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.
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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.
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.
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.
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.
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.
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.
“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.
“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.