Living With HR+ Metastatic Breast Cancer
Resources, expertise, and survivor support to help you after a diagnosis
To help you along the way in the weeks and months after a metastatic breast cancer diagnosis, SurvivorNet has developed this series called Living With HR+ Metastatic Breast Cancer.
The series focuses specifically on advanced breast cancer that is classified as HR-positive and HER2-negative, and is designed to help you with some of the challenges that lay ahead, such as navigating treatment options, making a treatment plan, and beyond.
Handling a New Diagnosis
I have metastatic breast cancer — now what? Navigating a new diagnosis
At this point, you’ve likely already had the phone call or met with your doctor and were told you have metastatic HR+ (or HR-positive) breast cancer. Metastatic means that the cancer has spread to distant parts of the body. You may have been previously treated for breast cancer or this is a new diagnosis.
A classification of HR+ and HER2- means that the cancer has tested positive for estrogen and progesterone receptors and negative for HER2. This is the most common “subtype” of breast cancer. The classification can help your doctor pick the best treatment options for your individual disease.
While the diagnosis may seen scary (and it’s natural to feel a range of emotions related to it), it’s important to remember that there are many treatment options available.
In this section of Living With HR+ Metastatic Breast Cancer, we’ll go over how to keep track of all the new information you’re getting — and offer some guidance on how to cope with emotions that can feel overwhelming.
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There are a few basic things you can do to help manage the process when you first learn of your cancer diagnosis. Dr. Heather Yeo, a colorectal surgeon at Weill Cornell and an advisor to SurvivorNet, has these tips that are helpful for people facing cancer across the board:
- Have someone come with you to the doctor — It is important to bring a close friend or family member not only to support you, but also to help you understand and digest all the information.
- Take notes — Writing down what you hear can help you focus and create a record of the information so you can refer to it later on.
- Don’t be afraid to get a second opinion — Your doctor won’t be offended if you get a second opinion. It is extremely important to go through the process with a doctor you trust — and make sure you’re getting the best care possible with a doctor you feel comfortable with.
After a diagnosis, be kind to yourself
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“How am I going to get through this?” It is often one of the first questions a person will ask after a cancer diagnosis.
“My advice is to take one day at a time and be kind to yourself,” Dr. Susan Parsons, Director of Survivorship Care at Tufts University, said.
Survivors also tell us it’s key to ask for the support you need — both mentally and physically. There is life after diagnosis, so the goal is to keep hopeful and strong, and cut yourself some slack.
Understanding Your Type of Breast Cancer
HR+ breast cancer: Why does cancer type matter?
It’s critical to remember there are still many treatment options available for patients with later-stage breast cancer. The treatment approach will depend on many factors about your individual disease — and may involve surgery, chemotherapy, radiation, targeted therapies, or a combination of multiple approaches.
As previously mentioned, HR+, HER2- is a specific type of breast cancer that can help doctors choose the best treatment option for you.
The unique features of breast cancer
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Cancer cells may have what are called receptors that help identify the unique features of your tumor.
The three main receptors for breast cancer are the estrogen receptor, the progesterone receptor, and the HER2 receptor.
The estrogen and progesterone receptors go together because they are fueled by hormones. Think of the cancer cell as having little hands on the outside of the cell which grab hold of proteins that help it grow. These proteins are sometimes called “ligands.”
An example of a type of ligand that can stimulate a cancer cell is the hormone estrogen. An estrogen receptor-positive breast cancer will be stimulated by estrogen to grow. In this instance, your doctor may offer you treatment to specifically target the estrogen receptor.
How treatment order is determined
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There are many factors that go into determining which breast cancer treatments a patient will be given, and what order those treatments will be given in.
Dr. Elisa Port, Chief of Breast Surgery at Mount Sinai Health System, explained to SurvivorNet that there are certain subtypes of the disease such as HER2-positive breast cancer or triple-negative breast cancer that sometimes benefit from having treatment first and then surgery.
The majority of other types of breast cancer (like HR+, HER2-) will undergo surgery first, and then doctors use the information they learn during surgery to determine what additional treatment is needed.
However, with metastatic disease, surgery may not be part of the treatment discussion. It all depends on your individual situation.
“It’s very tailored, personalized precision medicine approach, for not only the person, but also the tumor,” Dr. Port said.
How can genetic testing help determine treatment?
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Genetic screening may be ordered for patients when doctors suspect an inherited genetic mutation is present. These tests can be useful in directing therapy and may also be useful for the patient’s relatives to better understand their risk of developing breast cancer.
Genetic sequencing of tumors has also become standard practice, according to many experts.
The test allows doctors to understand some of the changes or mutations that may have evolved in a tumor.
This can help your doctor determine what the best course of treatment is for your individual disease — and they may be able to recommend a targeted therapy. The results you get from testing the tumor may also help your doctor determine if you are a good candidate for a clinical trial.
What to know about molecular testing for breast cancer
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Next Generation Sequencing allows for the tumor to be assessed for several genetic changes at the same time. Many of the drugs used in the treatment of breast cancer are targeted to specific mutations found in the tumor. As we move into the era of precision medicine, molecular profiling has become critical in directing treatment.
Treatment Options
What are the treatment options for HR+ metastatic breast cancer?
While metastatic, or stage four, breast cancer is not considered curable, there are many treatment options available that can drastically improve the quality of life for people living with advanced breast cancer.
There have been incredible advances in treating metastatic breast cancer in the past few years alone. What sort of treatment your doctor recommends will depend on factors like your overall health, genetics, the biology of the tumor, and more.
Treatment for metastatic breast cancer may involve:
- Hormone therapy
- Chemotherapy
- Targeted therapy
- Immunotherapy
- Surgery
- Radiation
In this section of Living With HR+ Metastatic Breast Cancer, we’ve rounded up some of the latest advances in treating the disease — and when they can be used.
Your doctor may also recommend using a combination of these approaches.
CDK4/6 inhibitors for breast cancer explained
CDK4/6 inhibitors are now a preferred first line regimen for the treatment of metastatic hormone receptor positive breast cancer in combination with hormone therapy for post-menopausal women and pre-menopausal women receiving ovarian suppression.
These inhibitors work by disrupting the cell cycle preventing the cells from “committing” to cell division.
The side effects include but are not limited:
- Low white blood cell counts
- Fatigue
- Nausea
- Vomiting
- Diarrhea
- Headache
- Respiratory infections
The risks vs. benefits of CDK4/6 inhibitors
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Promising new data from a recent trial showed that patients with with HR+ and HER2- breast cancers who received a CDK4/6 inhibitor called Ribociclib (sold under brand names Kisqali and Kryxana), plus endocrine therapy, had a 25% lower risk of recurrence or death.
Still, it’s very important that patients talk to their doctors to understand the risks vs. benefits.
What is tamoxifen? How is it used?
Hormone therapy typically forms the backbone of many first-line treatments for hormone receptor-positive breast cancers. There are several drugs available with differing ways of blocking the effects of estrogen or its production. Hormone therapy may be given alone or more commonly in combination with other targeted therapies.
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The type of hormone therapy used depends on a woman’s menopausal status. For pre-menopausal women, the ovaries are the biggest contributor of estrogen in the body and thus ovarian suppression with surgical removal of the ovaries or the use of medications such as leuprolide may be used. For post-menopausal women, the primary source of estrogen is via conversion of adrenal steroids into estrogens in the non ovarian tissues.
Anastrozole and Letrozole are non-steroidal aromatase inhibitors that prevent the conversion of adrenal hormones into estrogens outside of the ovaries. These drugs are indicated in post-menopausal women and may be used alone or in combination with other targeted therapies.
Fulvestrant is an estrogen receptor antagonist, which means it will block the effects of estrogen on the cell membrane. This is also indicated in post-menopausal women and may be used alone or in combination with other targeted drugs.
Tamoxifen is a selective estrogen receptor modulator, which means it works to prevent estrogen from helping cancer cells to grow. It may be used as a second line agent in certain patients. It is also used to prevent breast cancer among women who are high-risk for breast cancer because of family history.
There are side effects for some patients, many of which mimic menopause. These include hot flashes, fatigue, and joint pain but they can be managed.
Trodelvy for HR+, HER2- breast cancer
If the first attempts at therapy do not work, or stop working, there are other options for women with metastatic HR+ cancer.
These include:
- Alpelisib (Piqray) — A PI3K inhibitor (for PIK3CA activating mutation)
- Elacestrant (Orserdu) – An estrogen receptor blocker (for ESR1 mutated receptors)
- Olaparib (Lynparza) – A PARP inhibitor (for BRCA1/2 mutated breast cancers)
- Capivasertib (Truqap) — An AKT inhibitor
- Fam-trastuzumab deruxtecan-nxki (ENHERTU) – An antibody drug conjugate
- Sacituzumab govitecan (Trodelvy) — An antibody drug conjugate
- Pembrolizumab (Keytruda) – PD-L1 immunotherapy, for patients with high tumor mutational burden
Trodelvy was recently approved by the Food and Drug Administration (FDA) for patients with HR+, HER2- metastatic breast cancer that had stopped responding to at least two earlier courses of therapy.
Drug therapies in the setting of metastatic breast cancer are constantly changing as new drugs and drug combinations are introduced. As a result, there are a plethora of treatment options, especially for those who progress or cannot tolerate a specific treatment.
Cancer treatment is becoming more personalized thanks to next generation sequencing. Please speak to your oncologist about which options are right for you.
Preparing for Treatment
Assembling your treatment team
It can be challenging to find a doctor and decide where to get treatment. When you’re stressed, it’s easy to overlook some options.
We’ve consulted several experts in the field to get advice about planning during this early stage of the treatment process and to learn why it’s incredibly important to establish a trusted doctor-patient relationship — no matter what sort of treatment you end up undergoing.
For advanced cancer, should I consider a multidisciplinary center?
Seeking out second opinions (you can — and you should!)
“What would you do if someone in your family got cancer?” We put that question to some of the most renowned cancer doctors in the country.
National Cancer Institute Chief of Surgery Steven Rosenberg recommends seeking out multiple professional opinions to confirm a diagnosis and figure out the options. Highly respected doctors sometimes disagree on the right course of treatment, and advances in genetics and immunotherapy are creating new options.
Why the doctor-patient relationship matters
Although there will always be limitations on how much time a doctor can spend with any given patient, the doctor-patient relationship is extremely important after a cancer diagnosis.
You’ll want to make sure you are working with a doctor you trust, who will respect your opinion and keep you informed about all of the treatment options for your particular diagnosis.
Dr. Nina Shah, a hematologist at UCSF Medical Center, stressed the importance of patients feeling comfortable enough to voice concerns to their doctors.
“It’s on us to make sure that we are emotionally available to the patients, and as available as we can be with our time, although there are always limitations there,” Dr. Shah explained.
Part of the doctor-patient relationship involves the patient feeling seen and heard — and advocating for themselves where they see fit.
Chemotherapy FAQ
Chemotherapy, hair loss, wigs: Answers to common chemo questions
If chemotherapy is part of your treatment plan, you may be worried about a number of potential problems — from how you’ll feel mentally to the physical side effects and if you’ll be able to continue working.
We consulted experts to break down common chemo side effects, how long they last, and plans you can make with your doctor to help mitigate them.
How will chemotherapy make me feel?
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There are a lot of myths about how chemotherapy impacts people’s lives. It’s sometimes assumed that while undergoing chemotherapy you’ll be restricted to your home, and unable to move around but this is certainly not the case in many situations, Dr. Marleen Meyers, an oncologist at NYU Perlmutter Cancer Center, told SurvivorNet.
Many people can continue to work through treatment and Dr. Meyers encourages her patients to exercise, even if it’s just a walk. It can make a huge difference when dealing with fatigue, a common side effect of chemotherapy.
There are also treatments to help with other common side effects of chemotherapy. Many medications are available for treating nausea and vomiting as well as anemia.
Can scalp-cooling devices stop hair loss?
For some people, scalp-cooling devices may be able to help prevent hair loss. For others, hair loss may be inevitable — and that can lead to a lot of anxiety.
While many survivors embrace their temporary looks, others really struggle with the idea of people seeing them without hair. For women especially, hair is often very much a part of identity.
There are plenty of options available, including some created by cancer survivors, to help keep you comfortable during this time — including wigs, head wraps, and hats.
Coping with hair loss & the anxiety it brings
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Many people going through cancer treatment feel a sense of dread associated with the thought of losing their hair.
Such a drastic physical change may lead to anxiety and sleepless nights.
Patients can speak to their caregivers to see if any interventions are possible, and should also look into products that are specifically made for people dealing with temporary hair loss — like wigs, head wraps, and more.
Talking about these anxieties can help, but it’s also OK to say so if you are not comfortable discussing it, Psychiatrist Dr. Samantha Boardman stressed.
Diet, Exercise & Stress Management
Living with cancer: Diet, exercise & stress management
While metastatic breast cancer is considered incurable, many patients go on to live long, stable lives after a diagnosis. But you may be wondering if you’ll have to make any drastic changes to your lifestyle.
That will largely depend on your diagnosis and what type of treatment you are undergoing. Different people manage treatment in very different ways.
This section of our Living With HR+ Metastatic Breast Cancer guide focuses on everyday health basics — like diet, exercise, and stress management — during and after treatment.
Nutrition goals during chemotherapy
When undergoing chemotherapy, the main diet goal is to maintain weight.
Krista Maruschak, a registered dietician at the Cleveland Clinic, says that eating six smaller meals a day and packing some extra calories and proteins into these meals when possible can make a big difference.
Extra calories doesn’t mean you should have a bag of potato chips with every meal. Things like nuts, dairy products, olive oil, avocados, and hummus are all healthy fats that will do the trick.
What about vitamins & supplements?
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Dr. Marleen Meyers, a medical oncologist at NYU Perlmutter Cancer Center, told SurvivorNet that people living with cancer should focus on a healthy diet rather than trying to get their nutrition through supplements.
“A very important issue to remember…is that they are not FDA-controlled, which means that you don’t really know what you’re getting,” she explained.
Stay active — it matters
When you are going through treatment, it’s important that you continue to live and maintain a healthy lifestyle to the extent that you can.
While you may not feel up to your former workout routine for months or even years, staying active in other ways can make a huge difference.
A guided meditation for the SurvivorNet community
Getting stress under control is another part of living a generally healthy lifestyle. Many experts in the cancer field have shared with SurvivorNet that patients tend to do better when they are less stressed.
Yet, this is easier said than done when living with cancer. One approach to managing stress that many survivors embrace is meditation.
When dealing with a journey that can be nerve-wracking and very emotional, it can really help to take some time to quiet the mind. To help you get started, we’ve included the above quick & simple guided meditation.
Survivor Stories
Inspiring breast cancer survivors share what got them through treatment
When it comes to coping with hardships that come with a cancer diagnosis, patients turn to many different outlets.
Here at SurvivorNet, we’ve spoken to dozens and dozens of breast cancer survivors about the unique approaches they took to get themselves through the tough times.
This section of Living With HR+ Metastatic Breast Cancer focuses on a range of different ways to stay positive — from faith and spirituality to finding humor in the struggle.
'Anything that comes, I'm ready': A survivor's story of turning to faith
Painting & dreaming: An artist's approach to coping
The pink tutu: A story of love, marriage & laughing through cancer
More Resources
Living with breast cancer
You’ve made it to the end of Living With HR+ Metastatic Breast Cancer. We hope you were able to find some helpful information and some of the support you are looking for as you continue your cancer journey.
Be sure to check out SurvivorNet’s designated section on later-stage breast cancer to learn even more about the basics of your disease, the specific type you have, and what you can expect during the treatment process — and beyond.
We also provide regular updates on any new treatment options as well as inspiring survivors stories.
At SurvivorNet, we’re here to help survivors like you navigate the complex world of treatment and living with cancer.
Thank you for being a part of the family!