Here are the stories of the people in our META-WHAT video! Photographs by Angelo Merendino.
Time to step it up
African American women die of breast cancer at a higher rate, and I started to wonder if it was lack of knowledge. Most don’t want to be part of a support group. But there are incredible online forums, where people can tell you about upcoming clinical trials, who can test your tumor and where to get grant money. I have a passion to try to help those who aren’t finding their way. I want them to know that you have to navigate your own healthcare. You have to know what might come next based on the makeup of your tumor, you have to be on top of it because you want as many options as you can get. [read more=”Read more” less=”Read less”]
Ten years ago I found a lump by my nipple that was exactly the size of a pea. I wasn’t alarmed; there is no history of breast cancer in my family, it didn’t hurt, and I am very careful about my health. But I still thought I should find out what was going on, so I visited my OBGYN, who referred me to a surgeon, who sent me for an ultrasound. Afterwards the doctor said they wanted to do some biopsies, but it probably wasn’t anything to worry about.
Then the phone rang. “Oh Sarita, this is Dr. [X], just calling about your biopsy.” Pause. “Unfortunately it’s breast cancer, invasive ductal carcinoma.” I was sitting on my bed with a piece of paper so I could take notes. I wrote out what she said and then I read it. I said, “I can’t continue this conversation right now.”
That was September 25, 2005. A few days later I turned 36.
I spent the whole weekend googling. I didn’t even know what I was researching, but I wanted to understand what my doctor was talking about at our first meeting. The consensus was that I should have a lumpectomy followed by chemotherapy. The cancer was in three areas, so there was a strong likelihood that cells were in other places my body. I did four rounds of chemo every two weeks—and it was rough. Then I started tamoxifen. But I had major complications—breakthrough bleeding, almost like a hemorrhage. I never took it again.
I was in a deep depression, so I started attending conferences to learn about the disease and how to live after diagnosis. I did yoga and changed my diet and began running half marathons.
In 2012 I found a training program for community health workers. Perfect; I could work with breast cancer patients. I met with the head of the surgical oncology department at a local community hospital and became her Patient Navigator. If patients didn’t show up to have abnormal scans checked out, I would call and talk them into it. I loved, loved, loved it; it was my perfect job.
But a few months in I started to have bone pain. I thought the half marathon mileage might be too long. One day I went to exercise, and I felt like I broke my back. Then my finger swelled, I got a major headache. When I ate, it felt like my tongue didn’t fit in my mouth. But everyone said I was fine, because I looked so good.
Finally, I told my nurse practitioner I had a patient with all these symptoms. She asked, “Who’s the patient?” I said, “Me.” She sent me to urgent care. My blood pressure was high and they thought I was suffering a mild stroke. They started to do tests. The CAT scan showed nothing. The blood work showed nothing. Then my boss got involved. She sent me for an MRI and had it fast tracked. The next morning she told me my cancer was back: I had a major tumor the size of a walnut between my skull and my brain, and it was in my bones, my liver, my lymphatic system. I’m blessed that I’m being treated by the best of the best; my working with head of surgical oncology saved my life.
I’ve always been in the field of helping people; now my purpose is fine-tuned. I’m back on the advocacy track, spreading awareness. People need to know they have to fight for their own survival. No one else is going to.[/read]
I’m in this for life. #lifer
I was breast-feeding my youngest when I found the first lump. The diagnosis was stage 3 breast cancer. So I did chemotherapy. I had a double mastectomy. I had radiation. And then I thought I was done. I thought that no boobs equaled no cancer. But that’s not always how it works, and at my second three-month check-up, a test showed that a liver enzyme was elevated. My doctor knew what that meant. She sent me for a bone scan and there it was. I have metastatic breast cancer in my spine and my bones. ER/PR +, HER2-, BRCA – breast cancer.[read more=”Read more” less=”Read less”]
The diagnosis was a punch in the gut. I didn’t even know what metastatic disease meant. I didn’t like how I felt on re-diagnosis, and I didn’t want anyone else to have that horrible experience. One night I had 15 minutes before going to dinner, and I had my hair done and my make-up on, so I grabbed my phone and made a flash-card video. It’s not rocket science; plenty of people have made them. I just wanted to help educate people, so that every man and woman would know that you don’t have to have breasts to have a recurrence of breast cancer. I made it to help metastatic breast cancer patents explain their situation to family members and family members to explain it to other people.
I was hoping maybe 1,000 people would see it, but the response was overwhelming. So, I started a Facebook page as a support system for other people. The hashtag #Lifer just came to me. Everyone uses the term “survivor,” but I’m not a survivor. I’ll never be cancer free; I’m in this for life. And that’s a message I would like other people to get. People need to live intently, to know that there is a purpose to every struggle. Yes, cancer slows me down at times—I’m on my fifth round of chemo—but what I can do while I’m here is really live and help others to see that. When you find the purpose of your struggle it gives you great comfort. Don’t get me wrong, I still have bad days, I cry, I’m depressed—and I do realize people die from this disease. But when I get depressed I make myself stop, because it does not help me in any way. It takes self-discipline, but you can do it.
I’m a cancer patient first and a mom right behind that, but I do try to make time for other lifers. People contact me constantly; they ask me about their treatment plans or about whether they need a recheck. A woman wrote me yesterday. She had finished her initial treatment—and then two weeks later, she was diagnosed with metastatic breast cancer. Because of my video, when her doctor told her she was prepared, she knew what he meant. That woman validated my existence.[/read]
It’s a team effort: your oncologist, your medication and your attitude
Whether you are a man or a woman, when you are dealing with breast cancer, your attitude is the primary power that you have to aid in your healing. I retired from my career in education in 2012 and this has been my new teaching mission, along with raising awareness around men’s breast cancer. The more involved I got, the more I realized this is the path I need to follow. Yes, my message is about empowering others, but it has also been very healing to share my story. It has been a gift to me. [read more=”Read more” less=”Read less”]
In 2007 I found a lump on my left chest area. At first my doctor thought it was a cyst, so we decided to wait. But a few weeks later I noticed that my left nipple was actually inverted. They told me I had breast cancer, which blew me away. I sat there thinking, “I can’t have this; it’s a woman’s disease.” I had never heard of men getting breast cancer. I gave over my full authority to the doctors, and went with whatever they said. They did a mastectomy and nipple reconstruction, and I started on tamoxifen. I was full of fear and steeped in denial; I just wanted to get to the 5-year mark. But internally, I was saying “no, no, no” to the drugs.
In 2010 I had a recurrence within the scar of the initial surgery. My oncologist said, “We really don’t know what to do with men who have been on tamoxifen and have a recurrence.” I thought, “Why don’t you know?” I had surgery and radiation, then my doctor put me on leuprolide. I had a really severe reactions to it. But when I told my doctor, she just offered additional drugs for side effects.
I refused them; leuprolide was doing enough to me. Her response was, “I’m not stopping the drug.” I thought, “Wait a minute, that’s not your decision, that’s my decision.” I realized I needed to take responsibility for myself.
Meanwhile, I had started doing yoga and reiki. I was loving the openness and centeredness that I was getting from them. They were doing more for my healing than the Lupron. I started acupuncture and working with an energy doctor and an integrated nutritionist. I found a new oncologist. And I decided to stop the leuprolide.
For four and a half years that’s what I’ve done, and my blood work has been excellent. In fact, my oncologist graduated me from having a checkup every 3 months to every 6 months to 8 months to yearly, because all my tests were coming back great. Then last year I developed a persistent cough. I thought it was allergies. But friends nagged me to get it checked out.
Because my dad passed away from pancreatic cancer, I get an endoscopic gastric ultrasound every year. So I asked my doctor to take a look while he was down there. He found two abnormal lymph nodes in my chest cavity and took a biopsy. I got my third diagnosis: I have Stage 4 Metastatic Breast Cancer.
Since the beginning, I had put up a wall to any treatment drug. But with this new diagnosis, I need to change my thinking. Now I welcome the drugs into my body every morning; I embrace them, and tell them that together we will work at informing the cancer that it is time to go—and that together we will make that happen without the side effects.
Again, it’s not about giving over my power to the drugs, it’s about recognizing that I still have a big responsibility for my health. My attitude is what I can use to help guide my healing. And so can anyone else.[/read]
This is what cancer looks like
A few months after my wife was diagnosed with metastatic breast cancer, we realized that many people didn’t understand how serious Jen’s illness had become. So, I turned to my camera and began to photograph our day-to-day life. Our hope was that if family and friends saw what we were facing every day, then maybe they would realize how much we needed their support. They didn’t have to say the right thing; there isn’t a right thing to say. The experience is different for every person and different every day. We just needed them to be there—not to be silent.[read more=”Read more” less=”Read less”]
Five months after we were married, my wife went in for a routine physical. Jen had had a lots of scares, but the “hard lump” had always turned out to be a cyst. This time she sensed there was something different in her GP’s demeanor. She got a mammogram, and the tech made adjustments, took lots of images. That alarmed her. Then the doctor walked in the room, which had never happened before. She said, We’re pretty sure this is cancer. It was: stage 3B.
Jen had a double mastectomy. She didn’t want a lumpectomy, she wanted the cancer gone. The surgery showed the cancer had spread to her lymph nodes. She had reconstructive surgery and chemotherapy, followed by radiation, all of which wrapped up around our one year anniversary. As far as the doctors could tell, there was no discernable cancer left in her body. That year had been overwhelming. There are so many things you don’t understand and so many words you can barely pronounce and on top of that you are in shock. The ideal thing would be to have a secretary with you at all the doctor’s appointments, because it is so hard to keep up with it all. But at least it was behind us.
Of course, Jen was on hormone therapy and having regular scans. Then in April of 2010 a scan showed that the cancer had metastasized to her liver and bone. I didn’t understand what metastatic breast cancer meant. I didn’t realize breast cancer could travel to other parts of your body. I thought maybe it meant she had liver and bone cancer now.
Our oncologist was really very special. She kept us as calm as possible. The initial cancer was small, so the idea was to find a chemotherapy that would keep the cancer from spreading. It was hard to accept that that would be considered a victory, that there would always be cancer in Jen’s body, that until there is a cure she would always receive treatment, that there was no not being in Cancerland.
The cancer started to spread. Soon, Jen was on methadone for pain. She was on a walker at age 39. And there was nothing I could do to make her better. I felt like a puzzle made up of pieces that didn’t make sense.
Meanwhile, most of our family and friends had no idea how to act around us. Communication evaporated. A lot of people were in denial; they didn’t understand that Jen’s life was coming to a close. But when they fell silent, it made us feel like Jen’s life didn’t matter to them. We were exhausted. Jen felt alienated from everyone around her. I was facing being a widower before I was 40. We needed help.
And so I took out my camera and photographed our life. We wanted our friends and family to understand what we were going through. It’s not always easy for people to read our story and see the photos. The pictures don’t pull any punches. I took the photos and I lived with Jen’s pain and they still aren’t always easy for me to see. But we were fortunate that people were willing to listen. And the most important thing happened: Our family and friends rallied to be by our side.
On December 22nd, 2011, at 8:30PM, just 16 days after her 40th birthday and less than five years after our wedding, my sweet Jennifer passed. She used to say, Love every morsel of the people in your life. Because of her courage in sharing her story, more people understand the importance of showing that love, every day.[/read]
Research holds the key to survival
According to the American Cancer Society, this year 40,290 women and men will die of breast cancer. If you do the math, on average that’s 110 people every day. And that number hasn’t changed in 20 years. But when you turn on the news, you never hear: 110 people died of breast cancer today. If 110 people died in Iraq or in a train wreck or as a result of terrorism people would be outraged. It would be huge news. But there is breast cancer fatigue. People think: Yes, the diagnosis is bad, but you’ll be fine, so it’s not really that big a deal. Unfortunately, that’s not true. Why not? Because research dollars have not focused on the kind of breast cancer that leaves the breast and kills metastatic breast cancer.[read more=”Read more” less=”Read less”]
In 1991, I was diagnosed with early stage breast cancer. It was found on a routine mammogram, in one breast, and the doctor gave me the option of a mastectomy or a lumpectomy followed by radiation. I was scared—and because I had two small boys I chose to have a bilateral mastectomy (both breasts) so that I would be sure never to have to deal with this disease again. After the operation my doctor said, “Go on with your life. You’re cured.” One year passed. Five years passed. Ten years passed. I thought I had beaten the disease.
Then, after twelve years I started having some trouble with my rib cage; the doctor suggested I get a bone scan. My ribs were fine, but my spine lit up like a Christmas tree. Those spots proved to be metastatic breast cancer.
Since my initial cancer had been hormone positive, I started taking an anti-hormone agent. Within ten months the cancer had spread throughout my skeleton to my liver. So we did a biopsy—which showed the metastatic cancer was hormone negative, and I now had HER-2 positive breast cancer.
Cancer can mutate. And research is finding that in 10-15% of recurrence diagnoses, biopsies show the metastatic breast cancer as being different from the initial breast cancer. Even within a particular site a tumor can be heterogeneous, containing cancerous cells with a different molecular makeup—one part is hormone positive and one part is hormone negative. Another problem with metastatic breast cancer is that your treatment may work for a while, but then the cancer becomes resistant. This disease is a real challenge. Certainly, it’s a challenge for the patient; it’s also a challenge for even the best clinicians.
Of course, no evidence of disease does not mean I’m cured. I still have regular scans, and still get regular infusions. But it means that the metastatic disease is too small to see. I feel healthy. I’ve had a long run—nine and a half years with no evidence of disease.
At the time of metastatic diagnosis, I was close to completing a 36-year career in education as a high school teacher and principal. When I received my news of no evidence of disease, I knew I had to use my teaching and speaking skills to advocate on behalf of other metastatic patients. But first I needed to educate myself about the science of this complex disease. I took a series of courses in the biology of breast cancer, clinical trials and quality health care offered by the National Breast Cancer Coalition (NBCC).
Now, I’m a consumer grant reviewer for the Department of Defense Breast Cancer Research Program and Komen; Chair of the Metastatic Breast Cancer Patient Advocate Subcommittee of the Translational Breast Cancer Research Consortium; member of the Advocate Advisory Committee for the University of Chicago Breast Cancer Research Program; Board member of the NBCC; and President of the Metastatic Breast Cancer Network, a founding organization for the MBC Alliance.
I’m involved in a lot of different initiatives, but as long as I can, I must try to make a difference. Many patients can’t due to the toxicity of the drugs—and they deserve better. Right now the majority of research really focuses on early stage breast cancer; only 7% of research grants funded between 2000-2013 related to metastatic breast cancer. But metastatic breast cancer is what kills. It’s not that we don’t have the brain power to help metastatic patients live decades with the disease; it’s just that we haven’t put our minds to it. AIDS went from being a death sentence to being a chronic disease. Today the mean survival rate for metastatic breast cancer is 2 to 3 years. I know one woman who lived 15 years. I’m at 12. I try to have a positive view: Carpe Diem. But, yes reality hits me in the face every day.[/read]
Listen to your body
The worst part is when your doctors don’t listen to you. I had told my husband, “I know my body, no matter what anyone says.” I kept telling the oncologist, “I have the cancer in my back.” But he said, “Mary, you’re OK.” He was wrong. Ever since I got sick I started looking up treatments, asking “Why can’t I do this?” They say, “Oh it’s dangerous, you might die.” Well I’m already dying. What’s their point? If I had listened to the doctors, I would have been dead the first year. So I say, ask questions—and if you don’t get an answer, get a second opinion.[read more=”Read more” less=”Read less”]
In 2009 I found a lump in my right breast, but it went away and I didn’t think anything about it. Then it came back and started getting painful. There was a lot of heat, like I was on fire. And my breast felt like it was going to fall off. My daughter told a friend who told his mother who is a nurse. She said, “You have breast cancer.”
After my biopsy I walked into my doctor’s office, and he looked at me and said, “I am so, so sad.” He said I had to have a mastectomy. I said “Do whatever you have to do, but get it out.” They took off my right breast and to top it off they took out 22 of 24 lymph nodes. The doctor said, “There is no other way to put it; you are infected with cancer.”
I had chemotherapy and then radiation. At end of January 2011 I thought, “OK, I’m done.”
Then my left breast heated up and was in a lot of pain. I went to the oncologist, who said “Mary, you’re fine.” I said, “No I’m not,” but he made me wait nine months. By then then I was really sick with an infection. I was sent to the Cleveland Clinic to treat the infection, and they did an MRI, a PET scan, a CT scan, every kind of scan you can think of. They found cancer in my spine and sent me back to Toledo to get the left breast taken off.
A year later the cancer had kept spreading. I never went into remission, never got cleaned up. So my oncologist didn’t want to see me any more; he said there was nothing they could do for me.
I started seeing another doctor. My fourth. She listened. She even wrote out my diagnosis: ER2+, HER2+, BRACH+…five years and not one doctor had told me they had done the test. We were going to start chemo all over again. We had a plan. But first she sent me to a dentist. The dentist wanted to take out all my teeth—top and bottom—even though the insurance said I could fix just the two that are broken. I said I would take out all my teeth when the dentist took out all his. I got a lovely letter from my oncologist saying she won’t treat me because I refuse to stick to the plan.
So here we are in 2015 and once again I am without a cancer doctor.
I can feel the cancer eating at me—like ants feel on your hand. I can pinpoint every spot where I have it.
But I thank God every day that my eyes are open. Just because I have terminal cancer doesn’t mean I’m dead. I’ve gone back to cutting my own grass just because I can. That’s surviving.[/read]