I once believed that

 YOU HAVE CANCER

were the worst words I would ever hear.

I was wrong. As cancer patients we learn to live with uncertainty, from the impact of our medications to the results of our scans. Like so many others, however, after my grueling early-stage treatments were behind me, I was ready to move on. Little did I know that I would eventually join the one in every three patients who are eventually diagnosed with metastatic breast cancer. “Your cancer has spread,” was far more difficult to hear.

If you’re reading this you are either a) recently diagnosed with MBC or Stage IV cancer, b) have a friend or loved one who was diagnosed, or c) you understand that it can happen to anyone and you want to know more. I hope the information will be helpful to each of you, but my primary concern is the patients. There’s almost too much information to grapple with, so I hope to share my personal experiences and insights as a starting point.

EMOTIONAL TURMOIL

Your MBC diagnosis may be an incredible shock, and like most of us, you will probably experience a cascade of feelings from anger to fear to confusion to betrayal, and back around again. All of those emotions are normal, and they are important to experience. As you work your way through the decisions you will need to make your emotional support team is just as important as your medical team. Lean on them! No one who loves you wants you to have to get through this alone, and supporting you is all they can do to help. Different people will be good at different things – some can sit quietly while you cry, others can help you understand your medical choices, some others can distract you and others will run errands or bring over a meal.

CHALLENGING ASSUMPTIONS

It wasn’t so long ago that Stage IV patients went off to die. Today there are many treatment options, and science continues to evolve. While there is much we don’t know, the two last decades have seen significant advances in our understanding of cancer and how we can treat it. For one thing, we’ve learned how incredibly diverse cancer is, which is part of the challenge in treating it. However, emerging targeted therapies look promising, and bring with them fewer side effects than traditional chemotherapies. Getting new drugs to the market is a slow and expensive process, but as trials for new drugs often seek MBC patients, and as trials near their end, compassionate use or “expanded access” programs are becoming more readily available so that patients can get the medications as soon as possible.

QUALITY OF LIFE

When you are diagnosed with early stage cancer the goal is curative – eradicate the cancer from your body through medications, radiation and/or surgery. However, sometimes cells survive treatment and lurk in our bodies, waiting for the opportunity to set up shop at sites outside the breast. When that happens, when we are diagnosed with metastatic breast cancer, there is no cure. While work is being done to change that, treatment for Stage IV is a constant balance of longevity and quality of life. As the patients, you will be actively involved in these kinds of decisions, in partnership with your medical team.

TREATMENTS

While there is no cure for MBC, treatments still improve and possibly extend lives. Some treatments are meant to control the disease, including chemotherapies, endocrine therapies and targeted therapies can occasionally reverse the progression of cancer in your organs, and can even bring you to “NED” or “no evidence of disease.” The difference between NED and “cure” is that the underlying assumption is that the cells are still there and are likely to grow again some day, but that there are no discernible tumors in your body. This is where all Stage IV patients hope to be! And while it doesn’t always happen, these treatments might also be able to keep your cancer in check, holding back progression for as long as possible. Unfortunately over time many cancers become resistant to treatment and another line of therapy must be introduced. Each of these protocols will come with their own set of benefits and challenges, including side effects.

Treatments may also be palliative, which is to say, they are designed to minimize or control symptoms, most notably pain, but also stress and other symptoms. Specialists in this field can work closely with your oncologist and growth in palliative care (which is not the same as hospice care and does not mean you’re giving up!) has greatly enhanced the quality of life of Stage IV patients.

SECOND OPINIONS

Some patients find getting second opinions to be difficult. There is a chance that the new will continue to be bad, and there is a fear that the primary doctor will take offense. However, when your life and well-being are on the line, it’s critical! A second opinion may well confirm the direction your primary doctor suggests, and offer you peace of mind that the plan is a good one. Additionally, second opinion doctors may offer you choices that didn’t occur to your original doctor. I’ve found all of my doctors open to this kind of collaboration, with an understanding that the goal is always what is best for the patient. If your doctor isn’t open-minded, you may want to choose another one.

Some tips on getting second opinions:

First, go to another hospital if possible, but certainly to another practice. Doctors who work together sometimes begin to think alike. The ideal second opinion will take an entirely fresh look at your past treatments and present condition.

Second, see a breast specialist, ideally with a research connection. The pace at which the medical landscape changes is mind-boggling. Many community oncologists simply can’t keep up with the latest advances, especially if they are treating breast, lung, prostate, skin, blood and other cancers. An oncologist who focuses their practice on breast cancer is working in a narrower field, and one at a research institution is even more likely to be familiar with both cutting edge and emerging options. Many people may have to travel to find someone who fits this bill, but a collaborative oncologist at homes means that after an initial consultations these doctors can work together to get you the best care as conveniently as possible. You may want to check out the National Cancer Institute’s Designated Cancer Centers. Don’t be afraid to call them – they see regular patients like you and me!

CLINICAL TRIALS

Many, many patients find the idea of trials scary. Who wants to be a guinea pig, right? I wouldn’t. But dig a little deeper and you may find an incredible opportunity to get a cutting edge treatment. (Click to find information about clinical trials.) It may help to have a basic understanding of how trials work:

• Drugs don’t go into human trials until they have been thoroughly tested and show benefit in animals.

• Trials are overseen by both the FDA and a local Institutional Review Board (IRB). This oversight protect patient safety and to ensure unbiased results/reporting.

• Human trials are typically run in three phases. If the drug “fails” any phase of the trial it could be sent back to the lab or could be shelved entirely.

  • Phase I: The primary goal in Phase I trials is to define toxicities and determine the trial dosage. Often there are only a handful of people in this phase, and if the toxicity level is acceptable, the drug can move on. The benefit of a Phase I trial is that the patient is guaranteed to get the medication, though it could be at a toxic level.

  • Phase 2: In this phase the trial is looking at how effective the drug is, though side effects and safety continue to be monitored. This is usually larger than a Phase I study, and again, the patient is guaranteed to get the trial drug.

  • Phase 3: These are often large, randomized-control studies that enroll both a trial group and a control group. The control group is given the current recommended treatment, while the trial group is given the experimental treatment. Safety, side effect, progression-free survival and overall survival are generally the primary targets for the study.

Placebos – Patients often fear that if they enter a trial they could get a placebo in place of any kind of treatment. This is not the case in cancer trials. Almost invariably cancer trials will look at current treatment vs. an improved treatment OR current treatment with or without an additional drug. In the latter, if the study is evaluating Drug A vs Drug A + B, the control group will get BOTH Drug A and a placebo. Remember, Drug A is the currently approved treatment; you will not get less than the standard of care. In fact, in some cases if you progress on Drug A you will be given the option to go off the study but get the medication being tested if it has proven promising.

SUPPORT

Finding support can be a frustrating challenge. Often metastatic patients find traditional breast cancer support groups a mismatch. Other metastatic patients are more likely to understand where you are coming from and the challenges you face. If you can find a local support group, join in. You can always leave if it’s not to your liking. If you can’t find a local support group you have a few options…

Create your own support group. METAvivor, a national non-profit that focuses on both MBC-specific research and support has a replicable support program that is straightforward and easy to launch.

Look online for opportunities to connect. The #BCSM Monday night tweetchat (9 PM eastern) is known for it’s warmth and openness to metastatic patients, embracing us as #fearlessfriends. Other online communities include the Inspire group specific to advanced breast cancer as well as the AdvancedBC.org site which has chat boards as well as excellent content.

MBC-specific conference serve as another opportunity to connect and get the latest research updates. The Young Survival Coalition hosts an annual Summit for women diagnosed under the age of 40, which offers mets-specific sessions. The Metastatic Breast Cancer Network and Living Beyond Breast Cancer each host a more general MBC conference. Most of these organizations have scholarship available to attend.

SELF-CARE

This can be the hardest part of all some days, but it’s critical to take care of you. Techniques such as yoga, mindfulness meditation, exercise, social activities, to name a few, can make a meaningful difference on both your outlook and well-being.

Lori Marx-Rubiner is a breast cancer advocate and metastatic breast cancer patient. She is currently serving as president of METAvivor, is an avid blogger, live-tweets many breast cancer conferences, serves on scientific peer review and is working on a memoir. She lives in Los Angeles with her husband John and son Zachary.

Disclaimer: #BCSM does not provide medical advice. The information provided is for general information only. No online site should be used as a substitute for personal medical attention.