Dr. Susan Love Research Foundation

My world completely crashed shortly after my son's first birthday (Jan. 20, 2007), when my breast surgeon read the results of my breast MRI and told me that I had stage lll invasive ductal carcinoma with lymph node involvement.

A tumor board met to discuss my case; they were split down the middle as far as treatment options go. Half thought I should have neoadjuvant treatment (which I knew very little about); the other half thought I should have surgery first. I was 46 years old, and beyond overwhelmed—and it was up to me to make the final decision.

I am not an MD or nurse, but, luckily, I have over 25 years experience in healthcare communications and medical education. I understand complicated jargon, in medical terms, and I understand how to process medical information better than the average person. Of course, nothing in my life could have ever prepared me for a breast cancer diagnosis. But my background certainly helped me get accurate information, access to breast cancer experts, and second, third, and fourth opinions. Even so, I never felt like I had enough information.

I decided to have neoadjuvant chemotherapy. My treatment began on February 9 and ended on May 25—it was long, debilitating, and depressing. My surgery was June 18. I opted to have a bilateral mastectomy, even though the cancer was confined to my right breast and nodes. I had expanders put in, which was the beginning of the reconstructive phase. I began radiation therapy on July 16 and finished on September 7. I will have my ovaries removed this fall and will have reconstructive surgery in 2008. My tumor was HER-2 positive, so I will be on Herceptin for a year, along with tamoxifen.

Having breast cancer has been one of the hardest challenges I have ever endured, both physically and emotionally. As the mother of two young children, a 3-year-old girl and an 18-month-old boy, I didn't have much time to rest and recover during chemo, surgery, radiation therapy, or the physical therapy I needed to treat the lymphedema I developed. It has also been one of my most important life lessons. I experienced so much support for what I was going through. Most people never get to see how many peoples' lives we have touched, because it usually comes after life, at our own funeral. I got to see my Mom (she is the Saint of all Saints), my Dad, brother, my extended family (aunts, uncles, cousins), my husband and his family, my sister in laws, childhood friends, college friends (took turns flying out while I was going through chemo), work friends I have met along the way, my hip single friends from the city, my amazing friends from the Moms Club of Morristown (who set up a Helping Hands web site) all banning together to provide emotional support and to help out with child care, grocery runs, and meals. Everyone prayed hard and sent cards and e-mails. I think this tremendous support played an important role in keeping my inner soul calm. It also helped me to feel the best I possibly could as I worked to knock the dreaded cancer out of my system. I could not stop thanking people and I truly feel like I owe everyone that helped me something special.

I will never look at my mortality the same way again. I hope to dance with my daughter at her wedding, my son at his, and of course my stepdaughter, (who is much older) at hers. I feel like I have done everything necessary to beat this disease. I was always a good eater and was a big runner my whole life. Maybe that helped me deal with certain aspects of the disease better than someone who was not healthy and at a good weight. I eat more organic foods now and limit poultry and meat consumption. I have three important prognostic indicators that tell me I have hopefully beat this disease. I had an MRI prior to the surgery so I could see the before and after chemo scans, which showed that the 5.-something centimeter tumor that had been ramming into my rib cage was gone! The neoadjuvant route was the right decision, it didn't just shrink the tumor so the surgeon could get clear margins, it KNOCKED the tumor out! Following the bilateral mastectomy, my surgeon told me that "all she could see was microscopic cancer cells, but the pathology report was the final say.” The final pathology report read no evidence of tumor in the right breast, only microscopic cancer (in situ) found in breast. In addition, 3 of 15 lymph nodes were removed. I remind myself everyday how lucky I am, and how lucky I am to be alive.

Now, I want to take all that I have learned and that I am questioning to the table for a larger cause. What if all the breast cancer organizations banned together with the American Cancer Society (ACS) to form a larger coalition? We could be a super power and really make things happen, especially with regard to healthcare, access to care, insurance issues, prevention vs. treatment (after the fact), future trials, the environment’s role, plastics, etc. I am not Sheryl Crow, nor do I have access to funds as she does to make things happen in this area--and she's doing great work. But, in my own way, I am determined to do what ever it takes to move these important issues forward. I don't want my daughter and her generation to have to go through what I have gone through.

I have already begun speaking with other patients/survivors via the phone and I think I have helped them. I am also involved in an important educational initiative at the center where I was/am being treated. I feel strong about spreading the word about dense breasts (which I, like most young women, have) and how difficult it is for film mammography to detect breast cancer in women with dense breasts and why digital mammograms and MRI can be a better option. I completely fell through the healthcare system (at a different center). I had gotten film mammograms since I was 35 years old. What a waste of time that was!!! The first time I ever heard anything about dense breast as it related to mammography was when my surgeon was looking at the films prior to ordering an MRI, which is what ultimately got me diagnosed. She said, "Your breasts are so dense, you can't see a thing. This could be calcification, fibroids, cancer!!" When she said "cancer" I freaked out.

I went through four intense IVF cycles to have my daughter and I’ve wondered whether that played a role in my breast cancer. (The most recent research appears to indicate that IVF does not increase breast cancer risk—but will future studies show something different?) Also, what role does having children later in life, as I did, play with developing breast cancer? (Women who have their first pregnancy after age 30 are at greater risk of getting breast cancer than are women who have never been pregnant. Is the risk even higher if you have a first child after the age of 40?)

I really think there is so much more we can do in terms of prevention to make sure we don't get breast cancer. Dr. Love has often said, "I wonder if we are working on the wrong end.” I agree!