I had gleaned patient perspectives via participation in online support forums and Lung Cancer Social Media (#LCSM) tweetchats. I also had years of public speaking experience, so I wasn’t anxious about getting up in front of an auditorium full of people.

What I didn’t have was knowledge of those who typically attended Medicine X, or how best to connect with them. I had never spoken publicly about lung-cancer stigma, certainly not to an auditorium full of people unfamiliar with my disease. After MedX ePatient adviser Hugo Campos helped brainstorm ideas, I wrote a speech – but it lacked something.

To figure out what was missing, I reach out to the online lung cancer community – patients, advocates and health-care providers I knew from support groups, Facebook, and Twitter. When Chris Draft of Team Draft reviewed my speech and slides over breakfast at Denny’s during one of his trips to Seattle, he smiled tolerantly when he saw my engineer’s fascination with graphs and pie charts. Then he made a point that changed the focus of my entire presentation.

Despite the dire statistics, the public will only care about the number one cancer killer when they can see that these patients could be people they love – a parent, sibling, child, friend – or even themselves. My speech needed to show the real faces of lung cancer, he explained.

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Cancer, Research, Science, Stanford News, Surgery, Technology

New molecular imaging could improve bladder-cancer detection

New molecular imaging could improve bladder-cancer detection

Joseph LiaoThey say a picture is worth a thousand words. For bladder-cancer surgeons, an image can be worth many lives.

That’s because a crucial method for detecting bladder cancer is to produce images that allow surgeons to identify abnormal-looking tissue, a method called cystoscopy. In a study published yesterday in Science Translational Medicine, Stanford researchers developed a new way to image the bladder that they say could detect bladder cancer with more accuracy and sensitivity than the standard methods. As described in our press release:

 The researchers identified a protein known as CD47 as a molecular imaging target to distinguish bladder cancer from benign tissues. In the future, this technique could improve bladder cancer detection, guide more precise cancer surgery and reduce unnecessary biopsies, therefore increasing cancer patients’ quality of life.

Identifying cancerous tumors can be challenging — some bladder cancer treatments cause inflammation, which looks very similar to abnormal, cancerous tissue. The only way to know for sure is to perform a biopsy, which can be stressful for the patient. As co-senior author Joseph Liao, MD, explained:

 Our motivation is to improve optical diagnosis of bladder cancer that can better differentiate cancer from non-cancer, which is exceedingly challenging at times. Molecular imaging offers the possibility of real-time cancer detection at the molecular level during diagnostic cystoscopy and tumor resection.

For their work, the researchers looked for a target that would distinguish cancer cells from benign cells and found it in CD47, a protein on a cell’s surface that cancer cells produce in higher quantities than normal cells. In previous work, co-senior author Irving Weissman, MD, developed a CD47 antibody that binds to the cancer cell’s surface and blocks the signal. They hypothesized it would be a good imaging target. More from our release:

 To test their hypothesis, the researchers added a fluorescent molecule to an antibody that binds to CD47. The modified antibodies were then introduced into intact bladders, which had been surgically removed from patients with invasive bladder cancer. Because they bladders were kept in good condition, the study’s imaging methods mirrored the way an urologist might use with a real patient.

After 30 minutes, they rinsed the bladder, so only the antibodies that bound to the CD47 protein remained. When they shine the tumor was exposed to with fluorescent light, the cancer cells “lit up” whereas normal or inflamed cells did not.

“Our goal through better imaging is to deliver a higher- quality cancer surgery and better cancer outcomes,” Liao told me. “I am very excited about the potential to translate our findings to the clinics in the near future.”

Previously: Healing hands: My experience being treated for bladder cancer, Drug may prevent bladder cancer progression, say Stanford researchers, Cellular culprit identified for invasive bladder cancer, according to Stanford study and Mathematical technique used to identify bladder cancer marker
Photo of Liao by Norbert von der Groeben

Biomed Bites, Cancer, Dermatology, Genetics, Research, Videos

Spotting broken DNA – in the DNA fix-it shop

Spotting broken DNA - in the DNA fix-it shop

It’s Thursday. And here’s this week’s Biomed Bites, a weekly feature that highlights some of Stanford’s most innovative research and introduces Scope readers to innovators in a variety of disciplines.

Neon green streaks across the screen. The phrases “End mismatched ligation” and “Repair of DNA double-strand breaks” flash at me. Did I stumble across an online, genetic fix-it shop? Sort of -  in that Stanford biochemist Gilbert Chu, MD, PhD, studies broken DNA and has a website to match.

Chu describes his research in the video above: “We started out in the lab trying to understand and recognize DNA that’s been damaged by ultraviolet radiation, which causes skin cancer. This led to the discovery of a protein that turned out to be missing in patients with a very rare disease called xeroderma pigmentosum.”

XP afflicts about 1 in 1,000,000 people in the United States. Without the protein Chu mentioned, mutations and damage accumulates in sufferers DNA, causes cancers and extreme sensitivity to the sun.

Chu’s team has also developed methods that allow other researchers to examine the expression of genes across an entire genome and to determine which cancer patients might be harmed by treatment with ionizing radiation.

“The reason I got interested in this research is that as a member of the Department of Medicine, I am an oncologist and I’m very interested in trying to help cancer patients,” Chu said.

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

Previously: Skin cancer linked to UV-caused mutation in new oncogene, say Stanford researchers, Radiation therapy may attact circulating cancer cells, according to new Stanford study and How ultraviolet radiation changes the protective functions of human skin

Cancer, In the News, Nutrition, Patient Care, Surgery

“Prehab” routines before cancer surgery help patients bounce back faster

Surgery_flickr_thinkpanamaIf you’ve ever had surgery, especially an orthopedic one, you’ve probably had rehabilitation therapy. In recent years, orthopedic surgery plans have begun to include a period of “prehabilitation” exercise to help prepare patients for their procedure. Now, researchers have demonstrated that a pre-surgery work-out routine combined with some dietary changes may be able to help cancer patients regain their baseline strength levels sooner. A story on NPR’s Shots blog described the recent study:

Researchers from McGill University in Montreal studied 77 patients scheduled for colorectal cancer surgery. A kinesiologist gave the patients aerobic exercises and strength training to do at home. A registered dietitian gave them nutritional counseling and prescribed a whey supplement to make up any protein deficits, and a psychologist provided anxiety-reducing relaxation exercises.

Half of the patients were told to start the program before surgery – an average of about 25 days before – and to continue afterward for eight weeks. The other group was told to start right after surgery.

Not surprisingly, the group assigned to prehabilitation did better on a presurgery test that measured how far they could walk in 6 minutes. And it paid off.

Two months after surgery, the prehabilitation group walked an average of 23.7 meters farther than when they started the study. Rehab-only patients walked an average of 21.8 meters less than when they started. (A change of 20 meters is considered clinically significant.) And a greater proportion of the prehabilitation group was back to baseline exercise capacity by then.

Because of the methology the researchers used, it’s not clear how the diet or the exercise prescribed in the pre-surgery regimen affected the outcome. Previous studies that looked at exercise-only regimens did not show post-surgery improvements. A larger study with a more varied pool of patients is likely needed for definitive answers.

Previously: Wellness after cancer: Stanford opens clinic to address survivors’ needs and A call for rehab services for cancer survivors
Photo by thinkpanama

Cancer, Patient Care, Stanford News, Videos

How a new Stanford program is helping transform cancer care

How a new Stanford program is helping transform cancer care

Earlier this week my colleague wrote about a new program where experienced nurses help newly diagnosed cancer patients navigate their medical care. The video above talks more about the program (“We want to take the fear away from our patients and their family,” explains oncologist Oliver Dorigo, MD, PhD) and how it fits into Stanford’s efforts to transform cancer care.

Previously: Pioneering cancer nurses guide patients through maze of care, Ironman of Stanford Women’s Cancer Center and Director of the Stanford Cancer Institute discusses advances in cancer care and research

Cancer, Events, Genetics, Imaging, Stanford News, Surgery, Women's Health

Don’t hide from breast cancer – facing it early is key

Don't hide from breast cancer - facing it early is key

cat_hiding-pgMy cat suffers from acute anxiety. Although she and I have lived together for more than 12 years, and the worst thing I’ve ever done to her was cut her nails, she’s terrified of me. (She’s also very smart – she runs from the sound of my car, but not my husband’s). During trips to vet, Bibs hides her eyes in the crook of my elbow.

It’s a strategy that’s only minimally effective. After all, what I can’t see, or don’t recognize, can still hurt me.

Take breast cancer. It terrifies most women. And if you don’t look for it, you won’t find it. But if you do look, and find it early, you might save your life and your breast, says Amanda Wheeler, MD, a Stanford breast surgeon. She joined other Stanford breast cancer experts at a recent public program sponsored by the Stanford Women’s Cancer Center called “The Latest Advancements in Screening and Treatment for Breast Cancer.”

“One of our biggest challenge is women are scared of breast cancer, but[we have to get] the word out that we have such great advances, we’ve just got to catch it early,” Wheeler said.

She pointed to a tiny dot on a screen. At that size, Wheeler said, breast cancer is almost 100 percent curable. She performs a small lumpectomy. If it’s a little bigger, she can still probably save the nipple.

And if the entire breast must be removed, surgeons like Rahim Nazerali, MD, come in. Nazarali explained the importance of choosing a reconstruction surgeon carefully: The doctor should be accredited by the American Society of Plastic Surgeons and have experience with microsurgery, preferably on the breast. There are different ways to remold a breast and doctors can use either a synthetic implant or a patient’s own tissue, from their abdomen, hips or thighs, Nazerali explained.

All of Wheeler and Nazerali’s artistry depends on expert imaging performed by specialists like Jafi Lipson, MD, whose message at the event was simple and encouraging.

Thanks to many new developments, mammography isn’t the only way to detect nascent breast cancers, Lipson said. Her team can employ 3-D mammography, or tomosynthesis, to reveal a layered look at a breast. And genetic screening, particularly for those with a history of breast cancer in the family, can provide the earliest warning signal of all, the breast cancer team said.

Women no longer need to hide their eyes from the risk, the experts emphasized. Women should take a peek – there’s help coping with what they may find.

Previously: Screening could slash number of breast cancer cases, The squeeze: Compression during mammography important for accurate breast cancer detection, Despite genetic advances, detection still key in breast cancer, NIH Director highlights Stanford research on breast cancer surgery choices, Breast cancer awareness: Beneath the pink packaging and Using 3-D technology to screen for breast cancer
Photo by Notigatos

Cancer, Events, In the News, Patient Care, Stanford News

A neurosurgeon’s journey from doctor to cancer patient

A neurosurgeon's journey from doctor to cancer patient

image.img.320.highEarlier this week, I had the chance to hear Stanford neurosurgeon Paul Kalanithi, MD, discuss living with advanced-stage lung cancer in a conversation with palliative care specialist Timothy Quill, MD. The idea for the night’s event, which was held on the Stanford medical school campus, was to provide a good example of how the doctor-patient relationship can help improve quality of life for the very sick. On stage before a packed audience, Kalanithi, prodded by Quill’s gentle but pointed questions, told the story of how serious illness changed his life. As I wrote in an online story posted yesterday:

“Are there things in particular that you worry about now?,” asked Quill… a professor of psychiatry and medical humanities at the University of Rochester School of Medicine and an expert in end-of-life decision making. “Not really,” [Kalanithi] said. “I am sad at not seeing my daughter grow up, at probably not being here long enough for her to have a memory of me. I try to worry about things that are actually changeable. I worry about getting my book finished. I’d like to have that done for my daughter to know me.”

What surprised Kalanithi most about his life after being diagnosed with lung cancer was just how hard it was dealing with those “existential” questions, he told Quill:

“Having to deal with questions like, ‘What am I going to do with my life?’ was exceedingly difficult. After realizing I wasn’t going to die in weeks or months, figuring out what I was going to do with that time was a struggle.”

Kalanithi has reorganized his priorities since his diagnosis in May 2013, setting new priorities for a much shorter lifespan than he once expected – planning for years instead of decades. He and his wife got their finances in order, they had their first child July 4. Kalanithi said he has found solace in his love of poetry, and through his writing. Kick-starting a writing career that he had planned to start in 20 years was one of those changes.

In January, he wrote an op-ed piece for the New York Times about his cross over from physician to patient titled: “How long have I got left?” He told the audience how surprised he was at the overwhelmingly positive response he received to the story. “My own thoughts on something very personal, really resonated with people. I still get an email every other day in response to the New York Times piece. It’s a great inspiration to me to remember why writing is important.” [Editor's note: Kalanithi's recent Q&A here on Scope has also drawn massive attention; it's already one of our most popular posts of the year.]

Kalanithi’s final message, particularly to those young physicians and medical students in the audience, was to listen to your patients. Take time to get to know them. Remember why it is that you went to medical school. When asked if he treats his own patients differently since his diagnosis, he was characteristically thoughtful. “I think I felt a depth that I didn’t before… But I had excellent role models. I was trained you don’t just go over what are the risks and benefits. You really try to convey as much as you can about what it’s going to feel like.” He told his favorite example of a pediatric oncologist who he observed talking to parents whose daughter had just been diagnosed with a brain tumor. The doctor’s advice: “You need to support each other. You have to prepare your patients as much as you can for that larger emotional experiential landscape. You have to get enough sleep.”

Previously: “Stop skipping dessert:” A Stanford neurosurgeon and cancer patient discusses facing terminal illness and No one wants to talk about dying but we all need to.
Photo by Norbert von der Groeben

Cancer, Genetics, Medicine and Society, Research, Stanford News, Women's Health

Screening could slash number of breast cancer cases

Screening could slash number of breast cancer cases

dna-163466_1280Should every newborn baby girl be genetically screened to prevent breast cancer? Obviously, that isn’t cost-effective — yet. But if it were, would it be worthwhile?

A previous study said no. But research published today in Cancer Epidemiology, Biomarkers & Prevention by Stanford researchers suggests otherwise.

Led by senior author Alice Whittemore, PhD, the team examined 86 gene variants known to increase the chances of breast cancer. They created a model that accounted for the prevalence of each variant and the associated risk of breast cancer. Each possible genome was then ranked by the likelihood of developing breast cancer within a woman’s lifetime.

“It was quite a computational feat,” Whittemore told me.

Working with Weiva Sieh, MD, PhD; Joseph Rothstein, PhD; and Valerie McGuire, PhD, the team found that the riskiest top 25 percent of gene combinations predicted 50 percent of all future breast cancers.. Those women would then have the opportunity to get regular mammograms, watch their diets and make childbearing and breast-feeding decisions with the awareness of their higher risk. Some women might even select, as Angelina Jolie did quite publicly, to have their breasts removed.

“The main takeaway message is we can be more optimistic than previously predicted about the value of genomic sequencing,” Whittemore said. “But we still have a way to go in preventing the disease.”

“Our ability to predict the probability of disease based on genetics is the starting point,” Sieh said. “If a girl knew, from birth, what her inborn risk was, she could then make more informed choices to alter her future risk by altering her lifestyle factors. We also need better screening methods and preventative interventions with fewer side effects.”

“We want to focus on those at the highest risk,” Whittemore said.

Previously: Despite genetic advances, detection still key in breast cancer, NIH Director highlights Stanford research on breast cancer surgery choices  and Breast cancer awareness: Beneath the pink packaging 
Photo by PublicDomainPictures

Cancer, Patient Care, Stanford News

Pioneering cancer nurses guide patients through maze of care

Pioneering cancer nurses guide patients through maze of care

cancer-birminghamLearning you have cancer is a life-changing diagnosis. Even after the initial shock wears off, the gauntlet of medical care necessary to manage the disease can be overwhelming and confusing. At the Stanford Cancer Center, a new program that partners experienced nurses with newly diagnosed cancer patients aims to help the patients navigate the convoluted path their medical care can take.

A recent story in the Stanford Medicine Newsletter profiled Laura Birmingham, RN, (on the left, with cancer patient Sharron Brockman) and Vitale Battaglini, RN, who founded the new program. Birmingham coordinates care for patients with gynecological cancers and Battaglini works with head and neck cancer patients. They are the first people at the Stanford Cancer Center that patients meet and they stay in touch via phone calls, text messages and emails in between patient visits. The staff explained the benefits of a one-on-one program:

“Someone newly diagnosed doesn’t know what to expect, and things that seem basic to us are new to them. Our job is to be their first and main point of contact,” Battaglini said. “It’s a reversal of the traditional nurse’s role: We are the patient’s nurse, not the doctor’s nurse. And what the patient needs depends on that particular patient.”

“Cancer care has become so complex because it involves so many subspecialties,” said Julie Kuznetsov, director of the Cancer Patient Experience, who oversees the new program. “The field continues to evolve with new technologies and specialized expertise. While that means more options and better outcomes, for patients it has become more difficult to put the pieces together to coordinate their care.”

In Birmingham’s words, “Our role is to act as an agent of change in terms of the patient experience.” There are about 18 patients in the program, but that number is expected to grow quickly.

Previously: Stanford researchers examine disparities in use of quality cancer centers and Director of the Stanford Cancer Institute discusses advances in cancer care and research
Photo by Norbert von der Groeben

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