Everviolet Chats: Laura Holmes Haddad, Public Speaker, Breast Cancer Warrior & Author of “This is Cancer”
We are pleased to introduce you to Laura Holmes Haddad – mother, public speaker, breast cancer warrior and author of "This is Cancer: Everything You Need to Know, from the Waiting Room to the Bedroom" – whose story is incredible and undoubtedly life-changing. “There’s nothing like having a stopwatch put to your life to have you take a good look around,” she said. Being diagnosed with a rare and aggressive form of breast cancer at the age of 37, while still breastfeeding her second child, was shocking, to say the least. But when doctors told her that her cancer wasn’t responding to intensive chemo due to her genetic and tumor profiles, her life-saving oncologist recommended for her to be accepted into an already-closed clinical trial that ultimately saved her life. After nearly three years of precision medical treatment, including chemo, radiation and extensive surgery, her miracle happened, and she was declared NED (No Evidence of Disease). It was then that Laura knew she wanted to share her story in order to help other patients, caregivers and the medical community better understand cancer from the patient’s perspective. “There are so many surprises with cancer, and I wanted to be able to take at least a few surprises off the table.” To learn more about Laura’s astounding journey, what some of her biggest hurdles and lessons were along her road trip, her thoughts on the future of cancer care, as well as get a glimpse into her immensely candid and heartfelt book, read our latest #EvervioletChats below.
Please share your personal experience with breast cancer?
In the summer of 2012, I didn’t feel well. I was tired and had pain across the left side of my chest. I had just turned 37, and my son was 11 months and my daughter was 4 years old. I was breastfeeding my son, and I thought the symptoms were just due to being a tired mom.
By November the pain was so intense that I went to my GP. I was no longer breastfeeding, but she said it was most likely mastitis, gave me antibiotics, and “just to be sure” suggested I see a breast surgeon at the local cancer center.
A week later, still in pain, I saw the breast surgeon. Dr. Kelley did a biopsy, ordered an ultrasound and mammogram, and two days later told me I had advanced breast cancer. I had to drive to the local ER immediately to get additional tests and start chemotherapy. It turned out I had an 11cm tumor in my left breast: it was inflammatory breast cancer (IBC) with axillary lymph node involvement, including supraclavicular nodes. IBC is a rare, aggressive form of breast cancer that usually affects young African- American women. The cancer cells attack the skin and lymph vessels around the breast. About 5,000 cases are diagnosed every year in the U.S. I was told I had about two years to live if treatment failed.
My family and I flew to MD Anderson in Houston, known for their breast cancer team, to get a second opinion. The MD Anderson team decided that the immediate treatment would not be different from what the community oncologists recommended, so instead of moving to Houston, we decided to return to the Bay Area. We got a 3rd opinion at UCSF where I received genetic testing; I discovered I was BRCA2+, PR+, ER+, and HER2neg. This testing would turn out to have a profound impact on my treatment options.
Because of the kids and the close proximity of my local cancer center, I decided to begin treatment there. I received two rounds of AC chemotherapy and the morning before the third round, I noticed another red bump on my left breast. The oncologist said the cancer was growing through the chemotherapy, and there was nothing more they could do.
We immediately drove to UCSF and met Dr. Mark Moasser. Based on my genetic and tumor profiles, he said the only hope was a clinical trial. He knew of the abbVie PARP Inhibitor Velaparib Phase I Extension trial, which combined Gemzar, Carboplatin, and Velaparib. But the trial was closed to new patients. Over 60 emails and letters in 30 days from friends, family, and friends-of-friends were sent to abbVie asking for a compassionate use waiver. They granted the waiver, and I was admitted to the trial.
The trial was being run out of the City of Hope, just outside of Los Angeles. So, in February 2013, I began my weekly trip to City of Hope for treatment. Some weeks were one-day trips, some were 2 to 3 days. Friends & family donated airline miles and hotel points.
The trial drug worked for me and in June 2013, scans showed my tumor had shrunk to 7cm, which made me a surgical candidate.
In August 2013, I had surgery at UCSF: a non-skin-sparing bilateral mastectomy with 19 lymph nodes removed and a simultaneous salpingo-oophorectomy – and clear margins!
In October 2013, I began 42 days of radiation in 13 fields with Dr. Francine Halberg. In December 2013, I resumed an oral form of the chemotherapy trial drug. In June 2014, I had reconstructive surgery at UCSF with saline breast implants.
May 2015 was when a miracle happened: I was declared NED after a series of clean scans and bloodwork and taken off the trial drug. I remain NED to this day.
Aside from lymphedema physical therapy, oncology check-ups, and a bone-strengthening drug, all is well! I get to do all the things I had wanted (walk my kids to kindergarten, watch them ride bikes, write a book) and more. I do not take one minute for granted.
How did you discover your team of doctors and additional care? What kind of relationships did you have with them?
I was referred to my first team of doctors by my GP. I had a great vibe with my first breast surgeon; she was smart and kind, and I trusted her implicitly. I did not have a great vibe with the oncologists and switched to another oncologist in the practice. While their support services were fantastic, I did not feel supported as a patient by the oncology team. They were not there at crucial moments when my family and I needed them.
When I ended up switching my care to UCSF, I felt safe in the care of Dr. Moasser. He was and is razor-smart, to the point, and his only goal is saving breast cancer patients. As a patient, I realized that you can’t expect an oncologist to be your emotional and physical “person;” you need to have a good vibe and feel comfortable, but you also need to take the smartest person in the room rather than the nicest one. And an oncologist that gives you his cell phone number and wants you to actually use it is the doctor you want to be with.
That was a big lesson that I didn’t know before all of this – I was allowed to not like a doctor.
What was the process of getting into clinical trials and what did you learn about this aspect of medicine?
I actually didn’t know much about clinical trials! But after my experience, one key factor to know is that your oncologist in the one who applies you to a trial on your behalf. So, you can search the databases (which is another topic!), but ultimately you need an oncologist who knows the latest cancer research and is familiar with the application process.
Once you apply to the trial, the trial could be full and/or could potentially not to accept you because you don’t meet the criteria. Another fact to take into consideration is that the trial could be run out of one or multiple cancer centers, so you have to be near that specific cancer center in order to participate. This could mean you have to travel for treatment or relocate. Also, not all aspects of the trial costs are covered by insurance – it varies by state.
Clinical trials ultimately offer hope to patients who have no other option, which was the way it was for me, and when you’re participating in one, you’re also helping move cancer research ahead. But it takes effort and knowledge to access the trials. From the medical conferences I’ve attended in the past year, it looks as though access to trials as well as how trials are run will evolve.
But it is a frustrating process that has its own ups and downs. Like everything to do with cancer, being in a clinical trial has its own learning curve.
Which innovative therapies were you treated with and based upon your experience, do you think there are some that clinicians should have access to?
My treatment was what is known as precision medicine. It hinged on a clinical trial drug given in combination with two other chemotherapy agents, Gemzar and Carboplatin.
I only knew about this trial because of my oncologist who is at a comprehensive cancer center and who specializes in breast cancer research and focuses on genetic/hereditary breast cancer. All clinicians have access to a clinical trial database, but they need to know which genetic tests they should apply you to and also what trials to look for. There is no way every oncologist can do this; there has to be a better way to look for trials for patients. This is an issue that the oncology field, in general, is grappling with.
What were some of the most unexpected hurdles along your cancer journey?
I could write a book about the hurdles! The one thing I didn’t know about cancer was just how many unexpected things come up. I thought it would be A-B-C, but instead, it was A-D-J-Z and back to A. When everything in your life is uncertain, the uncertainty can bring you to your knees.
Just a few examples:
The first and most unexpected was that my tumor didn’t “respond” to the first chemotherapy. In other words, the chemo didn’t work, and my tumor was growing despite the chemo. I didn’t even think that was a possibility given the intense chemotherapy drug I was given.
I also never expected to have to fight to access a clinical drug trial. I thought they welcomed patients with open arms! Some trials do, but there is so much to accessing a trial.
I also never knew you could not like your doctor, and that you could switch. I didn’t know I had a say in how I was treated as a patient.
The final, and worst one, was my daughter’s reaction to my shaved head. I thought shaving my head (and making a few pirate noises) would help her ease into the cancer journey. But in fact, she wouldn’t look at me for almost two days. It was heartbreaking in a way I can’t quite describe.
What do you think is the future of cancer care?
I think the future of cancer care will involve more personalized treatment options. There is some incredible progress being made in targeted therapies, albeit a long way to go. But I hope the future of cancer care will incorporate an integrated approach that allows the medical team to work in tandem with the health insurance company and the support team such as clinical social workers and physical therapists. This would bring such a different level of care to the patient. Instead of talking to each player individually and fighting for care on every level, the patient can have a more streamlined experience and focus more on healing. I hope this reduces the fear and anxiety that patients face when they get a cancer diagnosis. This is particularly true for people who don’t have a strong caregiver team. Trying to cobble together every aspect of care (oncologist, physical therapist, pain specialist, social worker plus health insurance pre-authorizations) can be completely overwhelming.
I’m also hoping that modern cancer care brings the most cutting-edge cancer options to every zip code in the U.S. Right now, access to quality cancer care depends on your zip code.1
What inspired you to write, "This is Cancer: Everything You Need to Know, from the Waiting Room to the Bedroom”? How long did the writing take and did you learn things about yourself in the process?
I wrote “This is Cancer” for other patients. During my treatment, I realized how much my family and I didn’t know. There was just so much involved in getting a cancer diagnosis, from the practical elements of getting rides to treatment and getting dinner on the table every night to the emotional, like how to tell your kids and how to get over the body shame issues after a double mastectomy. The doctors focus on the medical side – that’s their job – but there are a million things patients need to know, or at least be aware of. There are so many surprises with cancer, and I wanted to be able to take a least a few surprises off the table.
I wrote it for all cancer patients, not just breast cancer. I have talked to so many friends and so many survivors about all types of cancer, and there are some universal experiences.
My ultimate goal is to bring concrete, useful tips and information to cancer patients, caregivers, and the medical community from the patient’s perspective.
What kind of response have you received since the release of your book? Who have you been hearing from? If possible, please provide an example.
The most common response I’ve gotten is: There isn’t a book like that already? And I always smile and say, “Nope.”
Interestingly, I’ve been hearing more from caregivers who are thankful to have some perspective on what patients are going through.
I’ve had a tougher time with the medical community, and I wonder if it because of the privacy issues and not wanting to get into details of a patient’s experience. It’s fascinating but frustrating.
And I love the serendipity of the book. Just last month a friend was talking to a woman about a podcast and the woman said something like, “You mean the woman from California who wrote the book about cancer? She got me through my breast cancer diagnosis!” And I just love that because that was, and is, my intent – to help other patients. It makes my heart so happy that I have helped someone. It’s happening one patient at a time.
Do you have any other books in the works or new breast cancer advocacy endeavors that we should be looking out for?
I’m still working on getting “This is Cancer” out into the world. My next step would be to get it translated into Spanish and reach the Spanish-speaking audience. Chinese language rights sold, which is very exciting. To reach patients whose cultures don’t necessarily speak openly about patients – or cancer, for that matter – would be fulfilling.
What advice or words of wisdom would you offer someone newly diagnosed with metastatic cancer?
I would say: Take a deep breath and get a second opinion. Find two or three people you can trust that can help you navigate this world of cancer. It will be a long haul, so fasten your seat belt.
Also, make a plan. Even the most basic plan is helpful. Writing out forms, making hard decisions, and getting papers in order doesn’t mean the end is near. But planning when you feel well enough to do it will help put your mind at ease. It will also help those caring for you. This is particularly true if you’re a parent or a caregiver to either children and/or your own parents.
My final advice: Find a way to keep laughing. It is so hard to laugh when you are in pain, but it is impossible to keep going if you are stuck in depression, fear, and anxiety. Whether it’s a friend, spiritual guide, or therapist, find a way to let the light in. There are so many emotions that come with “the Big C” and letting them emerge, and then trying to cope with them, is crucial. I feel very strongly that this has an impact on your physical state.
Your story is incredible and undoubtedly life-changing. How do you feel it has changed you and your outlook on life?
I always joke that my kids get more ice cream because I had cancer. And by that I mean: I am more open to spontaneity than I ever was and less fearful of the little things. Before cancer, I would have enforced strict limits on when and where and how much ice cream, and now it’s more of an “as-long-as-you-eat-some-broccoli” approach to ice cream!
I also have a much more intense sense of time. I am more aware of how I spend my time. I’ve slowed down and really appreciated things. It sounds cliché but it’s true! There’s nothing like having a stopwatch put to your life to have you take a good look around.