The Patient Navigator's Perspective
As The Partnership continues to foster relationships with our partners, we would like to highlight the work of the Joe Andruzzi Foundation through their Financial Assistance Program. Grant applicants must submit their application through a healthcare professional, and oftentimes recipients choose to apply with the help of a social worker. One of our new Board Members, Dana D'Alessandro Haseotes, is a Clinical Social Worker who has a long-lasting relationship with JAF by providing assistance with the grant application process. We look forward to continuing our connections with partner organizations in similar ways, to provide the education and resources to those who need it most.
Finding Meaning While Waiting in the Infusion Chair
By: Beth Fand Incollingo
When Linda Dziobek was lost in chemotherapy-induced brain fog and facing neuropathy that made every movement of her hands a struggle, her love of beading helped heal her. Now the jewelry she makes while sitting in the infusion chair does the same for those around her.
After every treatment at Women & Infants Hospital in Providence, Rhode Island, the 15-year survivor of ovarian cancer adds sparkling creations to an “earring tree” placed there by volunteers. Patients are free to choose from and keep the jewelry that hangs there.
Dziobek also gives away jewelry when she’s treated at Dana-Farber Cancer Institute in Boston. She has made rings for patients whose swollen fingers are too large for standard sizes and instructed others in bracelet-making techniques.
“It makes people feel good and doing something productive while I’m here gives me purpose,” Dziobek, a retired nurse, says. “A couple of months ago, a woman told me that my blue earrings were the only ones she could find that matched her dress for her daughter’s wedding. She was in the middle of her treatment and had no hair, but she had a beautiful scarf with the earrings to match her dress. It really helped, and she couldn’t thank me enough. I had tears in my eyes; it was like a connection was made. You don’t realize the impact you have when you do something like this.”
Depression and Cancer
November 11, 2019
Beloved Jeopardy game show host, Alex Trebek, was diagnosed with pancreatic cancer earlier this year. Public personalities are usually very private about their health struggles, so it was surprising to learn of Trebek’s diagnosis. By divulging details about his treatment and the progression of his disease on television, viewers were invited to enter into his experience.
In an interview with Good Morning America’s Robin Roberts, Mr. Trebek talked candidly about his diagnosis and also revealed his struggle with feelings of depression. Speaking to Ms. Roberts, he stated “I’ve had kidney stones, I’ve had ruptured discs, so I’m used to dealing with pain, but what I’m not used to dealing with is the surges that come on suddenly of deep, deep sadness — and it brings tears to my eyes.”
During the interview, Trebek also spoke about his battle with disease-related depression as he discussed chemotherapy treatment and the effects he experienced. As he spoke with Ms. Roberts, he said, “Chemo affects people in different ways and people have to understand that and there’s nothing wrong with saying, hey, I’m really depressed today and I have no idea why. Why am I crying today?”
Depression is one of the most common side effects of cancer and may begin anytime during or after treatment. No one knows exactly why depression is so prevalent in the lives of those with cancer, but it is thought that feelings of deep sadness may stem from rapid changes brought about during or after a cancer diagnosis.
Feelings of sadness are normal and affect everyone to some degree. These feelings can occur at different times and for different reasons, but when feelings of sadness won’t go away, they may indicate the beginning stages of depression. Breastcancer.org states in one article that depression is more than just feeling down in the dumps or sad for a few days. Feelings of depression don't go away and can interfere with your everyday life. The site also ntoes that more than 20 million people in the United States deal with depression each year.
Cancer as a Social Disease
November 12, 2019
Maybe it's because I also lecture on cancer survivorship, and on sexual health after cancer, but I've come to realize that I am rarely treating only the one with cancer—I am also treating that patient's loved ones because I've come to understand that cancer is a social disease. It's part of what makes this profession so special. We not only meet people at their most vulnerable, we meet those important to her. And we get to know everyone. If we are fortunate, these relationships span years, and we get to really understand patients as people—sharing in their joys and celebrations and their sorrows. I've seen women with ovarian cancer attend their children's weddings and meet their first grandchild. I've seen young women with breast cancer marry and have families. I've treated women born around the same time as me, and I've met their kids, who are around the same age as my own. I've watched their kids grow, as I and my patients grow gray. I wish it happened often, but sadly, it doesn't. And to me, it's hard because when a patient dies, not only does that special relationship cease, so do the relationships that I've built with that patient's circle. I've said goodbye to many people after their loved ones have died, and it can almost feel like they've walked into another world—one where I no longer fit.
I wondered if this was something others also experienced, and whether my colleagues also found themselves thinking about the families and friends that came in to our lives because of one person's cancer, and left once that person had died. I decided to talk with Dr. Aditya Bardia about it. Aditya is a friend and colleague I met when I was at Massachusetts General Hospital. He is also an accomplished clinical researcher who serves as the Director of Precision Medicine at the MGH Center for Breast Cancer. His work focuses on integrating precision diagnostics and therapeutics, including the clinical application of circulating tumor cells and DNA as "liquid biopsy," to significantly improve the outcomes of men and women treated for, and living with, breast cancer. Recently, his work on the antibody drug conjugate (ADC), sacituzumab govitecan, was published in the New England Journal of Medicine. More than this, Aditya is also an incredibly kind clinician—thoughtful, deliberate, and empathic. His dual roles in drug development and early trials and as a busy clinician made him the perfect person to ask about this.
"For me, not seeing a patient's family or friends after they've died is tough," he stated. "Over the years, I establish a deep bond with the patient and their families. It's something forged through the times I've helped them cope at their most vulnerable, the times weve laughed and shared significant life events, and those times when we worked through cancer treatments not working. The patient and caregivers essentially become like a part of an extended family."
That made sense to me. I remember in my early days as an attending, I had met a young woman with an aggressive breast cancer. She had come in with her family. I got to know all of them pretty well—even learning that the kids were from a prior marriage. For a while we would see each other during 3-month checkups. They barely felt like medical visits because we would just tell stories about our lives and laugh. Then she developed metastatic disease. She restarted treatment and our visits became more somber. Despite our best efforts, she didn't respond to treatment and died a few months after her diagnosis. I still remember that her husband came back to see me a week after her funeral. He just needed to talk— he felt like a lifeline had been cut. He explained how the cancer center had been his only other family during that period and that he hadn't realized how much those visits meant to him. We talked for a while that day, even discussing starting a group for men whose wives had died of cancer. But life got busy and I didnt hear from him again, but that didnt mean I stopped thinking about him.
I had felt an obligation to take care of him, but I didnt know how to. I asked Aditya about it as well. "I do think we have an obligation as providers—and as extended family members-- to support the patients family after someone we cared for dies. Its such a difficult and challenging time. What that means might range from sending a sympathy support card, to making a phone call, to attending the funeral, or even making a personal visit. I have done all of these in one form or another and feel it not only helps the family members but it helps me as well. I think cancer centers can do more, especially since we know that families are as important as the person with cancer. Whether that is formal programs to support caregivers or after care programs after a loved one dies, these are needs that should be met. At the end of the day, it is about doing what we can to heal the patient, and that includes their families."
I agree as well, and we are starting to see those voices in programs. At Lifespan Cancer Institute we have formed Patient and Family Advisory Councils to help steer patient—centered care. Their input will become essential to identifying and meeting the needs of caregivers and spouses throughout the cancer trajectory. We just need to ensure that access continues for caregivers and families, even after the patient him- or herself has died.
Learning About Pathology
Medically reviewed by Stuart J. Schnitt, MD, and George L. Mutter, MD
July 17, 2019
A pathology report describes the findings in a tissue sample (biopsy or excision), which are always submitted to a pathologist after being removed from a patient. The tissue is sliced very thin and stained on a glass slide for a pathologist to examine under a microscope to determine if there is disease present, and if so, what kind.
“Pathology is the hub around which oncology rotates; it’s the center of patient management,” says Stuart J. Schnitt, MD, a pathologist at Dana-Farber/Brigham and Women’s Cancer Center (DF/BWCC).
Oftentimes, the terminology of these reports can be difficult for patients to understand. In particular, be cautious about complicated abbreviations you do not understand, as their meaning may change with context. Google searches also often produce erroneous or misleading interpretations.
Your doctor will explain the results of your pathology report to you and can answer any questions you have.
What are the different components of a pathology report?
Patient and specimen identifiers
This information includes the patient’s name, birth date, and other personal information. It also details clinical history, the type of biopsy or procedure, and the type of tissue being analyzed.
Procedures often generate multiple specimens that are submitted together to the pathologist in separate containers. In these cases, a letter or number is assigned to identify these different samples submitted. The individual container labels are carefully recorded, including any specific designation (such as “cervical biopsy at 3 o’clock position”) that allows the pathologist to know where it is from.
Survivorship: DAY ONE
The 'Right Track' to Navigate the Cancer Experience
July 9, 2018
Five leading cancer organizations came together to establish four steps that patients of all malignancies can turn to as they navigate their experience.
“You have cancer.” Those words are often followed by an overload of oncology terms: immunotherapy, precision medicine, genomic testing, clinical trials, progression-free survival, overall survival. It’s an ever-growing list.
But what if there was a roadmap to guide patients before they begin to feel overwhelmed? Five leading cancer advocacy organizations — the Multiple Myeloma Research Foundation (MMRF), LUNGevity Foundation, the Metastatic Breast Cancer Alliance, the Pancreatic Cancer Action Network and the Prostate Cancer Foundation — have come to a consensus on four steps that patients of all malignancies can turn to as they navigate their experience.
First, patients need to find the right team. That means locating the best experts and centers with extensive experience in treating their specific cancer. Next, they should ensure they receive the right tests, meaning the right information and a precise diagnosis. The right team and tests can then lead to proper treatment, which will include a plan and potentially identify clinical trials. Finally, patients should share their data throughout their journey. This step can potentially help not only themselves, but others with the same type of cancer.
A recent study published in The Cancer Journal evaluated where gaps in knowledge exist. It was conducted by the Harvard Business School Kraft Precision Medicine Accelerator, a multidisciplinary initiative focused on four integrated workstreams to advance precision medicine. The five cancer organizations are working as part of the Accelerator’s Direct to Patient workstream.
“What we found is there is an incredible opportunity to help patients get on the right track with tips on how they can research physicians and arm them with the right information to be proactive and informed,” Lori Marcus, who chairs the Direct-To-Patient workstream of the Kraft Precision Medicine Accelerator and has held C-level roles with multiple consumer companies including PepsiCo and Keurig Green Mountain Inc., told CURE in an interview.
Chemical biologists create small molecules to boost discoveries or prototype novel therapies
June 10, 2019
Biomedicine always comes down to biochemistry – the exact chemical interplay between the dizzying number of molecules that drive health or disease. In every cancer research center, biochemists study these interactions, develop chemical tools, and collaborate with molecular biologists, genomicists, and other experts in biomedical science.
Within this vast field, chemical biologists focus primarily on designing and synthesizing small molecules for research and treatment. Back in 2006, Dana-Farber launched a bold experiment to accelerate this work: It hired three chemists with ambitious goals and gave them access to resources not usually found in academia.
One hope for the budding Chemical Biology program was that the chemists, in partnership with Dana- Farber physician-scientists, would be able to unlock some of the mysteries that drive cancer.
"A good chemical probe can do a lot for the basic biological understanding of a process, and it's often very complementary to genetic tools," explains Program Director Milka Kostic, PhD. "In genetic research, you usually remove the entire gene. With a chemical compound, you inhibit the activity of the protein, or remove the protein rather than the gene. So that offers you very complementary ways of asking about the function of a protein."
The experiment proved a wild success. By 2015, the first three investigators had published more than 300 papers, filed more than 250 patents, formed eight startup firms, and, most importantly, made major contributions to the creation of six drugs in clinical trials. Two of the drugs, ceritinib and osimertinib, were approved by the Food and Drug Administration (FDA) in 2014 and 2015 for treating non-small cell lung cancer.
Today, the Institute's Chemical Biology program hosts nine principal investigators and more than 100 researchers. Its headquarters, in state-of-the-art facilities at Dana-Farber's Longwood campus, brings together Institute chemists, structural biologists, translational research experts, and other experts under one roof.