Beth Fand Incollingo

Breast cancer can be scary and life-altering at any stage, but those with metastatic disease, which has spread to areas beyond the breast and nearby lymph nodes, live a unique experience. Their perspective and decisions are shaped by the knowledge that their illness is incurable and that they’ll need treatment for the rest of their lives.

Patients facing this diagnosis often say that only others in the same situation can truly understand what they’re going through. 

® talked with five people living with the disease, all ambassadors for Facing MBC Together, an Athenex Oncology program that includes a website and app designed to provide practical and emotional support. Here, we share an excerpt from Pam Haldeman’s journey with metastatic breast cancer.

Self-advocacy has helped Haldeman thrive through five lines of treatment for metastatic breast cancer.

“I felt like I needed to really dig in because when you have metastatic disease, you’ve kind of lost control of your life,” says the 66-year-old wife and mother who lives in a Philadelphia suburb. She received a diagnosis of stage 2/3 triple-negative breast cancer in 2016 and learned in 2018 that it had metastasized to her liver.

“The future is not yours,” she says. “A way to get back a little bit of control is to be your own advocate and get aggressive in researching and going to every conference or retreat available.”

“I’ve worked for the owner of multi-franchise car dealerships for 38 years. Maintaining my normal work schedule allows me to continue to feel both comfortable and productive. My bosses are flexible and understanding when I have to miss work for cancer care, and the cancer center is conveniently located nearby. So, at this time, I am still able to keep my job, my family commitments and most outside activities (except exercise class) without too much disruption or stress.”

On keeping mum about metastatic breast cancer

“If I explained it to people, they always wanted an update. And somebody always saw an ad on TV and wanted to know why I wasn’t taking that drug. It hit a point of ridiculousness, so I just decided to go cold with them and make it very easy, because it’s draining and time-consuming to keep explaining. 

When I’m with my friends, I just want them to have fun, and if I ever want to talk about it, I want to be the one to control it. Instead, the MBC support group I attend twice-monthly has given me the venue to discuss and share more of the physical, mental and emotional issues of MBC among women facing the same challenges.”

“I’ve always been an upbeat person, and through this, I’ve tried to continue to be positive and hopeful yet realistic, as well. People who talk to me or see me carrying on with my regular life have told me I’m an inspiration and that they look to me for my courage and strength. In a way, it’s kind of a legacy that I can leave. You can leave a couple of kinds of legacies: an advocacy legacy and a role model legacy. I hope to do both.”

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“The future is not yours,” says Pam Haldeman, who has metastatic breast cancer. “A way to get back a little bit of control is to be your own advocate and get aggressive in researching and going to every conference or retreat available.”

People Who Have Cancer Can Leave Behind a Couple Kinds of Legacies

® talked with five people living with the disease, all ambassadors for Facing MBC Together, an Athenex Oncology program that includes a website and app designed to provide practical and emotional support. Here, we share an excerpt from Kathleen Friel’s journey with metastatic breast cancer.

Friel is no stranger to having a misunderstood health condition. Being teased in school as a child with cerebral palsy prepared her well for having metastatic breast cancer, she says. “People don’t understand, and the same is true of metastatic breast cancer,” says the 46-year-old scientist and lab director at the Burke Neurological Institute of Weill Cornell Medicine, who learned in May 2018 that she had the disease and it had reached her spine.

“Most kinds of breast cancer are potentially curable, but metastatic breast cancer is not,” the Hartsdale, New York, resident says. “People assume, ‘Oh, you must be fine because you look fine.’ It puts a lot of expectations on us that, if somehow we’re strong enough, then we’ll beat this disease. But with cancer, you can try everything and it might not work.”

On working full time with metastatic breast cancer

“I really love my job and the people I work with, so in some ways it was almost like emotional therapy to stay involved. We’re creating new therapies for children with cerebral palsy, so I feel like it’s not just a job — it’s really a passion. The people in my lab have been so good to me. One time I had radiation and my doctor told me I shouldn’t drive, so I asked a co-worker for a ride. All four of them went, waited for me and took me out to eat afterward.”

“I have a strong support system with other metastatic breast cancer patients who understand what I’m going through. Thank God for social media and support groups. Now that I know those people, I don’t feel isolated, even if some others I know aren’t supportive. Facing MBC Together is also cool because I got to meet all the other ambassadors, and we’re really close friends now.”

On being there for those with the disease

“If somebody in your life gets a diagnosis of metastatic breast cancer, really listen to them and don’t try to sugarcoat things. People think it’s helpful, but it isn’t. At least for me, the most helpful thing is to talk about what’s really going on. Even if you say, ‘I don’t know what to say, but I’ll listen,’ that’s enough.”

“Most kinds of breast cancer are potentially curable, but metastatic breast cancer is not,” says Kathleen Friel, lab director at the Burke Neurological Institute of Weill Cornell Medicine. “People assume, ‘Oh, you must be fine because you look fine.’ It puts a lot of expectations on us that, if somehow we’re strong enough, then we’ll beat this disease.”

‘Don’t Sugarcoat Things’ When Someone You Know is Diagnosed with Metastatic Breast Cancer

people who can offer understanding and support provide the best balm for the spirit.

Five young women found that out when they were affected by breast cancer as patients, previvors or caregivers, and it spurred them to create an organization aimed at supporting others facing those situations. The Breasties (thebreasties.org) works to empower those affected by breast and reproductive cancers through connection with others, particularly those who are younger. Its distinctive name combines “breast” and “bestie.”

Launched as a nonprofit organization in 2018, the New York City-based group now has more than 46 chapters across the U.S., Canada and the U.K.

® sat down with two of the group’s founders, Allie Brudner Brumel and Brianna “Bri” Majsiak, to learn more about the nonprofit organization and the support it offers.

Brumel, a speech pathologist and professor at New York University, is a survivor of breast cancer who carries the BRCA1 gene mutation, which causes an inherited predisposition to breast, ovarian and other cancers. Majsiak, a senior health producer at EverydayHealth, is not BRCA positive but has a strong family history of breast cancer and recently underwent a sensation-preserving preventive bilateral mastectomy.

The group’s other founders are Paige More and Leslie Almiron, who is the associate finance director at the Ovarian Cancer Research Alliance. More underwent a preventive bilateral mastectomy after discovering she carried the BRCA1 gene mutation. At age 23, Almiron received a diagnosis of breast cancer that later became metastatic. Jessica Bonilla, Brumel’s caregiver and best friend, is the group’s chief of wellness.

Why did you feel The Breasties was needed?

I received a diagnosis of triple-negative breast cancer in January 2017, and during treatment, I felt like I was the only young person going through this. I was 28 at the time, and I struggled to find anybody in my age group with a similar situation until I turned to social media, and that was where I connected with Paige, who connected me with Bri.

It was the first time where I felt like “Wow, there are other people who get it.” It sounds selfish, but we created The Breasties because it was something we so desperately needed. We were looking for a place where we felt like we belonged and felt supported.

We decided to put together small get-togethers, like workout classes and potluck dinners, and then a retreat where we went skiing in the Pocono Mountains, just to do something fun and take our minds off everything we’d been through. We applied for our nonprofit status in February 2018.

I met Paige at a support group meeting of a nonprofit for women at high risk of breast cancer. Paige was a few weeks out from her preventive mastectomy. We realized that there were only a few of us on the younger side and making preventive decisions, and the environment didn’t seem very welcoming to young women. We realized there had to be more for us. Paige started sharing her story on social media and bringing together women in the New York area, and that’s how we all came together.

You state on your website that the group supports survivors, previvors, warriors, thrivers, carevivors and supporters. Can you please discuss this mission?

We all have different stories. I’m a survivor, Bri and Paige are on the preventive side, and Jess is a caregiver. All of us have been affected by cancer in different ways, but there’s this connection between us. All of us want the same thing: We want to find a place where we feel supported and seen and motivated and empowered, because it’s hard going through any sort of cancer diagnosis or having a loved one affected or losing a loved one or finding out you’re at high risk.

On retreat, it’s been so magical to see the connections happen from provider to survivor and thriver to caregiver. We’re all about inclusivity, so we say that anyone who feels aligned with our mission and feels like a Breastie is a Breastie. We don’t want anyone to feel alone.

Please describe the kinds of events The Breasties holds.

The retreats, which are free and funded by our annual October gala, are typically two nights and three days, over a weekend. About 350 women have attended so far. They’re a mix of bonding and shared storytime so that people can get to know each other, as well as a variety of events, like skiing, snowboarding, whitewater rafting and hiking.

We always like to incorporate something fun, because it’s so hard after going through chemo or surgery — you feel like you can’t get back to your old self, that your body is only capable of harming you. We like to show everyone that your body is capable of so much more than just getting sick. Your bodies are strong; your bodies are resilient.

Our first year, we had five retreats, and we still had hundreds of women reaching out; we could accommodate only about a fourth of them. We thought, “What can we do to bring as many people together as we can?” We realized that would be a camp, kind of like a retreat on steroids. So, we put together a camp last summer and had 500 people come together for the weekend. That was a paid, at-cost event.

This year, due to COVID-19, camp was a virtual event, and we still had over 450 people enroll. We had live events happening throughout the weekend online. It wasn’t the same, but it still was a really nice way to bring the community together during these very strange times.

How can someone become an ambassador and lead a group of Breasties in their own community?

Our retreat in March was actually our first ambassador training retreat. We had over 60 women come to that weekend to learn how to host a meetup and raise funds at the local level. We have an ambassador handbook that we share with anybody who’s interested. Things look a little bit different now with everything being virtual, but typically, the requirement is that they do one meetup a month. We would share the event and try to help them find people in their community to attend. Then, after about four of those events, they would take a swing at being an official ambassador.

Together, you and the other co-founders have created Q: a large community. What has this community meant to each of you?

We created this organization because we needed it. When we started, it was not even a year out from my diagnosis. When you’re going through active treatment, it’s like fight mode, and there’s not a lot of time or mental capacity to process it. I never fully processed that I had cancer and it was scary, and that was taking a huge hit on my mental health. With the Breasties, I was meeting amazing people, and the retreats, although we were leading them, became a source of healing for me. They let me process everything I had gone through, grieve for my past self and body, and just connect with incredible, strong, beautiful people that I wouldn’t have been able to meet otherwise.

It’s amazing to do something every day that you really are passionate about. After a cancer diagnosis, going back to my job just didn’t feel the same. I felt like I had a bigger purpose and drive in me, and so it’s nice to be able to fuel that energy and give it to something that’s bigger than me.

It’s been life-changing. It’s been a process of us healing as we’re creating community and space for others, and it’s been the most beautiful blessing. I healed so much of my grief, like losing my mom (to cancer), through this community. I never thought I’d meet someone who’d say, “Hey, I know that experience.” Some of my closest connections have been with mothers who are survivors and have a constant fear of not being there for their children, and that’s a connection I never would have expected to make.

Having very recently gone through surgery and navigated preventive decisions, I would not have known what exists if it wasn’t for this community. I’m constantly learning and engaging with people. It’s been so surreal to go through the experience and feel the support that we’re building.

What kind of feedback have you received from people who have come to The Breasties for support?

So many people have mentioned how life-changing it was, because they got invaluable resources or met their new person, their best friend, through this organization. I remember walking through the campus at Camp Breasties last year and seeing a girl sitting on the bench by herself, on the phone. I was eavesdropping because I wanted to make sure she was OK, and I heard her say, “Mom, you don’t understand — there are 500 (people like me) here,” which I thought was just so special.

Right now, we’re doing a lot of virtual support. We want everyone to know that even though the world is shut down, support is still out there. We like to say that the community’s not canceled. We have dozens of virtual events each month around all different topics, and there is something for everyone.

A group extends a hand to those affected by breast or reproductive cancers, especially younger previvors, patients and caregivers. 

Breast Friends: How One Organization is Connecting Those Affected By Reproductive or Breast Cancers

Radiation therapy for early-stage breast cancer once stretched out over many weeks; the current international standard involves higher doses spaced out over three weeks. Now a team of researchers says that giving even higher doses of radiation across only five sessions in select cases, completing the therapy in one week, is equally effective.

In addition, the scientists found the safety profile of the weeklong treatment to be as good as
that of the standard three-week course, which is administered in 15 sessions.

The findings, based on five-year results of the randomized phase 3 FAST- Forward trial conducted in the United Kingdom, were published in The Lancet.

After surgery, many patients with early breast cancer undergo whole- or partial-breast radiation therapy to help prevent recurrence. The radiation is directed at the whole breast or, after mastectomy, the chest wall. In many countries, hypofractionated, or accelerated, radiation treatment has replaced longer courses of therapy for most patients, according to the study’s authors. Sometimes a supplemental, or boost, a dose of radiation to the conserved breast follows this treatment.

Patients may prefer a shorter radiation schedule because it involves fewer trips to the clinic and is more convenient. In addition, an abbreviated course may be beneficial during the COVID-19 pandemic because it limits opportunities for exposure to the virus. “The one-week schedule has major benefits over the three-week or five-week regimens in terms of convenience and cost for patients and for health services globally,” the researchers wrote.

Conducted at 97 centers, the study included adults who had recently undergone lumpectomy or mastectomy for early-stage invasive carcinoma of the breast. Tumor size had to be 5 centimeters or less, and the cancer could have spread to no more than three lymph nodes. Patients who were receiving hormonal therapy for breast cancer at the time they received radiation were permitted to participate. Enrolled between Nov. 24, 2011, and June 19, 2014, the 4,096 participants were divided into three roughly equal groups to receive one of three regimens:

• 40 gray (Gy) given in 15 treatments, or fractions, of 2.67 Gy over three weeks.

• 27 Gy in five treatments of 5.4 Gy over one week.
• 26 Gy in five treatments of 5.2 Gy over one week.


Participants who had undergone lumpectomy were eligible to receive a boost dose to their conserved breast following radiation therapy.

The study’s main goal was to measure the rate of local tumor recurrence in the originally affected breast five years after radiation therapy, with the rate of relapse in the weeklong treatment groups not significantly exceeding the 2% recur- rence rate expected over five years of follow-up after the standard 40-Gy, 15-treatment dose. At a median follow-up of nearly six years, relapse had occurred in 31 patients in the 40-Gy group, 27 in the 27-Gy group and 21 in the 26-Gy group, giving five-year recurrence rates of 2.1%, 1.7% and 1.4%, respectively. Statistically, the results were considered similar. Relapse was more likely to arise in patients who had higher-grade primary tumors, the authors found.

At five years after treatment, changes at the radiation site (scarring or hardening) were observed in 98 of 986 patients (9.9%) who received 40 Gy of radiation, 155 of 1,005 (15.4%) who got 27 Gy, and 121 of 1,020 (11·9%) treated with 26 Gy. The most common side effect was breast shrinkage, which happened in 5.5%, 8.2% and 6.8% of people treated with 40, 27 and 26 Gy, respectively. Breast distortion was also more likely in those who received 27 Gy compared with 26 Gy.

“Patient and photographic assessments showed higher risk of normal tissue effects for 27 Gy versus 40 Gy but not for 26 Gy versus 40 Gy,” the authors wrote. In addition, although they hypothesized that the heart should not be more sensitive than other soft tissues to radiation intensity, the researchers noted that longer follow-up is needed to draw conclusions about the effect of the radiation schedules on cardiac outcomes; they plan to conduct patient follow-up until at least 10 years after treatment. There were no deaths due to radiotherapy, and there was no difference in the rate of secondary cancers between the groups.

“(Giving) 26 Gy in five fractions over one week is non-inferior to the standard of 40 Gy in 15 fractions over three weeks for local tumor control and is as safe in terms of normal tissue effects up to five years for patients prescribed (postsurgical) local radiotherapy after primary surgery for early-stage breast cancer,” the researchers concluded. “The consistency of FAST-Forward results with earlier hypofractionation trials supports the adoption of 26 Gy in five daily fractions as a new standard for women with operable breast cancer requiring (postsurgical) radiotherapy to partial or whole breast.”

Just one week of radiation therapy after surgery for early-stage breast cancer is as safe and effective as longer courses, researchers report. 

Author | Beth Fand Incollingo

People Who Have Cancer Can Leave Behind a Couple Kinds of Legacies

‘Don’t Sugarcoat Things’ When Someone You Know is Diagnosed with Metastatic Breast Cancer

Breast Friends: How One Organization is Connecting Those Affected By Reproductive or Breast Cancers

A Week of Radiation Therapy Following Early-Stage Breast Cancer Surgery Appears as Safe and Effective as Longer Courses