Thursday, October 26, 2017

Good News, Bad News on Breast Cancer Survival Rate

More women are surviving breast cancer, but more than 40,000 will still die from the disease this year. Living with it hasn’t gotten much easier, either.
breast cancer survival

Early detection and better treatments helped prevent 322,000 breast cancer deaths between 1989 and 2015.
A new American Cancer Society (ACS) report shows that the breast cancer death rate decreased by 39 percent during those years.
It’s encouraging news.
But breast cancer remains a significant health problem.
It’s second only to lung cancer as the leading cause of cancer deaths among women in the United States.
ADVERTISEMENT
The disease affects women and men of all ages.
About 81 percent of diagnoses occur in women aged 50 and up. About 89 percent of breast cancer deaths also occur in this age group.
The ACS estimates there’ll be more than 252,000 new cases of invasive breast cancer in women this year.
And more than 40,000 will die of the disease.

Stubborn disparities

Dr. John A. P. Rimmer, a breast cancer surgeon in Florida, told Healthline that a number of factors working together for the past 30 years contributed to the improved survival rate.
Among them are better diagnostic tools and surgical techniques, as well as newer chemotherapy regimens and targeted therapies.
The ACS report notes that not all women have benefited from these improvements.
The overall incidence rate was 2 percent lower in non-Hispanic black women, compared to non-Hispanic white women.
But from 2011 through 2015, the death rate was 42 percent higher in black women. This is a small improvement from 2011, when it was 44 percent higher.
The lowest incidence and death rates are among Asian and Pacific Islander women.
ADVERTISEMENT
The report indicates that biologic, social, and structural factors all contribute to these disparities.
These include stage at diagnosis, other health issues, and access and adherence to treatment.
Also, black women have a higher rate of triple-negative breast cancer, a particularly aggressive form of the disease.
Disparities vary from state to state. Access to healthcare is still a problem.
“Breast cancer is very complex socially and emotionally,” said Rimmer.
ADVERTISEMENT
In his practice, Rimmer has seen women who skipped screening or didn’t initially seek medical care due to lack of health insurance.
Delayed diagnosis and treatment affects chances of survival.
Others refuse all or part of treatment due to cultural differences or misconceptions. And there are some who choose nonconventional treatments that simply don’t work.
Rimmer said that people aren’t always forthcoming about the reasons why they don’t show up for treatment.

What it’s like to live with breast cancer

At the start of 2016, there were more than 3.5 million breast cancer survivors in the United States.
“If we treat you and you’re alive, it’s a good thing. But there’s nothing good about breast cancer,” said Rimmer.
He added that survivors often experience long-term consequences of chemotherapy, surgery, and radiation treatments.
Laura Holmes Haddad, author of “This Is Cancer,” is one of those survivors.
The California mother of two received a diagnosis of stage 4 inflammatory breast cancer in 2012.
She was 37 years old.
To say her life changed would be an understatement.
“When I look back, I think about how naïve I was. The things I thought would be the hardest, like being bald, were actually the easiest for me. But the things I thought I would breeze through, like having both breasts removed and having breast reconstruction, were the hardest,” Haddad told Healthline.
“Physically, I faced pain and discomfort and physical changes I couldn’t have imagined,” she continued.
Haddad lists nerve pain, nausea, sensory issues, and being bedridden among the physical side effects of treatment.
Then there’s the mental and emotional toll.
“I felt angry and bitter at first, and sad. And then I felt guilty and helpless. And I tried to feel hopeful and I tried to laugh when I could, because everything just gets so absurd that you just have to laugh to relieve the darkness. I felt lonely and isolated, and that was tough. And then I felt grief and then I finally hit acceptance. And that felt good,” explained Haddad.
For her family, it was a month after month marathon of logistical and emotional challenges.
Her husband helped as much as he could. But he also had to continue working to keep up with health insurance and mounting cancer-related expenses.
To get through it all, they relied on help from their extended family, friends, and community.

A new normal

“I still have nerve pain in my chest and discomfort, so it is hard to ever completely forget what you have been through,” said Haddad.
She still sees her oncologist every three months. She’ll need to take estrogen blockers for the rest of her life.
“Because I am BRCA2-positive, I have a higher risk of developing melanoma, especially after the extensive radiation treatment I had,” she added.
That means seeing a dermatologist every three months and avoiding the sun as much as possible.
“I also have to keep my weight at a healthy level to lessen the risk of recurrence. Finally, I have to watch for lymphedema in my left arm because I had 14 lymph nodes removed. I also received radiation on my left side, leaving a high risk for developing lymphedema. I see a physical therapist and do daily arm exercises for that,” she continued.
Haddad’s pet peeve is that people often think of breast reconstruction after mastectomy as a “boob job.”
“I can’t tell you how many times people told me that at least I’d have a new pair of boobs at the end of it. I tried to smile and joke about it, but in the end, my bilateral mastectomy was one of the hardest aspects of having breast cancer. I will never, ever forget the day the bandages around my chest were unwound in the surgeon’s office, a few days after the surgery,” she said.
“But after all those challenges, I can tell you one thing. I do not take one second for granted. I really do try and pay attention to every moment, every interaction, every bird I see, every conversation I have. There is no time to waste on nonsense. And I wouldn’t trade that,” Haddad said.

Research is key

“Cancer cells are nasty and sophisticated,” said Rimmer. “The amount of knowledge we have is huge, but the cellular mechanism is hugely complex.”
He emphasized that breast cancer isn’t a single disease. Some types are more aggressive than others.
He believes research is one way to keep the death rate on the decline, especially when it comes to targeted therapies for the most aggressive types of breast cancer. He also said it’s important to identify high-risk women, such as those with BRCA gene mutations.
“At the other end of the spectrum, just simple things like getting a mammogram or going to the doctor when you have a lump are beneficial. Prevention is better than a cure,” Rimmer said.
Clinical trials are crucial to developing new treatments.
Haddad took part in a clinical trial for the drug veliparib. She credits it with shrinking her tumor enough for surgery.
There are challenges to participating in trials, even if your health insurance covers all or part of the treatment.
For Haddad, that meant weekly plane fares, hotel nights, and other travel-related expenses.
“No one really tells you about the logistics of navigating all that while on chemotherapy,” she said.
But she believes that funding research and encouraging people with cancer to participate in clinical trials is important.
Many people don’t realize that breast cancer can still be deadly, according to Haddad.
“I also don’t think they realize — I certainly didn’t — how important medical research is in developing treatment options and hopefully one day a cure for breast cancer,” she said.

Stage 4 Breast Cancer: Stories of Survivorship

metastatic breast cancer

Ann Silberman

“I’m sorry, but your breast cancer has spread to your liver.” These may be the words my oncologist used when he told me that I was now metastatic, but to be honest, I can’t recall them clearly. What I can remember is the emotions: shock, disbelief, and the feeling of doom.
I knew that metastatic cancer was a death sentence. Metastasis, the thing that all women with early stage cancer fear, happened to me only four months after my treatment ended. “How could this be,” I thought. I had been stage 2a. I had no nodes. There was little to indicate that mets (metastasis) was going to be my fate.
I soon realized that “why me” is an unanswerable question. It doesn’t matter. It was me, and now my job was to live as long and normally as possible … or so I thought.
Metastatic cancer strips life away from you bit by bit. First, it takes your health. Then it takes your time, your job, and finally your future. Sometimes, horribly, it even takes your friends or family. Those who can’t deal with a diagnosis of metastatic breast cancer drop away.
Magically, you rebuild in this new world. You find kindness in people you never knew cared. Their friendship unfurls in front of you like a flag. They send cards, bring food, and give hugs. They’ll do chores, take you to treatments, and even laugh at your corny jokes.
ADVERTISEMENT
You learn that you’re more important to some people than you ever imagined, and that these are the only people who count. They bolster you, and your spirits rise and fear dissipates.
The years since I was diagnosed haven’t always been easy, but you’ll note that I said years. Nobody gave up on me, including the most important person: my doctor. No end date was stamped on me, and progress was always expected. Some of the chemos I underwent worked for a time. Some didn’t, but we never quit.
I lost hair but grew spiritually. I felt happy that I was able to have surgery to remove the cancerous half of my liver, and sadness when cancer grew back in what was left. Battle metaphors applied: Like a warrior, I got out my gamma knife and radiated it.
I slept more than I knew a human could, but the times I was awake were simple and joyful. Hearing the laughter of my sons or the buzzing of a hummingbird’s wings — those things kept me grounded and in the moment.
Amazingly, I am now cancer-free. Perjeta, a drug that was not on the market when I was diagnosed, has done what seven chemos, three surgeries, an ablation, and radiation couldn’t. It gave me my future back. I tentatively step ahead, but I won’t forget the lessons cancer taught me.
The present is where you must live when you have metastatic cancer. The future is only a dream, and the past is vapors. Today is all there is — not only for you, but for everybody. This is the secret of life.
Ann Silberman chronicles her cancer experience on her blog, www.butdoctorihatepink.com.

Katherine O’Brien

I was diagnosed with metastatic breast cancer in 2009 at the age of 43. Although 90 percent of the 155,000 people in the United States currently living with metastatic breast cancer were previously treated for early stage breast cancer, that wasn’t the case for me. I was metastatic from my first diagnosis.
Getting my head around this diagnosis was challenging. Here are six things I wish I had known back then. I hope they will help other newly diagnosed metastatic breast cancer patients.
  • Understand that not all metastatic breast cancer is the same. My mom died from metastatic breast cancer in 1983 when I was 17. Mom lived for three years with the disease, and those were three very difficult years. I immediately assumed that my experience would be identical to hers, but Mom had aggressive, widespread disease. I do not. I have a minimal amount of bone mets, which have been largely stable for the past five years. And of course treatments have changed over the past 30 years. I have never had chemo and won’t have it until all of the less toxic options have failed. Some people with a low-volume of bone-only disease can do well for a long time. I’m fortunate to be one of them.
  • Remember that your mileage may vary. You may assume that a metastatic breast cancer diagnosis means massive changes, but that’s not necessarily the case. I see my oncologist every other month, but I do everything I used to do prior to having stage 4 breast cancer. I go to work every day. I travel. I volunteer. I hang out with my family. Not everyone with metastatic breast cancer can say that, but don’t write yourself off!
  • The issue is the tissue. Your pathology report holds the key to understanding treatment options. While other factors (age, prior treatment, etc.) must be considered, your ER/PR and HER2 are your guideposts. If you were previously treated for breast cancer, insist on a new biopsy if feasible. Cancers can and do change!
  • Get the help you need. If you had a headache, you would almost certainly take an aspirin. So if the stress and your emotions are overwhelming, speak up. Ask your doctor for help. There are effective anti-anxiety medications, and most cancer centers have counselors or can refer you to one in your community.
  • Find support — in person or online. Here is a listing of metastatic breast cancer support groups across the United States. There are many online groups (www.breastcancer.org and www.inspire.com are two examples) that have discussion groups for people living with metastatic breast cancer. Two associations (www.mbcn.org and www.lbbc.org) have annual conferences specifically for people living with metastatic breast cancer.
  • Take it one day at time. You can worry about what did happen or what might happen, or you can enjoy the present time for the gift it is. Stay focused!
Katherine O’Brien is a B2B editor and a board member with the Metastatic Breast Cancer Network. She also blogs at I Hate Breast Cancer (Especially the Metastatic Kind).
ADVERTISEMENT

Susan Rahn

The memories I have of the first meeting with my oncologist are hazy, but I clearly remember her saying that she would do all she could to try to keep the cancer at bay. But she also said that there wasn’t a cure for metastatic breast cancer. While sitting there hearing her voice without really comprehending much of what she was saying, the voice in my head was saying, “How did we get here? It was just a backache.”
It’s hard to believe that was a little more than three years ago. According to the statistics — if you go by statistics — I should be dead. A metastatic breast cancer diagnosis has a median life span of 36 months. My 36 months came and went on August 28, 2016 when I was diagnosed with stage 4 metastatic breast cancer de novo in 2013. The cancer had spread outside my right breast, through my bloodstream, and set up shop in my spine and my ribs. I had no idea until my back began to hurt earlier that month. The mammogram I had nine months earlier had been clear. So, to say this diagnosis was shocking is an understatement.
I wish I could say it’s been smooth sailing up to this point. There have been two separate rounds of radiation that caused nerve damage, three separate surgeries, two hospital stays, five different biopsies, and countless tests and scans. I’m on my fourth treatment plan and last non-chemo option.
Knowing that your time is going to be significantly shorter than you had imagined puts things into quite a different perspective. It became very important to me to try to help other people who may find themselves in the same position I did. I had no idea before my own diagnosis what metastatic breast cancer was, or that it was terminal. I went to work to establish a social media presence so I could possibly inform and educate from my experiences. I began blogging, sharing on various platforms, and connecting with other women that had all forms of breast cancer.
I also learned two very eye-opening things: Metastatic breast cancer research is woefully underfunded, and breast cancer is anything but the “pretty pink club” that it’s portrayed to be. I wanted to help change that; to leave a legacy that my now 17-year-old son can be proud of.
ADVERTISEMENT
This past August, two of my closest friends invited me to join them in forming a first-of-its-kind digital magazine/community for all those affected by breast cancer: TheUnderbelly.org. We’re committed to shining a light on the darker, but very important aspects of breast cancer that normally go unspoken or are swept under the rug. When the common narrative of how to ‘do’ breast cancer doesn’t resonate, we want to have a safe place for those who want to show up and be their honest selves without judgement. That’s just what we do!
My initiatives to help raise more money for meaningful metastatic research has led me to become an outreach coordinator for The Cancer Couch Foundation. This newly formed organization is run by volunteers and privately funded. All donations go directly to metastatic breast cancer research and 100 percent of all funds are matched by the institutions that are funded by this amazing foundation, which means the money is doubled. There is no other MBC organization like it, and I am very proud to support all their efforts whenever I can.
If someone had asked me five years ago what I would be doing and what my life would be like, this would have been lightyears away from what my answer would have been. I have my days when I get angry because of what I have to do to make sure I keep going. I’d be lying if I said it was all hearts and glitter. But I do feel blessed that I get to work with my friends on a daily basis and I know — I’m positive — that I will leave a legacy that my son will be proud of and will share with his children should my time come before I get to meet them.
Susan Rahn is a breast cancer advocate and one of the publishers/editors of TheUnderbelly.org. She also blogs at Stickit2Stage4.

Thursday, October 19, 2017


Photo
Cells taken from cancer patients are genetically engineered to fight cancer at a Kite processing facility.CreditKite Pharma
The Food and Drug Administration on Wednesday approved the second in a radically new class of treatments that genetically reboot a patient’s own immune cells to kill cancer.
The new therapy, Yescarta, made by Kite Pharma, was approved for adults with aggressive forms of a blood cancer, non-Hodgkin’s lymphoma, who have undergone two regimens of chemotherapy that failed.
The treatment, considered a form of gene therapy, transforms the patient’s cells into what researchers call a “living drug” that attacks cancer cells. It is part of the rapidly growing field of immunotherapy, which uses drugs or genetic tinkering to turbocharge the immune system to fight disease. In some cases the treatments have led to long remissions.
“The results are pretty remarkable,” said Dr. Frederick L. Locke, a specialist in blood cancers at the Moffitt Cancer Center in Tampa, and a leader of a study of the new treatment. “We’re excited. We think there are many patients who may need this therapy.”
He added, “These patients don’t have other options.”
About 3,500 people a year in the United States may be candidates for Yescarta. It is meant to be given once, infused into a vein, and must be manufactured individually for each patient. The cost will be $373,000.
Continue reading the main story
The treatment was originally developed at the National Cancer Institute, by a team Dr. Steven Rosenberg led. The institute entered an agreement with Kite in 2012, in which the company helped pay for research and received rights to commercialize the results.
Largely on the strength of the new treatment and related research, the drug giant Gilead purchased Kite in August, for $11.9 billion.
“Today marks another milestone in the development of a whole new scientific paradigm for the treatment of serious diseases,” the F.D.A. commissioner, Dr. Scott Gottlieb, said in a statement. “In just several decades, gene therapy has gone from being a promising concept to a practical solution to deadly and largely untreatable forms of cancer.”
Side-effects can be life-threatening, however. They include high fevers, crashing blood pressure, lung congestion and neurological problems.In some cases, patients have required treatment in an intensive care unit. In the study that led to the approval, two patients died from side effects. Doctors have learned to manage them better, but it takes training and experience.
Partly for that reason, Yescarta, like Kymriah, will be introduced gradually, and will be available only at centers where doctors and nurses have been trained in using it.
“Ten to 15 authorized institutions will be ready to go at the time of the launch,” a spokeswoman for Kite, Christine Cassiano, said. “In 12 months, we expect to have 70 to 90. There’s a lot that goes into it, making sure each institution is ready to go.”
Companies have been racing to develop new forms of immunotherapy. The first cell-based cancer treatment — Kymriah, made by Novartis — was approved in August for children and young adults with an aggressive type of acute leukemia. It will cost $475,000, but the company has said it will not charge patients who do not respond within the first month after treatment. Novartis is expected to ask the F.D.A. to approve Kymriah for lymphoma and other blood cancers as well, and may vary its price depending on how well it works for those diseases.
Kite also plans to seek approval for other blood cancers, but does not plan to vary Yescarta’s price, said Ms. Cassiano.
The company also hopes that Yescarta will eventually be approved for earlier stages of lymphoma, rather than being limited to patients with advanced disease who have been debilitated by multiple types of chemotherapy that did not work, said Dr. David D. Chang, Kite’s chief medical officer and executive vice president for research and development.
“This is the beginning of many developments in cell therapy in the next few years,” Dr. Chang said in an interview.
He said the F.D.A. had “embraced” the concept of cell therapy, designating it a breakthrough and accelerating the approval process to speed its availability to cancer patients, many of whom do not have time to wait.
Kite and Novartis also hope to produce cell therapies for so-called solid tumors — like those of the lung, prostate, breast and colon — which account for about 90 percent of all deaths from cancer.
Before it was approved and named Yescarta, Kite’s treatment was known by other names: axi-cel, axicabtagene ciloleucel, or KTE-C19.
The study that led to approval enrolled 111 patients at 22 hospitals; 101 of them received Yescarta. They had one of three diseases: diffuse large B-cell lymphoma, primary mediastinal B-cell lymphoma or transformed follicular lymphoma.
Initially, 54 percent had complete remissions, meaning that their tumors disappeared. Another 28 percent had partial remissions, in which tumors shrank or appeared less active on scans. After six months, 80 percent of the 101 were still alive.
With a median follow-up of 8.7 months, 39 percent of the 101 were still in complete remission — a much higher rate than achieved with earlier treatments — and 5 percent still had partial remissions.
“Many patients were seriously contemplating their own mortality,” said Dr. Caron A. Jacobson, who helped conduct the study at the Dana-Farber Cancer Institute and Brigham and Women’s Cancer Center in Boston. “We would be talking to them about other clinical trials, but also about hospice care and quality of life and comfort. You’re really seeing people get their life back. After a couple weeks in the hospital and a couple weeks at home, they go back to work. On its face, it’s quite remarkable and revolutionary.”
The treatment requires removing millions of a patient’s T-cells — a type of white blood cell that is critical to the immune system — freezing them and shipping them to Kite to be genetically engineered to kill cancer cells. The process reprograms the T-cells to attack B-cells, normal parts of the immune system that turn malignant in certain blood cancers. The revved-up T-cells — now known as “CAR-T cells” — are then frozen again and shipped back to the hospital to be dripped into the patient. The turnaround time is about 17 days.
Kite’s cell-processing facility, in El Segundo, Calif., can provide the treatment for 4,000 to 5,000 patients a year, Ms. Cassiano said, adding that the company has applied for approval in Europe, and if it is granted, will probably build a plant there.
Tina Bureau, a fifth-grade teacher from Queensbury, N.Y., was one of the lymphoma patients in the study. Previously, she’d had several types of chemotherapy.
“The cancer would shrink but then it would come right back,” she said.
Last spring, she had the T-cell treatment at the Dana-Farber Cancer Institute and Brigham and Women’s Hospital in Boston. The side effects were ferocious.
“You don’t even recognize your family members,” Ms. Bureau said. “I had some bleeding on my brain, and had to be put in intensive care. The week it was happening, I don’t remember a lot. It was much more difficult for my family than me.”
Within a month, she had a complete remission, which has continued. She is back at work, full time.
“Yes, it can pose life threatening problems,” Ms. Bureau said. “But when you’re in a situation where your life’s threatened anyway, I don’t feel you have anything to lose.”