Small Benefit in Adding Radiation for DCIS

Hester Hill Schnipper, LICSW, OSW-C Program Manager, Oncology Social Work, Emeritus

AUGUST 28, 2018

Confusing Condition Can Require Difficult Decisions

DCIS--ductal carcinoma in situ--is a very confusing and always distressing diagnosis. On the one hand, the prognosis is clearly better than invasive cancer, and most women are relieved once they understand the difference. On the other hand, different doctors, let alone regular people. refer to this situation in different ways: some call it cancer and some insist that it is not cancer. By definition, DCIS (or LCIS which is lobular carcinoma in situ) does not spread as it is contained within the ducts or the lobes of the breast. In contrast, also by definition, invasive cancer can spread, and that is what makes it so scary and potentially lethal.

My experience has been that women with a new DCIS diagnosis are just as distressed as their sisters with a new invasive cancer. Whether it is because they don't fully appreciate the difference or because cancer is part of its name or because there can be conflicting advice on how to treat it ... the fact remains that it is very upsetting. When I first began working in oncology, almost 40 years ago, DCIS was routinely treated by mastectomy. That was really baffling because, Beth Israel Hospital was treating many early invasive cancers with a wide excision/lumpectomy and radiation. (At that time, it was one of only three hospitals in the country offering this option.)

It didn't make sense that a theoretically less dangerous situation required bigger surgery. That all changed decades ago, and many women with DCIS are now told that a wide excision and radiation is the preferred treatment.

There are women with diffuse DCIS, meaning that it exists in many parts of the breast, who are told that they are not good candidates for a smaller surgery. A mastectomy is recommended, and most women whom I have known in this situation have gone ahead with that plan. 

As the science and treatment for breast cancer have become increasingly specialized, attention is focused on the smallest particulars of a woman's situation. Some women with DCIS are told that surgery alone is enough, most are told that adding radiation would increase the benefit, and some are told that a mastectomy is wisest. I have been thinking a lot about this over the past few days because of two patient experiences and because of a new study reported in JAMA that said that the combination of surgery and radiation was associated with a small benefit in reduced risk of breast cancer death as compared to surgery alone. Note that this is confusing in and of itself because DCIS does not spread and cause cancer death. The risk is that DCIS can recur, and, if it does, there is a chance that the recurrence will be invasive breast cancer.

My two patient discussions were very different, yet both illustrate the complications of dealing with DCIS and its treatment. The first woman had diffuse DCIS and underwent a mastectomy with reconstruction a couple of years ago. She has been exceedingly displeased with the cosmetic result of the surgery and experiences chronic pain in her chest and underarm area. She feels that it took way too long for her DCIS to be diagnosed, that months passed while she met with different doctors and heard different recommendations. She wonders, if everything had gone more quickly, if she could have had a wide excision and avoided her very unfortunate surgical experience. The second woman is newly diagnosed, has had a wide excision and been told that radiation would be wise. She is strongly disinclined to accept this recommendation and is trying hard to find a doctor who will support her decision to stop after the surgery. That search is not going to be easier with this new study in circulation. Note that she is clear that she will, in the end, do what is wisest to insure her good health, but her head is swimming with facts and data and uncertainty.

Have you been treated for DCIS? Please share your story here: http://www.cancercommunity.bidmc.org/