= Julia Draznin Maltzman, MD, OncoLink Senior Editor
: Thank you very much for agreeing to this interview. I know that this is only days before you leave for Italy for the summer, and so I appreciate your time and patience.
I must say your story is a moving tale of health triumphing over sickness. Your story is one of a wife married to an accomplished and well-respected oncologist, and of a talented, world-renowned chef by her own right. You cooked alongside Julia Child, made multiple television appearances, and published many of your own recipes. You also suddenly and rather unexpectedly developed breast cancer.
I have been looking forward to speaking with you to learn more about your experiences, not only how you handled it on a practical level, but also on a more emotional, and perhaps even irrational level. This is, of course, often the most challenging aspect. I believe that your story will add a more human face to cancer and would be welcomed by OncoLink readers.
: Dr. Caggiano, where are you practicing now? I understand your area of focus is breast cancer?
Dr. Caggiano: Yes, I work at the Sutter Cancer Center in Sacramento, California. I am currently semi-retired. I see many patients for second opinions and conduct many clinical trials, but on a limited basis now. I used to see breast cancer, multiple myeloma, and lymphoma [patients], but have now narrowed my work to primarily breast cancer.
: Please describe to me how the diagnosis was made and take me through your initial steps in trying to understand what happened. I would actually like to hear from both of you so please, one of you can start and the other can feel free to chime in at any point.
Mrs. Caggiano: Well, I'll start. I actually had a mammogram earlier that year which was, of course, negative. I remember well, it was a hot summer day and I was outside. Something fell onto my breast and I brushed it off. As I did so, I felt a small lump. I knew this should not be there and I waited for Vincent to come home and showed it to him. I was scared and felt very inconvenienced by it, really. I mean, I had a very busy life and had no time for cancer. I was also extremely upset and apprehensive about it. After all, I am the wife of an oncologist who is supposed to protect me from all of this.
Dr. Caggiano: Biba had a fine needle aspiration (FNA) done very quickly. This confirmed the diagnosis, and she went on to a lumpectomy with a sentinel lymph node (SLN) dissection. Her tumor was 2.0 cm in size with one lymph node involved with micro-metastatic disease. It was also hormone receptor positive. So, she was a stage II at diagnosis. That was four years ago. She was treated by one of my good friends and great colleagues. She got four cycles of doxorubicin and cyclophosphamide. This was before [the era when] we were giving a taxane for node positive disease. The chemotherapy was followed by radiation therapy and hormone treatment. Initially Biba took tamoxifen for three years, and now she has been switched to exemestane, which she is currently taking.
: Tell me about your first few treatments.
Mrs. Caggiano: I remember, after the first treatment, I had horrible nausea and vomiting.
Dr. Caggiano: Both acute and delayed. So for the second cycle they added more anti- nausea medication. Later she developed a metallic flavor in her mouth and lost all taste for food. This is very important to Biba, who has her own restaurant here in Sacramento. This side effect prompted a total dietary change for her. She changed many recipes and tried to deal with this new and somewhat unexpected side effect. Luckily, she never developed neutropenic fevers. But lack of taste was a very disturbing side effect of chemotherapy for her. After all, it took her away from her passion and that which makes her happy and fulfilled.
Despite all these side effects of therapy, I encouraged her to go back to work. I did not want her to become isolated, desperate, and emotionally depressed. She returned to running a restaurant, despite the risks of neutropenia and potential infections. But maintaining normalcy in your life is just as much [a part] of therapy as is chemotherapy and radiation. She did lose all her hair, but continued working in the restaurant throughout the therapy.
Dr. Caggiano: You know, this is something that, as a physician, I paid very little attention to, but it was a significant issue in my wife's life. She is in the food business. Food is her life and passion. She needs to come up with menus, taste foods, direct her chefs, and so on. She was unable to do her job -- she needed her chefs to taste for her. This is a perfect example of how chemotherapy can affect different people differently.
Mrs. Caggiano: Fatigue was another difficult side effect. One day I found that I could not complete one flight of stairs from the restaurant to my office. I just could not continue. I needed to get medicine that would help me with these side effects.
: What was your level of familiarity with this disease as an oncologist's wife? Had you known anyone with the disease before? Had you seen or met any of your husband's patients?
Mrs. Caggiano: No, not personally. But after I was diagnosed, I met thousands of people in my restaurant that had cancer. My restaurant is very close to the cancer center and many of [the patients] frequent my restaurant. You know, I never liked wearing a wig, and I used to wear a cap. When I would greet people in my restaurant, they would immediately take out their caps and tell me that they too went through chemotherapy and treatment. It was a very bonding experience. All of a sudden, people I did not previously know were sharing with me personal parts of their lives, and we could relate to one another. I got lots of attention and it was very therapeutic for me, as it turns out. My husband did suggest to me to return to work as soon as I could – just to keep my life as normal as possible. He was right. It made me feel better to go to work. I felt like I was doing something, being productive, it kept my mind off the disease, and it turned out to be very therapeutic to meet all these people who have had similar experiences and [who] went through the same sort of treatments. I had special dishes made up for those people undergoing therapy who had metallic tastes and needed to modify their diets. I had to cut out certain ingredients. I had to eliminate everything that is spicy, citrus, and anything with a strong taste. I actually have some of my new recipes online.
: But you must have benefited from the fact that you have an oncologist in the family by asking him things like, "Is this normal?", "Should I feel this way?", "What should I expect again from this?" etc. Things for which other patients may have to either call the office, search the Internet, or ask friends who have gone through the experience previously.
Mrs. Caggiano: Well, yes, of course. I did ask Vincent many, many questions, and at any time I wanted. It is not like other people who have questions and have to write them down and ask their doctor at the next visit. I could ask my husband right away.
Dr. Caggiano: I did explain things over and over again and in a step-wise fashion. Often, patients hear what they want to hear and not what you said, and this also happened to my wife. So I was available to explain things again and again when she needed it. I must say that I think patients expect to get a good doctor who knows the right treatment, but they also need physicians to pay more attention to quality of life. I think the most important thing that I recommended to my wife is to stay active. Not to isolate herself in this disease. I think that is the most important thing for people with any serious illness. We as physicians do not pay enough attention to the quality of life of our patients, but for them it is the most important aspect. Fatigue, loss of hair, loss of taste, etc, these are all issues they must deal with when they leave our office. Going through this illness with Biba certainly gave me a much greater appreciation for the importance of paying attention to such issues.
: Do you have children? How did they understand the situation, and what role did they play during the course of the illness?
Mrs. Caggiano: Yes, we have two daughters who are married, and each has two children. They were in their 30's when this happened, and they were shocked watching me go through this trauma. I mean, we all knew I was going to lose my hair, but I did not believe it until it really happened. They were very supportive. We are a very close family. They visited often and helped when needed.
: What were some of the low points of your ordeal/therapy?
Mrs. Caggiano: Certainly the weakness, the loss of hair, and the thought of having to go through yet another chemotherapy treatment. I also did not like radiation therapy. While I was sitting in the waiting room and looked around me at all the other cancer patients waiting for their treatments, I really felt like I did not belong there. Like I was at the wrong place or something.
Dr. Caggiano: I think another difficult part was [that] after the diagnosis was made, the feeling that every little ache, bump, and pimple was cancer. I still often have to reassure [her].
: What were some of the high points of your ordeal/therapy? Or were there any?
Mrs. Caggiano: Definitely, the completion of therapy. When I was finally done with everything and was able to taste things again. My sense of taste returned about 2-3 months after the completion of therapy.
Dr. Caggiano: For me the high point was when I saw Biba return to the restaurant, seeing and talking with her customers. I felt then that she was doing well – emotionally, psychologically, and of course, physically.
: How, if at all, has this experience changed your oncology practice or the way that you interact with breast cancer patients?
Dr. Caggiano: I now understand better the navigational support that patients need as they are going through this ordeal. One year before Biba was diagnosed, I hired an RN who sees all the newly diagnosed breast cancer patients. She tells them everything: who they see, how the surgical drains work, what cream to use on a radiation burn, diet, bandages, physical therapy for lymphedema, everything. She helped us tremendously. I found that she knew things that I did not. She was invaluable to us, and we were already at an advantage, as I treat people with breast cancer. I now understand how important this is for patients.
: How has this experience influenced your life as individuals, as a couple, and as family?
Mrs. Caggiano: I am an Italian. I am a realist. I know that there are no guarantees in life. I am very healthy now, and, you know, I am 68 years old. If I can keep going for another 10 years, that's great.
OncoLink would like to thank Dr. and Mrs. Caggiano for sharing their cancer experience with the world, so that others might benefit from their story and find inspiration from their lives.
You can learn more--and see the recipes Biba created especially for chemo patients--by visiting www.cancer.com.