Wellinspired (WI): So we met at the Live Strong Summit in 2006 after both recently being in treatment. Tell us a little about your story.
Lillian Lorenzo-Luaces (LLL): In July 2004, I had an abnormal cyst in my breast and it was aspirated and biopsied immediately. It was confirmed to be cancerous and then I had a PET scan shortly thereafter and there was a very suspicious lymph node near my pancreas. I started Taxol, Carboplatin and Herceptin chemotherapy in September 2004, which took 12 weeks. Only major speed bump was my port became infected with staph and I had to take antibiotics. In January 2005, I had a bilateral mastectomy with immediate implant reconstruction. Fortunately, they didn't find any active cancer during the surgery.
WI: Why the choice to have the bilateral mastectomy?
LLL: The initial biopsy showed that I was ERPR negative yet HER-2 new positive. That data, coupled with the biopsy results, indicated that the chance of the cancer spreading to the other breast was very high. The doctor suggested I consider both; hence, I had them both removed. In February 2005, I started more chemotherapy, which was mostly for preventive measures: Taxotere, Epirubicin and Herceptin. That lasted for about 12 weeks and then I continued with Herceptin for another year until April 2006.
WI: That's great - you finished treatment in April 2006?
LLL: Not exactly! One of the implants became infected in June 2006 so it had to be removed. In December 2006, I had a DIEP flap breast reconstruction on both sides. The surgery took 9.5 hours! I woke up and the first thing I said was, "I'm hungry!" Around the same time, I had a series of genetic tests conducted that showed I was BRCA-1 negative but BRCA-2 positive. Basically, the BRCA-2 positive result meant I had a 70% chance of breast cancer, 26% chance of ovarian cancer and elevated risk of pancreatic, skin and other cancers. Thereafter, I began having transvaginal ultrasounds, pelvic ultrasounds and the doctors were monitoring a tumor marker protein called CA125.
WI: The hits just kept on coming. What happened next?
LLL: In December 2011, after consultation with my doctors, I elected to have a bilateral salpingo oophorectomy; basically they took out my ovaries, fallopian tubes and uterus. Since then, I have been on hormone replacement therapy, which was approved by my doctors since I was ERPR negative.
WI: Wow. We are all thankful you are doing well. How have you managed all of this in terms of support and finances?
LLL: My family has been there every step of the way. My mother has gone and continues to go to every appointment I have. Fortunately, I've had great medical insurance to help defray the costs. I'm guessing the total cost of treatment has been almost a million dollars!
WI: Can you give the readers a bit of detail on how many doctors have been part of your care team?
LLL: I've had an obstetrician/gynecologist, breast surgeon, oncologist, 2 plastic surgeons and an interventional radiologist. The doctors, as well as the nurses and administrators, have been so caring and supportive through all of it.
WI: So now that you have been through all of this, what advice would you give?
LLL: First of all, listen to your body. Second, go and see the doctor if something doesn't feel right. If you think you can't afford it, many states have a sliding scale or similar program to defray the costs. Don't just discard the bills - pay what you can. Remember, your life may be at stake. Third, stay positive. Your attitude will influence not only your outlook but how others interact with you. Next, take proactive measures with your care team. In my case, the proactiveness helped to motivate the doctors and nurses because I refused to have a pity party. Next, some people may pursue a (breast) cancer support group at the local clinic / hospital. For me, I chose not to - it just wasn't for me since I felt as though the group was "heavy" and adding undue stress to an already stressful situation.
WI: What advice would you give to women on losing their breasts (and in your case your ovaries etc.)?
LLL: With my breasts, I realized my life was at stake and saving it was top priority. Plastic surgery is ubiquitous and there are really good options out there. That came secondary, though. With my ovaries, that decision was much more difficult. In the end, at the cost of not having my own children, I still felt it was the best decision to minimize any risk of future cancer (due to being BRCA-2 positive).
WI: How to you stay so strong?
LLL: It's tough. I get "survivors guilt" when I hear stories of people that haven't won their battle. For me, I like to talk about it and try to put everything into proper perspective. After I rationalize everything and quiet the irrational thoughts, I try to keep myself busy. The biggest punchline: don't overthink it! Every cancer patient and survivor can drive themselves crazy with negative self-talk. For instance, with hormone replacement therapy, I started to get headaches and wondered, "do I have cancer again?” Like I mentioned, if you feel like you need to talk it through with someone, start with you family, and then go see your doctor if needed.
WI: What motivates you in life today?
LLL: Above all, my family and my job. I love working with children and families. My family and faith are my motivation to help others. I also have gotten involved with people doing things for young adults with cancer.
WI: That's cool. What are your favorites?
LLL: First Descents organizes adventure trips for young adults with cancer. They taught me that it doesn't matter if you don't know - you can always learn forever. It was so empowering. Also, the Lance Armstrong Foundation, which was really the first group that took the initiative to confront the problem of young adult cancers and survivorship.
WI: I'm so grateful for your time today. Thanks so much for sharing your story, expertise and advice with Wellinspired.com.
LLL: You're welcome! I like to share what I can when I can in the spirit of helping others.