When the cancer returns, what should your next steps be? Find community, expert advice, and wisdom from fellow metastatic breast cancer patients and caregivers who have been there. 

Here is what patients who have been living with MBC—for three, six, even 23 years—want other patients and their loved ones to know.

After a metastatic breast cancer diagnosis, you’ll want to make the most of your time. And while paperwork is probably the last thing you want to deal with, keeping your life organized can help.

woman writing on pink post it next to filing materials

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After a metastatic breast cancer diagnosis, keeping your life organized can help. Here are tips for handling your medical paperwork.

Stay Organized with Metastatic Breast Cancer

Tips for Staying Organized with Metastatic Breast Cancer

10 Tips For Organizing Your Medical Paperwork When You Have Metastatic Breast Cancer

Young woman with breast cancer looking hopeful

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Metastatic Breast Cancer: The Advice I Needed Most

Michael Hunter, M.D.

Medical Reviewer

Patient to Patient: Statistics Do Not Dictate Your Journey

The First Few Months are the Most Stressful

Look for a Breast Specialist, Not Just a Cancer Doc

Seek an NCI Cancer Center If You Can 

Delegate, Delegate, Delegate

Get to Know Other Patients

Keep a Journal

Your Quality of Life Matters

Friends and Family: Listen More, Talk Less

If You Don't Know What to Say, Just Say That!

Offer to Set Up a Meal Train

Be Careful Not to Blame or Shame

Please Support Our Families, Too

Remember That We Have Lives Outside of Cancer

More Help and Advice

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What should your next steps be now that your cancer has spread? Learn how to get your needs met by your family, friends, and community; how to communicate with your care team; and what the future holds. 

Taking Charge with Metastatic Breast Cancer

Taking Charge With Metastatic Breast Cancer

Six years ago, at age 31, Patti was diagnosed with an aggressive form of breast cancer. Three years after that, the cancer came back. At just 34, she faced a metastatic disease that has a [five-year survival rate](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5833304/) of about 34%.  

But Patti knows statistics don’t tell her story. And she doesn’t live in fear. So when her sister Kristin offered to be a surrogate for Patti and her husband, she knew what she wanted to do. She would become a mother.   

Eight weeks ago, she did.  

“I’ve had people tell me that I shouldn’t do this with everything I have going on,” Patti says, who’s now 37. “I understand their concerns. I might have thought the same thing 10 years ago. But this is my life. I always thought I’d have kids. I had this opportunity, and I took it.”



Mother's Day MBC Video

Stories like this–of a woman with metastatic breast cancer having a child through surrogacy–are exceedingly rare, says Pallav Mehta, M.D., an oncologist specializing in breast cancer at [M.D. Anderson Cancer Care Center at Cooper](https://www.cooperhealth.org/locations/md-anderson-cancer-center-cooper-two-cooper-plaza) in New Jersey, who has treated Patti for more than six years. In his 15 years of practicing and of the thousands of patients he has seen, Patti is the only patient with [metastatic breast cancer](https://ww5.komen.org/BreastCancer/MetastaticBreastCancerIntroduction.html) who has found a way to become a mother.  

While it’s possible for some women with earlier forms of breast cancer to get pregnant after treatment, it’s not an option for those whose cancer has spread.  “Metastatic cancer isn’t curable,” Dr. Mehta says. “That doesn’t mean a woman can’t live a long time, but you also can’t take her off treatment for a year, which is about what it would take to have a baby. If you did that, she could die.” 

### Planning for a Future 

As an oncology nurse, Kristin knew exactly what her sister would face when she was first diagnosed at 31. Chemotherapy will put most women into a state of chemically induced menopause, meaning they will stop having a monthly period while they are undergoing treatment. What’s more, some chemo drugs may permanently impact ovarian function or hormone levels, increasing the odds of [infertility](https://www.cancer.org/treatment/treatments-and-side-effects/physical-side-effects/fertility-and-sexual-side-effects/fertility-and-women-with-cancer/how-cancer-treatments-affect-fertility.html) later, according to the [American Cancer Society.](https://www.cancer.org/treatment/treatments-and-side-effects/physical-side-effects/fertility-and-sexual-side-effects/fertility-and-women-with-cancer/how-cancer-treatments-affect-fertility.html)  

Just days after she had a double mastectomy and before she began chemotherapy, Kristin took Patti to an appointment with a fertility doctor to begin the process of freezing and preserving her eggs. It was a “just in case” insurance policy–a way to keep Patti’s options open, Kristin explains.  

"Keep living your life, and always have something to live for."

It would have been easy for Patti, who was still single at the time, to miss the window to harvest her eggs. “I don’t know if I would have gone through that whole process on my own, I was so drugged up and beat up after the surgery,” Patti said. Plus, the procedure is expensive; most insurance companies don’t cover the process or the on-going fees associated with cryopreservation. But thanks to Kristin and their mom, Patti didn’t have to worry about any of the planning. The sisters are close—they’re part of a set of quadruplets (they have another sister and brother), and they have a younger brother too. Patti’s family would be there for her no matter what.  

### Three Years of Stability, Then a Recurrence 

A few weeks later, Patti had 16 eggs frozen and began seven months of chemotherapy and radiation. She continued to take drugs that were intended to prevent her cancer from returning, and she had regular scans to make sure new tumors hadn’t developed.    

By the time she was 34, Patti had resumed her job as a high-school English teacher—and she had just started dating someone new, a quiet, kind man who was slowly winning her over. Life was good. 

Then she discovered a lump in her neck. A biopsy and a scan revealed that the cancer had spread to the lymph nodes in her neck and the peritoneum, or the lining of the abdominal cavity. Patti decided not to share the news the right away. The whole family was soon headed to Walt Disney World, and she didn’t see the point of letting cancer ruin the vacation.  

When Patti finally sat Kristin down to tell her, she simply pulled back her hair to reveal the biopsy scar on her neck, knowing her oncology-nurse sister would know what it meant. No one ever used the word [metastatic](https://www.cancer.gov/types/metastatic-cancer), Kristin says.

Soon after, Kristin went with Patti to an appointment with Dr. Mehta. Kristin listened intently as he explained the next steps for Patti. As they were getting ready to leave, Kristin overheard Dr. Mehta tell Patti, “Keep living your life, and always have something to live for.”

JessicaTodd HARPER-2935

Kristin and TJ

Those words stuck with Kristin. It was the kind of thing Dr. Mehta always said and one of the reason’s Patti liked coming to see him. But for Kristin, those words were a spark that would soon light the future. 

“It was something I would think about all the time,” says Kristin. “If you’re alive and you don’t do the things that you want to do, then it’s like cancer has already taken your life,” Kristin said. “Why shouldn’t Patti get to be happy, just because she got a crappy diagnosis?”  

Meanwhile, Patti wasn’t dwelling on the negative either. A newly approved targeted drug seemed to be keeping her cancer stable, and she was moving forward with finding happiness and living her life. She became engaged to the man she had just started dating not long before her second diagnosis. Patti knew they loved each other–so why wait? The couple got married about five months later. 

But there was still one thing missing. 

### Growing a Family 

After Patti had been married about a year, the two sisters got to talking about surrogacy. Neither of them can remember exactly how the conversation started, but they both remember that Kristin was the one who offered to be Patti’s surrogate. Her reasoning? If one of her siblings needed a kidney, Kristin would give it. So why not give her sister a baby?

“I thought, if Patti could keep battling cancer all this time, I can be pregnant for nine months,” Kristin says. “I love her so much. She’s been the best aunt to my three girls. I wanted to return the favor and be a great aunt for her. I wanted to see her become a mom. And I guess, there was a part of me that thought, this way I’ll always have a piece of her.”

<p><img src = "https://images.ctfassets.net/yixw23k2v6vo/3vHo2HdUYkRICNLIT4fpGt/d1a6889fc6eddfcffc6eb5d4a3b8b613/JessicaTodd_HARPER-2575-credit-2.jpg" width="400" height="600" align="left">Over the years of dealing with breast cancer, Patti had lost several good friends to the disease. And as heartbreaking as that was, she was also upset to see people living with fear and becoming absorbed in the possibility that they would die soon. To Patti, that was no way to live. She realized she had kept those eggs frozen all this time for a reason. This was her chance to be a mom.

It wouldn’t be an easy journey for either sister. Becoming a [surrogate](https://www.hrc.org/resources/overview-of-the-surrogacy-process) requires extensive legal, medical, and even psychological preparation. Once they were finally ready to begin the [IVF process](https://americanpregnancy.org/infertility/in-vitro-fertilization/), they discovered that only half of Patti’s 16 eggs survived once they were thawed. The remaining eight eggs were fertilized with her husband’s sperm, and five became viable embryos.</p>
  
Kristin underwent IVF with two of those embryos. There was excitement and elation when they discovered Kristin was pregnant—and then despair when Kristin miscarried in the first trimester.  

There were three embryos left. They decided to try again, but this would be their only chance. One embryo didn’t survive the thawing process. Another never took once it was transferred. But the third one stuck. Kristin willed the tiny developing fetus to hang tight. And it did.

“I liked to joke that it was her last egg in my basket,” Kristin said. “I was so scared throughout the pregnancy. I knew this was their last shot.”

### Feeling Pregnant  

Throughout her pregnancy, Kristin was careful to always remind herself that the baby she carried wasn’t her own. She played music that she knew Patti liked, including one of Patti’s favorites, Josh Groban’s Granted.  

Meanwhile, Patti was going through significant complications. The cancer had caused lesions in her abdomen, which resulted in painful partial [bowel obstructions](https://www.healthcentral.com/article/myths-about-small-bowel-obstruction). Patti was admitted to the hospital half a dozen times, feeling terribly ill and unable to eat solid food.  

“I was so bloated, I felt like I was pregnant,” Patti says. “Kristin would be like, ‘Feel my belly.’ And I was like, ‘No, feel my belly!’ I could feel bubbles moving through my intestines. I thought, it’s almost like a baby kicking.” 

During this time, Patti had to have a catheter inserted in her chest because a blood clot in her arm made it impossible to insert an IV there. But the port also made it difficult for her to shower or wash her hair. Kristin, who lives nearby, would come over to Patti’s house several times a week and help her.  

These visits were also a chance for Patti to have some face-to-face time with Kristin’s growing belly. As  Kristin blow-dried her hair, Patti would sometime place a hand on her sister, feeling the baby within. 

 “I remember the first time I was over helping her wash her hair,” Kristin says. She put her hand on my belly and started crying, and then I was crying. We just understood.”  

### A Life to Hold on To 

These days, Patti is like most new mothers, constantly tending to everything that comes with caring for a tiny person. She’s up in the middle of the night to feed him and she spends her days washing bottles and running loads of baby clothes through the laundry.  

Photo series

Unlike other new moms, she’s also juggling all the appointments and treatments she needs for her own care. But thankfully her family–including Auntie Kristin–and many friends have stepped up to help her and husband manage it all.  

Patti’s breast-cancer support group even threw her a big baby shower several weeks ago, surprising her with a pile of gifts and so much love. It’s all made her appreciate how many people want to help her celebrate, how many people want to share in her joy. And these days, she has a lot of joy to give. 

She feels her heart ache with it when she watches her son. When she sees his eyes light up or hears him coo. She sometimes thinks about his future, and what he’ll be like when he grows up. But mostly she focuses on each moment with him. 

She knows that no matter what happens, her son will be surrounded by people who love him.  And she knows a part of herself will always be with him.  

“I see myself in him, especially in his eyes, the way he looks at me,” Patti says, her voice heavy with tears. “When I look at him, I know there’s a little piece of me in there. It’s a miracle that he’s here.” 

__See more helpful articles:__

[Metastatic Breast Cancer: Learning to Let Go of What You Can't Control](https://www.healthcentral.com/article/learning-to-let-go-with-metastatic-breast-cancer)

[Living With Metastatic Breast Cancer](https://www.healthcentral.com/launch/living-with-metastatic-breast-cancer)

[How to Tell Your Family You Have Metastatic Breast Cancer](https://www.healthcentral.com/article/how-to-tell-family-about-metastatic-breast-cancer)

JessicaTodd HARPER-2980 crop

Patti and her son

After her first breast-cancer diagnosis, Patti froze her eggs. Six years later, her sister carried the baby she was always meant to have. 

Patti was faced with a seemingly impossible decision: live in fear or live for right now. She chose today. What would you do?

Becoming a Mother When You Have an Incurable Disease

Woman with Metastatic Breast Cancer Becomes New Mom

As a woman living with metastatic breast cancer, Patti faced a seemingly impossible decision: live in fear or live for right now. She chose today. What would you do?

If you have metastatic breast cancer, you may need to travel far from home for regular chemotherapy or radiation treatments. Even getting to a doctor's appointment in your own neighborhood can be a challenge. Several organizations are ready to help cancer patients with transportation.

person listening to headphones on the bus

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Need to find an affordable way to get to your frequent medical appointments? A mix of national and local resources can help.

Free Rides For Metastatic Breast Cancer Care

Finding Free Rides For Metastatic Breast Cancer Care

American Cancer Society’s Road to Recovery Program

CancerCare’s Get You There Program

The Ellie Fund

Angel Wheels

Patient Travel

Chemo Cars

Regional Organizations

Ask Your Medical Center

Network With Your Contacts

Metastatic Breast Cancer: Finding Free Transportation to Your Doctor Appointments

When you have metastatic breast cancer, it's a time to live what life you have to the fullest and continue making memories with loved ones. It can also be a time to get your life in order and create a legacy for those you’ll eventually leave behind, especially when there are young children.

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Having metastatic cancer is a time to live to the fullest, continue making memories, and create a legacy for the loved ones you’ll leave behind.

Metastatic Breast Cancer: Leaving a Legacy

Metastatic Breast Cancer: Leaving Loved Ones a Legacy

Make a Legacy Gift

Leave a Unique Memento

Empower Yourself With Your Story

Communicate Your Values

Record Your Oral History

Write Letters for Life's Milestones

Create a Memory Holder

Let Them See You Share

Make Memorable Moments

Take a Journey Together

Maintain a Loving Influence Through Time

Metastatic Breast Cancer: Leaving Behind a Legacy

Cancer changes everything: our bodies, our perspective on the future, and even our relationship dynamics. But that doesn’t mean we have to give up intimacy and sex.

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Cancer changes bodies, and relationships. That doesn’t mean you have to give up intimacy and sex.

Intimacy After Metastatic Breast Cancer

Rediscovering Intimacy After Metastatic Breast Cancer

Navigate the Connections

Recognize and Redefine Intimacy

Talk More Deeply, More Often

Be Compassionate With Yourself

Acknowledge Changed Relationship Roles

Rediscover Date Night

Revisit Your Favorite Romantic Activities

Moisturize “Down There” Daily

Consider Your Partner's Perspective

Adjust Around Your Cancer

Talk to Your Doctor

When you’re managing metastatic breast cancer, getting better can come with an array of unwelcome challenges: nausea, hair loss, lowered libido, anxiety for the future, and, unfortunately, pain. 

About 90 percent of patients with advanced cancer name pain their most distressing symptom, according to the Cleveland Clinic. Managing pain can be a complex undertaking that involves not just medication but also lifestyle modifications and complementary approaches, says [Susan LeGrand, M.D.](https://my.clevelandclinic.org/staff/2889-susan-legrand), in the medical oncology department of Cleveland Clinic.

“With this type of cancer, unfortunately, there is often [chronic pain](https://www.healthcentral.com/category/chronic-pain),” she told HealthCentral by phone. “That pain can come in many forms. For example, you may have pain wherever the cancer has spread, especially if it’s in the bones, which is common. There’s also nerve pain, also common. Those would need to be handled in different ways.”

When trying to navigate pain management, it’s likely that you’ll find relief through a highly individualized combination of strategies. Here are some aspects to keep in mind:

## Opiates Will Likely Be Involved

As has been extensively covered in the news, the U.S. is facing an opioid crisis, with [addiction (and overdose) rates at record levels](https://www.healthcentral.com/slideshow/chronic-pain-confessions-about-opioid-use). That may cause some cancer patients to shy away from the medication, says Dr. LeGrand. 

But opiates remain the mainstay of cancer-related pain management, she adds, simply because they work so well.

“For some conditions, opiates are not recommended," Dr. LeGrand says. "But cancer is a different story. We haven’t found any alternate medications that can work on the multiple kinds of pain that cancer brings.”

That doesn’t mean that it's opiates or nothing, though. Dr. LeGrand, emphasizes that she and many other physicians try to include other medications in the therapy so that opiates work better at a lower dose. 

And for [nerve pain](https://www.healthcentral.com/article/peripheral-neuropathy-new-findings-that-may-help-you), opiates may be skipped altogether in favor of medications like Lyrica or Gabapentin, which are more appropriate for neuropathy, she says. But in general, don’t be surprised if your doctor includes opiates in your pain mix.

## Complementary Approaches Can Help

In addition to adjusting medications to achieve the ideal mix — Dr. LeGrand says the goal is to be “awake, alert, and comfortable” — [other pain-relieving strategies can also be helpful](https://www.healthcentral.com/slideshow/how-to-deal-with-stress-metastatic-breast-cancer). 

She notes that many people find therapies like chiropractic care, acupuncture, reiki, and physical therapy to be useful. Yoga, mindfulness, a gratitude practice, and other de-stressing techniques can help quell emotional pain, she adds, and lower anxiety levels that can ramp up with metastatic breast cancer, as well.

Focusing on movement as a way to improve bone health is a great choice for those who may be experiencing metastases to the bones, but the benefits of physical activity go beyond soothing physical pain. Increasing your movement, even by taking a few walks every day, can enhance mood and improve digestion, Dr. LeGrand says.

For many, [medical marijuana may be another option](https://www.healthcentral.com/article/cannabis-and-pain-management), notes Karen Munkacy, M.D., an anesthesiologist and researcher who turned to cannabis during her own breast cancer treatment. 

“For conditions like chronic pain, medical marijuana can be very helpful, and it works very quickly,” she told HealthCentral by phone. “You know within hours if it brings relief for you or not.”

## Working Together on a Plan

In its guide on cancer pain management, the Cancer Pain Research Consortium notes that about 90 percent of cancer-related pain can be managed, and yet only half of those with this type of pain seek relief. In part, the researchers suggest, this may be a perception issue. 

Those with cancer — especially one that spreads, like metastatic breast cancer — might believe they have to accept pain as a permanent part of their “new normal.” But this definitely doesn’t have to be the case, Dr. LeGrand says. 

Working with your oncologist and other professionals. like a [palliative care specialist](https://www.healthcentral.com/article/palliative-care-treating-the-person-not-just-the-cancer), can provide an array of options when it comes to addressing multiple types of pain. And the time to start those conversations? Dr. LeGrand believes pain-relief strategies should be discussed as early in the process as possible.

“Start talking about pain management with your care team as soon as you can, so you know your options, and also know plans B, C, D, and so on,” she says. “Sometimes, just knowing that there are more choices to try can be a comfort in itself.”

__See more helpful articles:__

[Palliative Care: Treating the Person, Not Just the Cancer](https://www.healthcentral.com/article/palliative-care-treating-the-person-not-just-the-cancer)

[Where Will It Go? Metastatic Breast Cancer](https://www.healthcentral.com/article/where-will-it-go-metastatic-breast-cancer-part-3)

[Cannabis and Chronic Pain](https://www.healthcentral.com/article/cannabis-and-pain-management)

woman with bald head looking relaxed-iStock-1077480094

From opiates and other medications to yoga, mindfulness, and other de-stressing techniques, an almost endless variety of options are available for cancer-related pain management.

Here’s how you can find pain relief with a highly individualized combination of strategies.

Metastatic Breast Cancer: Better Pain Management

Metastatic Breast Cancer: Pain Management Strategies

As a metastatic breast cancer (MBC) patient, you’ve no doubt endured a roller coaster of intense emotions. For most people, facing mortality sparks anger, fear, grief, and sadness. But regardless of your diagnosis, clinical depression and/or anxiety is more than a reaction; it’s a disorder that should be treated professionally.

“It is normal to feel sad or scared” as an MBC patient, Dr. Kelly Irwin — a psychiatrist and director of the Collaborative Care and Community Engagement Program at the Massachusetts General Cancer Center — told HealthCentral in a phone interview. “Depression is not normal. That is something we can treat.”

What *is* normal is a cycle of coping and adjustment and stress when you’re diagnosed. But those intense feelings should improve within a month or so. If they don’t, that’s a sign to seek help. 

## Time to Reach Out

Other signs that you’re facing something more than being an MBC patient? If you’re having trouble sleeping after a month, or if your relationships, work, or quality of life are being impacted, then it’s time to reach out. You can also ask yourself: When I do have the energy to do things I usually enjoy, can I enjoy them? Is my energy OK? Do I wake up and get tired throughout the day, or do I wake up without any energy? 

In fact, Dr. Irwin told Health Central, “Any time you’re wondering, *should I see someone or talk to someone?*” err on the side of doing so.

Psychiatric oncologists tend to see lots of MBC patients, especially younger women who are coping with many competing demands, including jobs and children, Irwin said. In fact, over 25 percent of advanced cancer patients are also diagnosed with depression, [according to Breastcancer.org](https://www.breastcancer.org/symptoms/types/recur_metast/stop_treat/palliative/depression). Therapy and/or medication can help patients improve sleep and focus on things they want to. 

If your hospital or cancer center doesn’t have psychiatric oncologists on staff, there are other professionals who can help. Your first outreach can be to a nurse, social worker, your oncologist, or another member of your cancer care team. They may be able to help you themselves, or link you to a therapist or someone else who can. 

## Sorting Out Causes of Depression

Treatments also depend on the cause of the depression or anxiety, which a professional can help sort out. For example, any medications you’re on may need to be adjusted since certain combinations can contribute to depression, [Dr. Jesse Fann at the University of Washington](https://www.uwmedicine.org/bios/jesse-fann) told [Living Beyond Breast Cancer](https://www.lbbc.org/news-opinion/when-distress-persists-depression-and-metastatic-breast-cancer). Someone with expertise in both oncology and depression can also help distinguish between symptoms that are caused by cancer treatments, like chemotherapy and hormone therapy, and similar symptoms (sleep trouble, loss of appetite) caused by depression. 

And when depression is treated, Dr. Irwin said, patients are more likely to complete breast cancer treatment. 

Finally, remember that patients without a clinical diagnosis of depression can benefit from various types of emotional or mind/body support as they navigate the challenges of MBC. Some patients may find help through a priest or minister. Others may be able to access therapy through their job. Others may find relief in mind/body practices such as yoga or meditation.  

__See more helpful articles:__

[Cleaning Up Your Act: How to Deal with Anxiety, Safely and Productively](https://www.healthcentral.com/article/cleaning-up-your-act-how-to-deal-with-anxiety-safely-and-productively)

[Diagnosed with Cancer? 7 Tips for Calming Anxiety](https://www.healthcentral.com/slideshow/tips-for-calming-anxiety-with-cancer-diagnosis)

[Breast Cancer: Relieving Stress, One Step at a Time](https://www.healthcentral.com/article/breast-cancer-relieving-stress-one-step-at-a-time) 

Pensive female cancer patient experiencing symptoms of depression.

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A cycle of coping, adjustment, and stress is normal for anyone diagnosed with cancer. But those intense feelings should improve within a month or so. If they don’t, that’s a sign to seek help.

It is normal for a cancer patient to feel sad. But depression is not normal — and it's treatable.

Metastatic Breast Cancer and Depression

Metastatic Breast Cancer: Treatment for Depression or Anxiety

[Clinical trials](https://www.healthcentral.com/article/clinical-trials-faq) have become common for numerous conditions, as a way to evaluate new treatments and medications that might improve on what’s currently available. [Metastatic breast cancer](https://www.healthcentral.com/article/what-is-metastatic-breast-cancer) is no different, according to Nicole Williams, M.D., of the Ohio State University Comprehensive Cancer Center. She notes that this type of cancer has a number of clinical trials in progress, geared toward improving quality of life, minimizing or eliminating symptoms of ongoing treatment, and lengthening life.

If you have metastatic breast cancer, how do you know if a clinical trial might be right for you? And what can you expect if you do join one? Here are some factors worth considering:

## Cancer Trials Don’t Use a Placebo Group

One very common concern among those considering [clinical trials](https://www.healthcentral.com/article/how-to-join-a-clinical-trial) is that they’ll get placed in a group given only a placebo, which means they won’t receive “real” treatment, says Dr. Williams. But this is never the case for cancer, or for any condition where treatment is essential. 

Often, she says, you’ll receive some type of standard care, and what’s involved in the trial will be a complement to your regular treatment. Even if the clinical trial has a novel therapy, or you’re using a single drug, you’ll still be closely monitored to ensure this is the best treatment for you. 

“You’ll never be in a situation where you’re either receiving treatment OR you’re in a clinical trial,” says Dr. Williams. “They’re one and the same.”

## You May Want to Join a Trial Early in Your Treatment

Another misconception is that clinical trials are only offered to patients toward the end of their disease, when treatment options are limited. Dr. Williams believes that considering a trial earlier can broaden your possibilities.

“Clinical trials are an excellent option for anyone with metastatic breast cancer, because it gives you more choices in terms of potential therapies,” she says. “Some of our patients with this type of cancer join a trial right after being diagnosed.”

## Trials Have Specific Goals

Clinical trials for metastatic breast cancer aren’t focused on a cure, Dr. Williams notes. Instead, they are mostly geared toward helping patients live longer or improving their symptoms. For example, a trial might be attempting to lower chronic pain related to metastases.

Other trials might be related to targeting [gene mutations](https://www.healthcentral.com/slideshow/facts-about-brca-gene-mutations) associated with the cancer, she adds, especially when it comes to delivering treatment based on those genetic markers. 

“When looking at trials, understand what the larger purpose is,” Dr. Williams suggests. “This can help you determine if that matches with your own interests and goals.”

## Not Everyone Is a Good Fit for a Trial

There are disqualifying factors for many clinical trials, like confounding medical issues such as liver failure and kidney failure. 

Also, there are trials where you will be randomized in terms of what type of therapy is planned, and not everyone is happy with the group they’re assigned, says Janie Grumley, M.D., breast surgical oncologist and director of the Margie Petersen Breast Center at Providence Saint John’s Center and associate professor of surgery at the John Wayne Cancer Institute in Santa Monica, California.

Fortunately, you’re never locked into a trial, and you can leave it whenever you want. For example, Dr. Grumley notes, some people who don’t like their randomized group simply stop participating in the trial. That happens so often that researchers anticipate that reaction when developing their trial protocols. 

## You’ll Probably Join When a Trial Is in a Later Phase

By the time a clinical trial is evaluating the effects of a drug or therapy on humans, it’s gone through several phases already, says Jack Jacoub, M.D., medical oncologist and medical director of the California-based MemorialCare Cancer Institute at Orange Coast Medical Center. 

Earlier phases look at patient safety and efficacy, while later phases are geared toward replicating results, he notes. That means if you join a “phase 4” trial—which is the last step before FDA approval is sought—there will be plenty of data about results, including potential side effects and benefits. 

Dr. Jacoub suggests talking with your doctor and the trial researchers about these aspects, so you know what to expect with that particular treatment, based on what trial participants have reported previously.

“In general, having an in-depth conversation about every aspect of a trial can help you gain a clearer understanding of the anticipated result,” he says.

__See more helpful articles:__

[Six Steps to Finding a Clinical Trial](https://www.healthcentral.com/article/six-steps-to-finding-a-clinical-trial)

[Taking Charge with Metastatic Breast Cancer](https://www.healthcentral.com/launch/btg-metastatic-breast-cancer)

[Living with Metastatic Breast Cancer](https://www.healthcentral.com/launch/living-with-metastatic-breast-cancer)

__See more helpful articles:__

[Six Steps to Finding a Clinical Trial](https://www.healthcentral.com/article/six-steps-to-finding-a-clinical-trial)

[Taking Charge with Metastatic Breast Cancer](https://www.healthcentral.com/launch/btg-metastatic-breast-cancer)

[Living with Metastatic Breast Cancer](https://www.healthcentral.com/launch/living-with-metastatic-breast-cancer)

Researchers looking at results of clinical trial.

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In metastatic breast cancer clinical trials, every participant receives real treatment; there are no placebo groups. These trials don’t focus on a cure; instead, they aim to help patients live longer or improve symptoms. You can join a clinical trial early in your treatment; it may give you more therapy choices.

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If you have metastatic breast cancer, how do you know if a clinical trial might be right for you? And what can you expect if you join one?

Metastatic Breast Cancer Clinical Trials

Metastatic Breast Cancer Clinical Trials: What to Expect

What to Expect in Clinical Trials for Metastatic Breast Cancer

Here's one woman's advice for looking forward to the future while living with metastatic breast cancer, including tips for self-compassion, education, advocacy, and connecting with your family and support network.

Dionna Koval enjoys the view from a pedestrian bridge

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Dionna Koval intro

Get tips for facing the future with metastatic breast cancer, including self-compassion, education, advocacy, and connecting with your support network.

Moving Forward with Metastatic Breast Cancer

Metastatic Breast Cancer: Tips for Facing the Future With 

It’s Normal to Struggle When You’re Diagnosed With MBC

Get Educated About Metastatic Breast Cancer

Find a Breast Cancer Doctor You Trust

Connect With Others Dealing With Metastatic Cancer

Lean on Your Family and Friends

Younger Teens and Kids May Not Understand Your MBC Diagnosis

Become a Patient Advocate for Metastatic Breast Cancer

Know That Progress Toward an MBC Cure May Come Slowly

Face the Future With Positivity

Moving Forward With Metastatic Breast Cancer: One Woman’s Tips

When you have metastatic breast cancer, your body needs treatment, but so do your heart and mind. Here are some ways to regain (and maintain) emotional equilibrium when you're overwhelmed by stress.

Get tips for staying fit with this late-stage breast cancer, including the best types of exercise to try, what we know about the benefits, and precautions you should take to stay in shape.

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Is it beneficial to exercise when living with MBC? The answer is a definite yes. Here are tips for staying fit and active with advanced breast cancer.

Best Exercises With Metastatic Breast Cancer

Exercise With Metastatic Breast Cancer: What You Should Know

Exercise Tips for Women With Metastatic Breast Cancer

woman with cancer wearing headscarf, drinking tea, standing outside

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Your body needs treatment, but so do your heart and mind. Here are some ways to regain (and maintain) emotional equilibrium despite the stress.

Reduce Metastatic Breast Cancer Stress

Metastatic Breast Cancer: How to Deal With Stress

Why It’s Important to Reduce Stress

You Didn’t Cause Your Breast Cancer

Every Day’s a New Beginning

Spend Time With Friends

Exercise

It’s OK to Accept Help

Get Outside

Work When You Can 

Seek Professional Help

Michael Goldman

Editor

What Does the Research Say?

Exercise Offers Other Confirmed Benefits

Get an Exercise Prescription

Get Aerobic

Let's Get Muscular: Resistance Training

Yoga: Balance, Flexibility, Meditation and More

Tai Chi: Empowerment

Let's Get Strong and Destress: Boxing and Karate

When to Push, When to Step Back

Enlist a Buddy or Friends

Exercise is Brilliant Therapy

Chemobrain can make it hard to concentrating or doing more than one thing at a time. Here's everything you need to know about chemobrain, including why it happens, who might get it, and how to deal with it.

BRCA1 and BRCA2 gene mutations put you at risk for breast and ovarian cancers. Here are 10 things you should know about what it means and how to make the right testing and treatment choices.

BRCA gene mutations indicate a higher risk of hereditary breast and ovarian cancers. Here’s what you should know about your screening and treatment options.

10 Important Facts About BRCA Gene Mutations

BRCA Gene Mutations: 10 Important Facts

10 Facts About BRCA Gene Mutations

Pink breast cancer awareness ribbon on doctors lab coat.

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If you feel confused or have trouble focusing as you go through cancer treatment, it could be chemobrain. Learn more about what it is and why it happens.

Do You Have "Chemobrain"?

Chemobrain from Cancer Treatment

Metastatic Breast Cancer Treatment Side Effects

What Is Chemobrain?

Who Gets Chemobrain?

What Causes Chemobrain?

How Long Does Chemobrain Last?

Contributing Factors to Chemobrain

Managing Chemobrain: Talk to Your Doctor

Try to Reduce Your Stress

Focus on One Thing at a Time

Rely on Memory Aids

Set Yourself Up for Success

Know Your Rights

Metastatic Breast Cancer and “Chemobrain”: Cognitive Side Effects of Treatment

When Lisa Vento Nielsen was diagnosed with [metastatic breast cancer](https://www.healthcentral.com/article/what-is-metastatic-breast-cancer) at age 39, she was shocked. As an eighth-grade teacher and mom to two young kids, she struggled to absorb all the information about what was ahead—radiation, chemotherapy, doctor appointments, and numerous tests—but she also dreaded having to tell her principal, fearing that her work life was about to collapse.

“I feel there’s such a stigma around being sick,” Nielsen says. “I actually felt ashamed when I was diagnosed, as if I’d done something wrong. That made it more difficult to talk about.”

Although she worked throughout her treatment, Nielsen’s contract wasn’t renewed for the subsequent year, and it felt devastating.

“Work is part of our identity,” she says. “With cancer, you have to come to terms with [who you are in a different way](https://www.healthcentral.com/launch/living-with-metastatic-breast-cancer). I believe that’s true, no matter what kind of work you do.”

Nielsen is far from alone when it comes to facing [work issues after a diagnosis](https://www.healthcentral.com/article/the-workplace-and-breast-cancer-how-to-balance-the-two). Although every workplace is unique in terms of culture, support, and resources, there are some steps that anyone with newly diagnosed metastatic breast cancer should consider before and after having “the conversation” with HR and supervisors.

### 1. Understand your timelines

To put together as much information for your employer as possible, talk to your medical care team about likely timeframes when it comes to surgery, chemo, or other treatments, according to Liz Nikol, a behavioral health therapist at [Summit Medical Group](https://www.summitmedicalgroup.com/) in New Jersey who had breast cancer herself at age 29. Drawing on her skills as a former HR professional, she now counsels patients about [work transitions](https://www.healthcentral.com/article/seven-strategies-for-avoiding-unemployment-after-a-breast-cancer-diagnosis) as well as mental health challenges.

“The initial timeline of treatment may change as you begin to be treated, but at least it gives you and your employer a starting point,” she says. “That can also be [helpful emotionally](https://www.healthcentral.com/article/emotional-spiritual-support-for-metastatic-breast-cancer); it can give you a sense of stability at a time when everything feels in limbo.”

### 2. Be open to a different path

Another step before talking with your employer could be taking a hard look at whether you want to continue in your current job, Nikol advises.

“For some people, working is a great counterbalance to treatment; it makes them feel good,” she says. “For others, especially if they don’t really like their work, maybe this is a good opportunity to take some time off and consider the career path they really want.”

For example, rather than look for another teaching position, Nielsen decided to found a nonprofit called [Career After Cancer](http://www.careeraftercancer.org/), focused on helping people with cancer get back to meaningful work through online courses and in-person training. Based on her experience, she wants to help others with issues like interviewing, “[chemo brain fog](https://www.healthcentral.com/article/invisible-illness-week-this-is-your-brain-on-chemo),” job loss, resume gaps, and work identity.

### 3. Be realistic about balancing work and treatment

Depending on your treatment plan and work responsibilities, you could end up taking surprisingly little time off, says Nikol. But that doesn’t mean you should count on that being the case.

“Be honest about how this diagnosis and the treatment will [potentially affect you](https://www.healthcentral.com/article/predicting-the-course-of-metastatic-breast-cancer-not-a-simple-path),” she says. “You may need to come back on a limited basis, or to take weeks off after a surgery.”

Also, she adds, understand that treatment may have [short term effects](https://www.healthcentral.com/article/forever-can-change-10-cancer-side-effects-that-wont-last) on your [focus, memory, and analysis skills](https://www.healthcentral.com/article/8-tips-for-dealing-with-chemo-brain). If your work depends heavily on those kind of skills, Nikol suggests re-evaluating your work plan after a few treatments.

### 4. Know your rights and keep documentation

If you work for a company with over 50 employees, it must follow the [Family and Medical Leave Act](https://www.dol.gov/whd/fmla/), which mandates that you have 12 weeks unpaid time off, and that you come back to the same position or one that’s similar in terms of responsibility.

In addition, it’s helpful to look through an employer’s policies regarding medical leave, according to Mark Marsen, a member of the HR Disciplines Expertise Panel at the Society for Human Resource Management, and an HR professional for a non-profit health care organization.

When you approach your company about your diagnosis, he suggests talking with HR first, since that can get the documentation process started. Some companies will use a third-party firm that handles short-term disability approvals, which may require more paperwork.

“It may feel cold and sterile to have to fill out all these forms, but the more documentation you have, the better,” says Marsen. “Ask questions, get clarity about what the policies are, what the expectations might be, and get it all in writing. That helps to protect you and the employer and removes ambiguity.”

### 5. Draw on employer resources

Many companies and organizations, especially larger ones, may have health resources that can be beneficial. For example, there are wellness programs that could tie in with your [cancer nutrition goals](https://www.healthcentral.com/article/ways-to-eat-healthier-with-metastatic-breast-cancer), or employee resource groups that connect you with others who have been diagnosed with cancer.

“It’s possible your workplace may be another source of support for you,” says Nikol. “That’s important, because once you move past the initial diagnosis and first rounds of treatment, the friends and family who were there for you may start to go back to their lives. It can feel like a lonely transition. But if you have workplace resources to fill in that gap, it’s very helpful.”

__See more helpful articles:__

[The Workplace and Breast Cancer: How to Balance the Two](https://www.healthcentral.com/article/the-workplace-and-breast-cancer-how-to-balance-the-two?ic=edit)

[How to Break the News About Your Metastatic Breast Cancer to Friends and Coworkers](https://www.healthcentral.com/article/how-to-tell-friends-coworkers-about-metastatic-breast-cancer)

[Advanced Colon Cancer Patient Kept Working During Treatment](https://www.healthcentral.com/article/working-during-colon-cancer-treatment)

Talking with your employer about your metastatic breast cancer diagnosis requires some preparation. Follow these 5 suggestions for meeting with HR and supervisors to plan proactively, protect your rights, and make the most of your employer's support.

A metastatic breast cancer diagnosis can have a big impact on your job. Follow these 5 suggestions to find the best way forward with your employer.

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