Ductal Carcinoma in Situ, Atypical Lobular, and Ductal Hyperplasia

QUESTION: I am 36 years old and was diagnosed in January with ductal carcinoma in situ. I was also told I have atypical lobular hyperplasia and atypical ductal hyperplasia. My doctor has suggested I have six-month mammograms and a breast exam by two different doctors every six months. If I were older, she said she would suggest tamoxifen. Are the six-month mammogram and breast exam appropriate treatments for someone in my situation, or should I go for a second opinion?

ANSWER: You asked about the best way to take care of yourself and be followed over after a diagnosis of intraductal cancer, with a background of atypical lobular and ductal changes. Let's look at the two issues separately:

First, treatment for intraductal carcinoma requires treatment to the whole breast, either by lumpectomy and radiation, or by mastectomy. In some women, lumpectomy alone may be considered if the lesion is small, low-key, and fully removed with clear margins. It wasn't clear from your e-mail if you had done taken this treatment step. Tamoxifen is also of benefit to women with intraductal cancer. All of these treatments aim to reduce the risk of ever getting an invasive cancer in the future.

Tamoxifen has been given to women 35 and older who are at high risk for developing breast cancer but who hadn't yet had the diagnosis. There are tamoxifen studies in women from intraductal breast cancer to every stage of invasive breast cancer, as you know. Quite a number of doctors would seriously consider recommending tamoxifen to you to reduce your risk of ever developing an invasive cancer. This benefit has to be weighed against the possible side effects, particularly in a young healthy woman such as yourself, who may be in the midst of child-bearing years. The best doctor from whom to get a thoughtful recommendation on tamoxifen is a medical oncologist, specializing in breast cancer, who has at least five years of practice experience. Is there someone like this near you?

Other factors that may influence how aggressive or low key you might want to be include your family history and your style of making decisions. For example, if there are many people in your family who've had breast or ovarian cancer, you may want to do whatever you can to reduce your risk of these potential problems. You may choose to pursue genetic counseling. If there were a gene abnormality in your family and you inherited it, then you might choose to consider prophylactic breast removal and maybe even ovarian removal. If your family is like most "average" families, and there is not a significant family history present, then such an aggressive approach is probably unnecessary. Your personal style might also be that you will do what is reasonable, and that you will stay tuned to new advances and act only when there is substantial proof of benefit.

Second, it's not clear what is the best way to follow someone like you. I understand how tired you might get of mammograms and clinical breast exams every six months over years and years. Be reassured that there are other things that you can do today, and also, with new advances, there will be new options emerging. I would encourage you to take advantage of advances that are already here:

• See if there is an MRI surveillance study close to home (check out the university hospitals near you).
• See if there is digital mammography available near you as an alternative to regular mammography. In digital mammography, the images are recorded on a computer (not on film) and can then be manipulated more easily. Centers that have this new technology are also more likely to be committed to being the best. Know that getting your insurance to pay for these studies could be a fight, but with persistence and a willing doctor, you can usually succeed.
• And last, but so important, you need to give yourself credit for taking such good care of yourself and for having the courage to deal this health threat in a take-charge way. Even though your health outlook is excellent, I'm sure your diagnosis shook up you and your family quite a bit. It's not what you thought you'd have to deal with at age 36, but you'll get beyond it with new strength and a better sense of yourself.

—Marisa Weiss, M.D.