When most women are told they have DCIS or ductal carcinoma in situ, the only thing they hear is the word carcinoma. This immediately conjures up fear-filled nightmares of losing their breasts and all their hair, followed by their early demise.
When first diagnosed, most women know nothing about cancer. At a time when they are most vulnerable, they are suddenly overwhelmed with a flood of complex and often conflicting medical information. This can cause an unhealthy climate of fear, culminating in the attitude that more treatment is always better and pressuring them into rushing into treatment decisions that will affect them for the rest of their lives.
Fiona Kennedy, PhD, at Sheffield Hallam Universtity in the UK conducted a study regarding women’s perceptions from DCIS diagnosis to one year later. She found that “many women felt confused and conflicted by their diagnosis, with some being told they had cancer and some being told they did not……Women spoke about the contradictions of being told their condition was precancerous or noncancerous, but then being advised to have extensive, invasive treatment. When one woman’s surgeon told her she shouldn’t be so worried since she didn’t have cancer, the woman wondered why, then, she had to have part of her breast removed and had to undergo radiotherapy. ”
Doctors too are conflicted about DCIS, but often feel pressure to offer whatever treatment they have available, not only to keep their patients safe, but also to protect themselves.
In an effort to ease this fear for everyone, some doctors are suggesting that DCIS be renamed, omitting the word carcinoma. Although DCIS cells are abnormal, they do not have the capability of invading the breast or the rest of the body.
With the survival rate of treated DCIS at almost 100 percent, women have several options. Because DCIS is non-invasive, chemo is never recommended. Although some may need a mastectomy, a lumpectomy is often just as effective. Some women will not need radiation either. In fact, the challenge often is to make a choice that will not lead to over treatment. An excellent book on the subject is: Overdiagnosed: Making People Sick in the Pursuit of Health by H. Gilbert Welch
According to an article on WebMD, “we need to redefine how we think about breast cancer. Maybe it makes more sense to think of it like a chronic disease, like diabetes.” The fear may never disappear totally, but like DCIS itself, it can be managed effectively.
The initial fear can be eased in several different ways. Just knowing that you will not die from DCIS and that you also don’t need to rush into anything can be huge reliefs. This gives women time to educate themselves, so that the harms and benefits of each treatment option can be considered.
It is often a good idea to get a second opinion in order to find a doctor who does not pressure you and with whom you feel comfortable. Verifying your pathology is also important, as physicians base all treatment recommendations on a pathology report that can be quite subjective. Have your pathology slides sent to an expert pathologist. One such expert is Dr. Michael Lagios, a world renowned DCIS expert and pathologist, with a consulting service that anyone can use.
A proactive recurrence prevention plan can also be very empowering, especially if accompanied by the reassurance of tailored screening. Exercise, spend time in nature and eat healthy, nutrient-dense foods.
It is also important to find a support person or group. If you don’t have anyone that understands and you feel alone, please contact us (Donna Pinto:firstname.lastname@example.org or Sandie Walters: email@example.com). We created this site for this very reason.
It is possible to achieve peace of mind and a sense of well-being, even with a diagnosis of DCIS.