BEVERLY — Liesl Voosen Fields, 35, was diagnosed last year with inflammatory breast cancer, also known as IBC. The disease accounts for only 1 percent to 5 percent of breast cancer and presents itself with symptoms such as redness, swelling, and tenderness in the breast — symptoms that mammograms don’t always detect. There often is no lump, and there is no early detection for IBC.
“And the prognosis and survival and recurrence rates for this type of cancer are much worse than typical breast cancer,” Fields said. “The five-year survival rate is somewhere between 25-50 percent for IBC.”
But Fields forged forward with an aggressive treatment. Her constant positive attitude inspired her family and friends from Calumet, a Lutheran summer camp in New Hampshire where Fields worked during her high school and college summers, to form Lutherans for Liesl, a team in the American Cancer Society’s annual Making Strides for Breast Cancer walk. The team raised $22,000 last year within weeks of the walk, earning recognition from the society as a Making Strides Pacesetter team. The team participated in this year’s walk, held Oct. 14, and is still accepting donations.
Originally from Auburn, she and her husband bought a house in Beverly in 2004, two years after they got married. She is the global senior Web producer at Bain & Company, a global management firm, and still works part-time.
Tell me about your diagnosis. Did you know something wasn’t quite right?
I first noticed some pink/redness on my left breast in the middle of the summer of 2011. I thought it was weird, but chalked it up to a summer rash and figured I’d “wait and see” what it did. It started to get worse and soon I suspected I had some sort of infection. I hadn’t nursed my daughter for a year at that point, but thought perhaps I had a blocked duct that got infected. My symptoms were consistent with mastitis, though I had no pain. The redness worsened, the breast was swollen and
the skin started pitting a bit. Then my nipple started to flatten and I knew I had to get to the doctor. My symptoms progressed pretty quickly, but I didn’t let myself Google anything online … I think somehow I knew that it might be more than just an infection. So, I waited until after my family’s vacation in August 2011 and searched the Internet the night we got back. That is when I first heard of IBC. I had all the classic symptoms. My heart sank. I knew this terrible, rare disease was exactly
what I had.
The next day I was able to see my PCP in Boston. The look on her face confirmed my worst fears and she wanted to “rule out” IBC as soon as possible. She had one patient the year before me with IBC, so she was familiar with it. It was the ONLY other IBC case she had seen in her 20 years of practicing medicine. Because IBC is so rare, it is often misdiagnosed (as mastitis) or ignored. At that point, I began a whirlwind two weeks of tests and scans. Within days I was diagnosed with IBC in the left breast. The cancer had spread to two of my nearby lymph nodes and to one spot on my spine. This meant that I was diagnosed at stage 4, but what I always joke as “barely stage 4” … but the fact is that the cancer metastasized already by diagnosis. I cursed myself for putting off a visit to the doctor for so long. But I soon came to realize nothing good would come of that. I had to move forward and beat this thing. I started chemotherapy just 12 days after first visiting my primary care doctor.
Where are you undergoing treatment?
I am undergoing treatment through Harvard Vanguard Medical Center at Kenmore Square in Boston. They are affiliated with both Beth Israel and Dana Farber. My surgery was done at BI. My care team has been outstanding and my oncologist has always involved me in her decisions and been open to discussions about treatment options and different therapies.
Tell me about your options for treating your cancer. What treatment option did you decide to go with, and how did you come to that decision?
Treatment for IBC is different than early-detected breast cancer. It starts with chemotherapy, followed by a modified radical mastectomy (where they remove associated lymph nodes) and then radiation. At stage 4, by definition, the cancer has already spread outside the breast, so often people (and their doctors) choose to skip the surgery and radiation, opting instead for systemic treatment (chemotherapy, antibody treatments or hormone treatments). This focus on keeping the cancer at bay and improving quality of life is often referred to as palliative care. But, because I was diagnosed as oligometastatic (often defined as cancer confined to less than five lesions to a single organ) and I’m young, my doctor recommended we move forward with an aggressive plan with a “curative intent.” Basically, we wanted to throw everything we can at it…and that is still our approach. My cancer is HER2+, which means that it’s a fast-growing cancer, but also that there are a lot of new, effective drugs available now and on the horizon.
The decision for me to treat the cancer aggressively was easy. With a then 4-year-old and 17-month-old, I want to make sure I am fighting with all that is out there to be with them for a long, long time. My kids have served as a huge motivation and distraction. The thought of not being there when they grow up was — and still is — just too much to bear. I’m going to do everything I can to be here with them, my husband and our family and friends.
Where are you now in the treatment process?
I completed my initial chemotherapy in January of this year. At this point, I also received a clear scan, which was an amazing first-response to my significant amount of disease. A mastectomy was scheduled for Leap Day (which I thought was nice … not an anniversary I need every year!). But, it wasn’t in the cards for me. A routine heart echo found a 2 centimeter clot in my right atrium that was inadvertently caused by my port-a-cath (an implanted device which is used to access a vein to administer chemo). I was ironically hospitalized in the cardiac ward at Beth Israel on Valentine’s Day for more tests and to give the doctors time to figure out what to do with me. In the end, I was sent home and started daily injections of blood thinners, which I am still taking seven months later. I started back on chemo every three out of four weeks. We waited to see what the clot did on the thinners, with the expectation that it would “melt away.” Fast forward a few months and the clot barely changed. So, this summer, my care team decided the clot was stable and it was safe to move forward with surgery.
Seven months after I was supposed to have the surgery, I finally had my single mastectomy on Sept. 19. I am recovering well and quickly. The best part is that my pathology report came back and there was NO residual cancer! While my clinical response had been outstanding from the get-go, my care team and I were collectively holding our breath for the pathology report. IBC is sneaky and it really is almost unbelievable that they found nothing in the tissue and skin examined.
Starting in two weeks, I will move on to targeted radiation therapy for six to seven weeks. They will radiate my chest wall, under my arm and a targeted part of my spine. Even though my pathology came back great, the idea is to “mop up” any remaining cancer cells that may still be lingering.
Through radiation I will continue on a drug called Herceptin, a HER2-targeted therapy and a breakthrough drug that is likely at the root of my success thus far. I will receive a Herceptin infusion every three weeks for a very long time…either until it stops working for me or they find a cure for cancer.
What has been the hardest part so far, and why?
I think the hardest part has been staying strong and positive for my kids. Telling a 5-year-old you have cancer and later that you need your breast removed, is NOT easy and I wish it on no one. And yet, for me, staying positive and as optimistic as possible, was the only way I could get through this, though often difficult for a realist like myself. I had a couple weeks soon after diagnosis last fall that I felt sorry for myself and was weepy all the time. I quickly realized that it wasn’t going to get me anywhere. I need to enjoy the time I have with family and friends and make as many memories as possible.
Physically, the hardest part was probably the hair loss. It seems so superficial and vain, but losing your hair is such a kick when you are down. Not only do you feel crappy from treatments, but you LOOK like you feel. It’s not easy. And I was so fortunate in that even though I went through 35 chemo treatments this year, my hair started growing back in January, so I really only had a few months bald and a few more with super-short hair. And I’m still waiting for my eyebrows and eyelashes to fill back out to normal!
How have your family and friends supported you?
I have received an overwhelming amount of support from pretty much every aspect of my life. Whether it was help with the kids, making dinners for my family, rides to chemo, or just sending a package, a note or prayer, so many people reached out and supported us. I am so blessed and my diagnosis really drove that home for me.
One of my closest friends happened to be out of work last fall. She had been desperately looking and interviewing all summer, but to no avail. But because she was out of work, she was able to help our family out tremendously when we needed it the most. She was invaluable to our family, going to chemo with me or watching the girls when I couldn’t. When I finished the harsher, first chemo, she got a job offer and was able to go back to work.
Also last fall, friends from Calumet, the Lutheran camp Mike and I worked at, organized a benefit concert for us and a fund was set up by our church in Marblehead. We used the proceeds from the concert to take a spur-of-the-moment trip to Disney World in January, right after my first clear PET scan. My parents and siblings both dropped everything and found ways to be there to share in the magic of Disney with us. It was an awesome trip with priceless memories.
My colleagues at Bain created amazing and generous care packages for my family each month for about six months. Each one had a theme and a creative array of gifts for my whole family that brought smiles to our faces when we needed them most. My husband’s colleagues at Winter Street Architects in Salem also sent care packages and donated cleaning services to help make things
easier for us during a tough time.
My parents have also been a huge support to us, particularly this fall while I’m recovering from my recent mastectomy. They have been staying with us, watching the girls and just making our lives easier. And of course my husband of 10 years, Mike, has been with me every step of the way. I couldn’t have fought as hard without his confidence and assurance that I was just going to kick this cancer.
The prayers and well-wishes from family and friends have not stopped, even a year later. I am still supported and often overwhelmed by the love and thoughtfulness of others.
Tell me about Lutherans for Liesl. How did the team come about?
As the daughter and granddaughter of Lutheran pastors, I’ve been a Lutheran all of my life. And as a child, I was a camper at Calumet, a Lutheran camp up in Freedom, N.H. At age 16, I spent the summer as a CIT (counselor in training), followed by six life-changing summers on staff (I even met my husband at Calumet and we were married there in the Outdoor Chapel in 2002!).
Two of my fellow CITs and dear friends, Sarah Carlson Arens (of Melrose) and Shannon Dunne O’Brien (Medford), wanted to do something to help after my diagnosis. They quickly organized a team, “Lutherans for Liesl,” for the ACS’s Making Strides Against Breast Cancer walk in Boston. Sarah and Shannon are both my age and have young kids of their own. I think they felt this was
something that they could do at a time when I’m pretty sure everyone was feeling a little helpless and shocked by my news (me included). They created the team three weeks before the walk, a week after my diagnosis. They recruited other team members, mainly friends from our camp family, including my husband and parents.
I hear the team raised a tremendous amount of money last year — $22,000! How does that make you feel?
The support of the team was completely overwhelming. To me, the most amazing part was that there were very few donations more than $100, and there were no corporate donations. The sheer number of people who donated was incredible. An email went out to my colleagues at Bain & Company, telling my story and sharing a link to my husband’s Making Strides page. Within hours, thousands of dollars in donations flooded in from Bain employees, many whom I had never even met before. Their generosity and words of support were so moving. My colleagues — really my Bain family — contributed about half of the total funds we raised last year.
How are you doing?
As far as how I’m doing, I’m recovering really well from my surgery! I even went to a friend’s wedding this weekend, only two weeks post-op. My energy is starting to pick back up and I’m gearing myself up for the next step in this journey, radiation. By nature, I am a big planner in life. But my diagnosis with IBC has taught (or forced!) me to be more spontaneous and focused on today and making as many memories as possible with family and friends. During this past year, we took a trip to Disney
World (conceived and planned in three weeks!), packed the kids in the car and took a roadtrip to my sister’s wedding in Missouri (with stops to family in D.C. and Tennessee on the way), I flew to Germany for work, went to Baltimore with my husband for my brother’s engagement party, took a last-minute cruise with a dear friend to the Bahamas, and spent a week tent-camping with life-long friends and their families! Right now, I am enjoying planning a trip to the Big Island of Hawaii for my younger brother’s wedding in June. It’s been awesome to have something to look forward to and plan towards (since this year was such a whirlwind of spontaneity — still out of my comfort-zone!). Of course, the nature and viciousness of IBC doesn’t stray far from my mind. The sad and sobering fact is that the recurrence rate of IBC is extremely high, particularly within the first two years of diagnosis. But, I can’t live my life wondering what’s going to happen, so we are moving forward the best we can.
We will keep adjusting to any “new normals” along the way. And I refuse to let this disease be what defines me and my family because we are so much more than that.
Is there anything else you would like to add?
I would like to thank the American Cancer Society and the Making Strides Against Breast Cancer Boston team. Because of the staggering amount of money we raised in three short weeks, I asked the ACS if they could direct the funds specifically to IBC research. I figured it was a shot in the dark, but that sending an email to check couldn’t hurt. We were very fortunate as they were able use the funds to help support an IBC research grant. This isn’t something that ACS is able to do often,
and my case was a bit of an exception, and it makes me even more thankful that we could help in this way.
A lot of people are aware of breast cancer already. It impacts the lives of so many and with all the pink out there in October, it’s hard to miss. But inflammatory breast cancer is still unknown by most. And while it does account for less than 5 percent of breast cancers, it is still very real and a very scary disease. It is often found too late or misdiagnosed. I strongly urge women and men to read up on IBC and be mindful of changes in your and/or your partner’s body. Tell those you know about
IBC. Even though there is no early detection, early diagnosis could make a big impact on the life of one of your loved ones.