This patient education video offers an introduction to metastatic breast cancer, which is breast cancer that has spread to another location in the body or comes back in a distant location. This video is led by 3 women diagnosed with this disease, Kim Dowling, Helen Karys, and Paige Sinclair, and by Dr. Lidia Schapira.
ASCO Answers Fact Sheet: Metastatic Breast Cancer (PDF; 2 pages)
Guide to Breast Cancer
Article: Coping with Metastatic Cancer
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Cancer.Net®: Doctor-Approved Patient Information from ASCO®
Metastatic Breast Cancer: An Introduction
Paige Sincliar: I was having bone pain that started in my ankles and went up to my knees, went to my hips, went to my lower back. And by the end of the day, I would have 102 fever.
After eight months of different tests, I insisted on a CT scan, and was heading back to the hospital, got rammed by a car, and ended up in the emergency room after being hit by a car that was going 50 miles an hour. And it sounds like a bad movie, I know. And they gave me the diagnosis while I was in the emergency room waiting to hear if I had any broken bones.
Kim Dowling: So, I was diagnosed in 2010. In June of 2009 I had my son and I nursed him until January of 2010. I noticed that there was a lump and it was painful. So initially my gynecologist thought it was a clogged milk duct and did an ultrasound and it was fine. So we just waited and watched, but it continued to get bigger
So I ended up having a mammogram and got diagnosed with breast cancer in December of 2010. Initially the scans looked good in the rest of the body and we thought it was a -- starting treatment for a lower stage. So we started chemo and then we were going to do surgery and radiation after that, but I continued to have some back pain in the middle of my back.
So we got an MRI and in February of 2011 saw that the cancer had spread to spine. So then at that point I was diagnosed with metastatic breast cancer.
Helen Karys: I was first diagnosed when I was 60 so that was 17 years ago. And I had a lumpectomy and radiation and Tamoxifen. And then three years ago I was diagnosed again and it had gone into the bones.
Coming to Terms with a Diagnosis
Lidia Schapira, MD, FASCO: Metastatic breast cancer means the breast cancer has spread to other parts of the body. There may be cells or small tumors that form in lymph nodes, liver, bone, brain, lungs, organs that are far from the breast, but we still call it breast cancer because the cancer started in the breast, and that is what we need to know in order to come up with a good treatment plan.
Somebody who has just been diagnosed with metastatic breast cancer needs to understand that it's a chronic illness, that it’s an illness that will require treatment of one sort or another. Maybe there will be times without treatment, but for the most part, for the rest of her life.
It's not a curable disease, but a very treatable disease. So the first advice I would give to somebody who has just heard this news is to just take the time to come to terms with this. And to try to turn what feels like a terrible existential threat into a challenge by gathering good information, by seeking support, by taking the time that it takes, perhaps, to just accept it and then to move forward with trust in a good treatment team and a plan of action.
Treating metastatic breast cancer is a bit of an art. You need to know the biology of the cancer. These days we encourage our patients to actually understand the kind of drivers of growth of their tumors, so to speak, so that we could try to find new treatments.
If the disease is sensitive to hormonal manipulations, we now have an expanded repertoire of medications, medications that block the utilization of estrogen, that lower the amount of estrogen in the body, that are given in combination with other medications that block drivers of tumor growth, so there may be combination therapies.
So these days, for instance, we have patients who are for years on hormonal therapies alone with metastatic breast cancer living lives with excellent quality, going to work every day, maintaining their relationship, exercise and really having quite healthy lives.
For patients whose metastatic breast cancer is driven to grow by this HER2 mechanism, we now have also expanded treatment options. We have several therapies that basically interfere with that growth mechanism so patients can be on several antibodies at once, perhaps combined with some chemotherapy drugs in different protocols that we know work, have access to innovative clinical trials that are looking at new ways of blocking the growth of these HER2 driven tumors.
So again, patients who have HER2 metastatic breast cancer often have many years of productive lives and good quality of life. Then there are patients who have what we call triple negative breast cancers, which are the ones that we don't yet have very good targets for in terms of pharmacologic options. But we are, again, looking very closely at that and very carefully at that through clinical trials.
So it may be possible to go beyond just conventional chemotherapy, but also take advantage of some new compounds that are developed that target some of the new mutations that we are finding, even in these triple negative breast cancers.
So I think that the take home message is that understanding at a genomic and molecular level what drives the cancer to grow is key for us to come up with a right treatment plan. And there is every reason to be hopeful because the treatments are expanding so quickly
Sometimes these are standard treatments, most often they are available through clinical trials, so that they can really have a very rational, reasonable treatment plan. Perhaps at times they will be able to take treatment in pill form, perhaps at times they will need to take some intravenous drugs.
All of these are put together in a sequence based on what is most likely going to be effective for that particular woman. So for metastatic breast cancer, unlike the first stages of diagnosis, we try to figure out how urgent it is to get a good response and what is the most likely medication that will work while providing good quality of life.
Kim Dowling: There were different decisions I had to make on treatment options. When I was first diagnosed, I did go get a second opinion and there were clinical trials that I could sign up for, and I initially chose to stick with conventional treatment. That just made me feel more comfortable. I went to a metastatic breast cancer conference geared towards patients, and they have them annually at different cities and hospitals.
I found out about a vaccine trial that was offered at John Hopkins. So in my mind I thought okay, that would be an option for me in the future. So I did end up participating in that trial down to John Hopkins.
And the reason why I chose that particular clinical trial and didn’t initially was I could stay on the current treatment that I was on, but it was adding something to it that might help. So that made -- and it had few side effects so that made me feel comfortable.
Paige Sincliar: Clinical trials, to me, are the option that waits out there in the wings. What I'm doing is working, and it’s helping, and it’s giving me quality of life. If at any point, that shouldn’t be the case, then I would look at clinical trials as my next choice, or if I saw that there was clinical trial that was so amazing that I wanted to take that chance. Then, I would do that.
Dr. Schapira: Clinical trials give patients access to innovation – new drugs, new biologic treatments. It allows a patient, perhaps, to have access to a treatment that is just coming into the clinic and has not been yet administered to many patients so we are still in the phase of trying to figure out how to dose it and how often to give it
So clinical trials are really, really important and should be on the radar screen of any patient who is diagnosed with metastatic breast cancer. They are a thriving part of our treatment armamentarium and it is really important to start to think about them almost at the time of diagnosis.
Balancing the effectiveness of treatment with quality of life becomes very important for patients with metastatic breast cancer. And that is part of the palliative intention of treatment. And by that I mean to really relieve all of the symptoms – physical and emotional – that the disease has brought with it for any individual patient. So the intention of treatment is to combine the best possible medical treatment with supportive services to maintain quality of life.
One of the most challenging aspects of helping patients who have metastatic cancer is to manage their pain. It is hard sometimes even to talk about pain because pain is so subjective
But some aspects of pain really rely on some creativity on both the part of the patient and the physician because some of the treatments we have for pain actually will also have their own side effects. So we need good specialists in pain, professionals who understand that sometimes having two, three, four different medications perhaps is better than just simply relying on one.
Paige Sincliar: Palliative care has been, it’s given me my life back. I had tremendous bone pain, and now I come in for an infusion of Zometa once a month, and it’s really tackled it. I also had, unfortunately, from the, that first chemo gave me a neuropathic pain that kept me up all night just wanting to cry. And they changed my medications up a little bit. I don’t have to take any narcotics.
Helen Karys: Well, I try to look fairly good every day and I go to work several days a week. I like to be with people. And I just like to keep very busy if I can.
I rest because I find I do get tired, and maybe part of it is my age also and the infusions make me tired so I do rest.
Dr. Schapira: So I think palliative care just enhances our oncology model. It is something that we should be aware of every day. And what it does is it helps us focus on the needs of the whole person – mind, body and spirit.
Kim Dowling: I do recommend that people get support, and that can come in so many different ways. It can be from family, friends. It could be an online support group. It could be an in-person support group.
Someone told me -- gave me a piece of advice to not go through this by myself and do it alone, and I really felt that having help from other people has really helped me get through it.
Paige Sincliar: For me, it’s a whole mindfulness thing of really not belaboring the past and not sinking into fears about the future, but really making every day count.
And just knowing that there are people who have a lot worse than me, and that I have the opportunity to make my life the best possible it can be. I just really just try and focus on that. I have an amazing support system of my kids and my sweetheart, and when I forget, he’s the first one to look at me and say, “You're alive to complain about it.” And that’s our mantra sometimes. But I'm alive to complain about it because it could be a lot worse.
Helen Karys: Well, I do go to church. It does help me. And I feel peaceful. Yeah. I was brought up in the Greek Orthodox faith so you did go to church. You went to Sunday school. You went to church. You did everything. But I don’t go like I should, but I do go and it’s comforting. And I have a lot of friends from my church. So that helps.
Paige Sincliar: I actually say something to myself every day. And every day, I say, “May my body be healthy, youthful, active, and strong. May my heart be loving, kind, and compassionate. May my mind be focused, sharp, witty, and wise. And may my soul be joyful, peaceful, and serene.” So, I say that to myself throughout the day to help me get back on track
I think asking your doctor about some of the support that they could get, if they can meet with a social worker to help with the other, you know, aspects that cancer affects. I mean it affects us physically, but it affects us mentally. It affects the family. It affects us financially. So I found a lot of help with meeting with the social worker. They’ve then found resources for me and that has really helped.
[Closing and Credits]
Cancer.Net®: Doctor-Approved Patient Information from ASCO®
ASCO's patient education programs are supported by Conquer Cancer Foundation of the American Society of Clinical Oncology. ConquerCancerFoundation.org
Dr. Mary Wilkinson, Dr. Raymund Cuevo, and the staff at Medical Oncology & Hematology Associates of Northern Virginia
Carolyn B. Hendricks, MD, The Cancer for Breast Health
Hasbro Children’s Hospital
Helen F. Graham Cancer Center at Christiana Care Health System
The Adele R. Decof Comprehensive Cancer Center at The Miriam Hospital. The Miriam Hospital is a teaching hospital of The Warren Alpert Medical School of Brown University
Video Footage and photography courtesy of:
St. Jude Children’s Research Hospital Biomedical Communications
Moffitt Cancer Center
University Hospitals Case Medical Center Seidman Cancer Center
The opinions expressed in the video do not necessarily reflect the views of ASCO or the Conquer Cancer Foundation.
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