Jessica Leip was diagnosed with metastatic breast cancer in 2013. Since then, she has become very active with the Metastatic Breast Cancer Project, an organization that collects samples and data from patients in order to accelerate research. We asked Jessica about her own cancer experiences and her involvement with the MBCProject:

Can you tell us a bit about yourself?

My name is Jessica Leip. I am 40 years old, and I am the mother to 8-year-old Hannah and 6-year-old Isabel. I also have a 19-year-old stepson, Justin, and 14-year-old stepdaughter, Courtney. I live in Framingham, MA, with my husband Scott and our children. I am a stay-at-home mom living with metastatic breast cancer. My family is the most important thing to me and my fuel to keep fighting this disease and never giving up. Some days I want time to slow down but most days I silently pray for a fast forward button so I can see my children grow up and be there for all their important milestones. I cherish my life and all the time I have with my family and make the most of every moment.

How were you first diagnosed?

In July of 2013, a lump was detected by my OB-GYN in my right breast. Other than the lump, I had no pain and was asymptomatic.  That same day, I was instructed to go straight to the hospital, where I had my first mammogram followed by a sonogram and then punch biopsies of the lump and axillary nodes. I went home that day with assumptions that this was probably a cancer diagnosis and not looking good. After pathology confirmed a stage IIB triple-positive, with 90% ER and a 3+ expression of HER2, I started neoadjuvant chemotherapy treatment. After a breast MRI, I experienced chest pain and went into the emergency room to get checked. The pain turned out to be muscular, but I was given a CT scan to make sure, and that is when the innumerable tumors were found in both lobes of my liver as well as my thoracic and lumbar spines and my sacrum. My cancer was then determined to be a de novo diagnosis—metastatic breast cancer from the beginning.

EEC8079B-2D02-4675-B3C5-7431616A2003 Jessica Leip

The MBCProject is an organization that encourages people with metastatic breast cancer to share their tumor samples and other data to help accelerate treatment research. What is your connection to the MBCProject?

The MBCProject came into my life last fall when I attended a conference at Dana-Farber Cancer Institute (DFCI) in collaboration with the Metastatic Breast Cancer Network. I met Dr. Wagle and Dr. Painter for the first time and learned about the project. After the conference, my social media feeds and online support groups were blowing up with information and links to register with the MBCProject. I registered immediately, it was very easy, I had to answer under 20 questions and sign a consent form for medical records and tumor samples. What interested me the most about getting involved was the personal attention Dr. Wagle and Dr. Painter were giving to MBC patients. They genuinely cared about our lives and what they could add to make an impact on research for metastatic breast cancer.

Why is the MBCProject needed?

I feel the MBCProject is needed because this is a patient-driven movement. This approach is much faster than any other traditional way of collecting data for research. The patient gives the data directly and signs consents to release their medical records and tumor samples, a saliva sample is also given. In less than a year, the project has over 2500 registered participants. The data they have collected about the types, subtypes, age, gender, race, responses to various treatment, etc. is incredible. One way the MBCProject will use this data is to look for common factors in why there is a particular response to one drug over another so in the future they will have accurate patient data to determine what the best first (and hopefully only) line of treatment would be. All of the information is put into a database and will be available for download to any interested researcher who wants to analyze the data to get a better understanding of the disease and make new discoveries. The information will be updated regularly so it will stay current. The potential impact the MBCProject could have is huge. It is giving the patients power to get involved and fast track advancement in treatments and a cure. This gives people like me more hope for the future. It gives more hope for a better quality of life for MBC patients to be treated chronically or cured from the disease. I believe that this database could potentially unlock those doors and give answers to the brilliant minds so that these discoveries are made at a faster pace.

Have you provided your data to the MBCProject? 

I absolutely have provided my data to the MBCProject. There was no question for me about participating. There very well may not be discoveries in my lifetime, but if I can contribute to research for the future and for destruction of this disease, I am all in. The patient experience is very special because, as a patient, you have a voice. The very specific data about living with MBC and being treated is coming from the patient and then it is cross-matched with medical records. A series of questions are answered online and then consent forms are signed electronically. A saliva sample test kit arrives in the mail with specific instructions on providing a sample. You put it back in the box, which is already postmarked and addressed to The Broad Institute and put it in any mailbox. That’s it, simple and done.

How has the MBCProject impacted you?

The MBCProject has impacted my life directly because for the first time since I’ve been living with MBC, I have found a ray of hope in research. When you are living with this disease, it becomes very clear that very little to no money from a lot of charities and foundations donate to research for MBC. I am pretty sure that most people are “aware” of breast cancer. Pinktober is here, and while people are aware of breast cancer, they aren’t aware of the fact that the ONLY breast cancer that kills is metastatic breast cancer.  There is no cure and in my opinion there is no race to cure metastatic breast cancer. MBC isn’t pink.

Jessica with her daughters Hannah and Isabel Jessica with her daughters Hannah and Isabel

What has been your personal treatment approach?

My treatment approach started as neoadjuvant chemotherapy until the mets were discovered, and then I needed heavy doses of taxanes along with targeted therapies and aromatase inhibitors. I also had a bilateral oophorectomy. I have had a tremendous response to the targeted therapies and have gotten 3 years of mileage so far out of the Herceptin/Perjeta combination. I have surpassed the median survival rate and some may call me an outlier at this point.

Did any of the treatments you have received have significant side effects?

The taxane treatments were really hard on me.  I was on heavy doses of taxotere that gave me fevers and dehydration. I had to have a couple dose reductions because there were some weeks that I couldn’t tolerate it. I eventually had to switch to taxol to clean the rest of the tumors out of my liver and bones. The taxol made my fingernails and toenails lift up and some fell off completely. The neuropathy was also bad, and I had trouble tying shoes or using buttons. I started weekly acupuncture which helped tremendously and brought back a lot of the feeling in my hands. I do still have mild neuropathy that is permanent but it is not disabling anymore. Water retention in my legs was painful, and I had to wear compression stockings whenever I was out of bed. Femara was the first AI I was on for over a year, and it caused my joints to be so stiff that I could barely walk each morning when I got out of bed. My oncologist switched the AI to Arimidex about 4 months ago, and the joint pain has significantly decreased. The Herceptin/Perjeta combo is tolerable every 3 weeks, although I know my heart is slowly paying a price.

What advice would you give to someone else dealing with MBC, or metastatic cancer in general?

My gosh, you would think this would be an easy question considering all I have gone through but nothing about living with metastatic cancer is easy. For me, the most important piece of advice I could give is to be your best advocate. Know your complete diagnosis and know all your options. Never stop asking questions and getting answers and have a trusting and open relationship with your oncology team. Also, support is so important. I didn’t know anything about metastatic disease when I was first diagnosed. I scoured the internet and pretty much had my coffin nailed shut. I found online support groups and attended national conferences for people living with my disease and the loneliness of a stage 4 diagnosis quickly went away. I got answers for my questions about symptoms, drugs and side effects from people who were walking in my shoes.

Is there anything else you’d like to tell us that we didn’t ask about?

Over the past 3 years, I’ve spent many nights crying and losing sleep and trying to figure out “Why me?” I don’t have a family history of metastatic breast cancer, and I am not carrying any cancer genes. I have finally accepted that I will never know why. I am not afraid of dying. I am afraid that without movements like the MBCProject, rapid advancements in discoveries will not happen. One of the hardest parts of living with MBC is trying to tell people that I am still very sick, and I still have stage 4 cancer. It gets so exhausting to try and explain that I cannot beat this. There is no cure. I can’t beat this. The MBCProject aims to beat it. The movement they have created and launched in less than a year allows patients to be involved and have their voices heard. I truly believe that this project will lead to discoveries in treatments at a tremendous pace, and I am so grateful to be a part of it. Researchers will soon have answers directly because of the MBCProject and people like me will get to see their children grow up. So much focus is on breast cancer and pink ribbons. Unless people know someone living with MBC, there is not much public education out there. We must educate and advocate for ourselves. Early detection and pink ribbons aren’t going to save me. I am very much aware of breast cancer and also very much aware of the fact that I have the only kind of breast cancer that kills. I will die of this disease. The MBCProject is turning a ship so that in the future, patients won’t be handed a death sentence with a diagnosis of metastatic breast cancer.

Read more about Jessica’s experiences with metastatic breast cancer at her blog, The Journey.