Interview with a breast surgeon with breast cancer

[Paula O]

An interview with Harvard breast cancer surgeon Dr. Carolyn Kaelin
http://health.gather.com/viewArticle...81474977299058
Dr. Kaelin is the author of f a new book, Living Through Breast Cancer: What a Harvard Doctor and Survivor Wants You to Know About Getting the Best Care While Preserving Your Self-Image, with Francesca Coltrera (McGraw-Hill, 2005). She has also produced a DVD, "Breast Cancer Survivor's Guide to Fitness," with Josie Gardiner and Joy Prouty.
Breast cancer is unique for every woman who experiences it. But every survivor's story offers hard-won knowledge that may help others grappling with a breast cancer diagnosis, treatment, and recovery.
Harvard Medical School's Carolyn Kaelin, M.D., M.P.H., is a breast cancer surgeon and director of the Brigham and Women's Hospital Comprehensive Breast Health Center in Boston. A wife and mother of two children, Dr. Kaelin was diagnosed with breast cancer in July 2003 at age 42. Below, she shares her unique perspective as both breast cancer expert and patient.
How did you find your breast cancer?
After cycling one Sunday, I removed my jersey and noticed a very tiny change in my breast, where the skin pulled inward ever so slightly. At first, I thought it was just a warp in the mirror, but no matter where I moved, it was still there. I absolutely could not feel anything. I had a history of harmless breast cysts, so I thought it might be a little cyst pulling on one of the supporting ligaments between the skin and the chest wall.
On Monday, I was scheduled to perform several surgeries. Between procedures, I went to our radiology department for a mammogram. Although the mammogram looked completely normal, they did an ultrasound - standard procedure if a lump or other change in the breast is found during a physical exam. During the ultrasound, I noticed many, many cysts in my breast. After a bit, I saw the expression on my colleague's face change. Clearly, she was seeing something that looked different from all the other cysts.
Later that day, I had a core needle biopsy, and the next day, the chief of breast pathology came to my office with slides in her hand to tell me that I had breast cancer.
What went through your head at the time?
Initially, denial. I thought, "No, this couldn't possibly be breast cancer. I'll go for breast imaging tomorrow and find out it's a cyst."
The most difficult time was between my diagnosis and learning the full extent of the disease, which was far greater than anyone anticipated. I had three breast-conserving surgeries as we tried to get clean margins. Every result that came back caught us off guard and spun us around. One cancer became three cancers. What had seemed to be a small cancer extended to over half of the affected breast. Breast-conserving lumpectomy evolved into a mastectomy. And hormonal treatment with tamoxifen changed to chemotherapy and tamoxifen.
Once I knew that I would need a mastectomy and chemotherapy, I wasn't happy. But having that knowledge shifted my mental framework dramatically, just on a dime. I knew I'd just roll up my sleeves, march ahead, and do it.
Some question the value of breast self-exams, which haven't been shown to lengthen survival time in women with breast cancer. What's your view?
Possibly the right research study has yet to be done: 10%-15% of breast cancers elude mammography and are found through exams by women or their clinicians. Generally, I recommend breast self-exams along with mammography and clinical breast exams, which have been shown to make a difference to survival, especially in women over 50. Women under 40, of course, do not have annual mammograms unless they have a family history of breast cancer, so a self-exam can find a cancer that would otherwise go undetected. I also have cared for patients who noticed a suspicious change that appeared between mammograms.
Most of the breast changes that women notice don't turn out to be cancer, but among those that do, a lump or thickening is a common sign. Less common is a dimpled spot where the skin pulls in, or a persistent reddened spot on the skin. Other possible signs are changes in the nipple, such as a newly inverted nipple, scaliness, or discharge.
To make informed treatment choices, a woman needs to know the full extent of the disease. What can she do during the diagnostic phase?
I think it's a good idea to gather second opinions, particularly on the pathology and breast imaging, which can change the course of treatment. Have the pathology slides reviewed by somebody who specializes in breast pathology at the hospital where you're being treated. Or the slides can be sent to another hospital to be evaluated. Subtle - and not so subtle - interpretations of the slides by an experienced eye may affect treatment. For example, is another surgery needed to clean up margins? Should chemotherapy be part of treatment?
Pathology information usually appears in several reports as different procedures are done. Typically, if you saw a breast surgeon for the initial biopsy, she would go over the report with you. A radiologist who performs a core needle biopsy may discuss the results with you or may send them to your ob-gyn or internist, depending on what you and your doctors prefer. You should feel free to request a copy of the pathology reports and any other part of your medical records.
Strongly consider having a radiologist who specializes in breast imaging look at the imaging studies - someone with a fresh set of eyes who looks at mammograms, breast ultrasounds, and breast MRIs every single day. Not infrequently, everybody is so focused on the obvious cancer that a tiny cancer elsewhere in that breast or on the other side is overlooked.
Breast cancer care involves a lot of specialists. How do you find the right ones for you?
It helps to speak with others who have gone through this to see if certain names come up over and over again. Other good sources of referrals are your primary care physician, breast imager, and breast surgeon. A cancer center or academic hospital affiliated with a medical school is an excellent place to check. Some hospitals have multidisciplinary teams - radiologists, surgeons, medical and radiation oncologists, pathologists, and possibly plastic surgeons - who work with you from diagnosis through treatment and recovery.
Breast cancer isn't like appendicitis: You get your appendix out, have one postoperative check with your surgeon, and never see her again. With breast cancer, the members of your team are members for life. They see you year after year for checkups. Even if you're discharged to the care of your primary care physician, you'll return to see them if something arises in the future. You want people you can trust and talk to and who listen. You should be confident that they keep up with the ever-evolving scientific literature on breast cancer and will take time to discuss how it applies to your situation.
It's a good idea to meet with several doctors. Even among a group of outstanding physicians, some may be better matches for you than others. Fortunately, while you may feel as if all of your treatment urgently needs to be completed, most breast cancers are very slow-growing. You have time to seek multiple opinions and assemble a team of clinicians that you feel comfortable with before moving ahead.
Cancer centers offer a comprehensive approach to breast cancer, access to skilled professionals, and possibly the latest treatments. But a local hospital may be more convenient. Is there a way to balance this?
Sometimes it's not practical to have all your care at a cancer center. But during certain windows, it may be worth traveling a considerable distance to obtain a second opinion. One such window is immediately after the initial diagnosis: It's important to have a trained set of pathology eyes and breast-imaging eyes look at all the data - and to have a comprehensive treatment team evaluate your situation and make recommendations. There may also be clinical trials that apply to your situation.
A second window is after you know the full extent of the tumor and your lymph node status. At that point, a second opinion can help you decide which oncology treatment options are right for you. Again, are you a candidate for any specific clinical trials?
Sometimes recommendations from outside experts differ from those of the local hospital; sometimes they're the same. Either way, the plan may be able to be implemented at the local hospital.
Who coordinates all the information and keeps the files?
Every doctor you see will keep a file recording your visits and medical information, but the physician leading the case often changes as you go along. For example, a breast surgeon might refer you to a medical oncologist to discuss neoadjuvant therapy - that is, chemotherapy to shrink the tumor before surgery. If that's appropriate in your case, the medical oncologist will coordinate your initial care; if not, your breast surgeon will. You can sign a form allowing your records to be copied and released when a new physician needs to see them. Some of my patients keep copies of all their medical records in a binder.
What else should a woman think about as she begins treatment?
Topping the list are things you can control that might affect longevity. Emerging rResearch suggests that women who gain more than 13 pounds during chemotherapy may not live as long as those who are able to maintain their weight. Make nutritious, balanced food choices. Clear out less healthful foods and stock up on healthier items.
Chemotherapy can make the ovaries peter out temporarily or permanently. Women who go through a premature menopause during chemotherapy have an increased risk of bone loss in the hips and spine. Daily calcium supplements paired with vitamin D can help keep bones strong, although sometimes medication is necessary.
Physical activity and exercise can help offset both weight gain and bone loss. Ideally, maintain your current exercise program, or commit yourself to starting one as soon as possible. Some days, fatigue may keep you glued to the couch. Just try to be active whenever you can and build up your routine on days when you feel better.
If you've had surgery involving the underarm lymph nodes, a mastectomy, or reconstructive surgery, regaining full range of motion in your shoulder should be one of your recovery goals. Otherwise, you may find it hard to reach up, for example, to get something on a top shelf or to close a car trunk - anything requiring the outward extension of your affected arm. You can begin a program of progressive stretches recommended by your surgeon when you are told it's safe to start range-of-motion exercises.
You knew a great deal about breast cancer before you were diagnosed. What about your own situation surprised you most?
Well, it surprised me that I had breast cancer. I eat well, I exercise, and, for most of my life, I've maintained a healthy weight. I did not have any notable family history or risk factors. And I think by being in the field and caring for women with breast cancer, maybe deep down I hoped that this would confer some kind of protection. So I was pretty floored when it became clear that breast cancer was going to be part of my personal life.
A week after chemotherapy began, I asked my oncologist whether I was having some kind of reaction. My mouth tasted like I was chewing on tinfoil. If I ate constantly, the taste would settle down, but within a minute of not having something in my mouth, it would be right there again. He reassured me that this is a common side effect of chemotherapy. With each cycle it started sooner and lasted longer. I found that sugarless gum, sugarless candy, and spicy foods helped. It was a joy when my taste buds came back.
During chemotherapy, I expected to feel a little pooped or to have to go to bed an hour earlier. I didn't expect to feel so fatigued that I simply didn't have the energy to participate in many parts of my life. During my five-year surgical residency, there were times when I was on call every other night, so I was used to being able to function well despite chronic low-grade sleep deprivation. In contrast, my fatigue during chemotherapy just leveled me. Even after sleeping for 14 hours straight and sleeping deeply, I would wake up feeling fuzzy-headed, lethargic, and not refreshed. With each cycle, it got worse. It took months before I started feeling like myself and didn't need to sleep for long periods at night and take naps every day.
Finally, it was a surprise to have my hair, which had always been as straight as can be, grow back curly after chemotherapy, looking like Little Orphan Annie!

[jaykay]

Great post, thanks

[sarah]

wow! this is a wonderful post. thanks.
sarah

[AlaskaAngel]

It is a really helpful personal account for those who are in the process of choosing initial therapies and getting through it.

I'd need to read her works to see whether she has any personal diagnosis and experience in dealing with recurrence or mets, loss of sexuality, economic impacts, and weight gain over time as she ages. Many of us have very little information about those things at the time when we are making choices with initial treatment and recovery.

AlaskaAngel

[Mary Jo]

Thank you Paula. Great post!

[Jackie07]

Found another book that's writtten by her:

http://www.amazon.com/Breast-Survivo.../dp/B0012FBAB0