Treatment Options & Side Effects

Treating DCIS is tricky, because we want to ensure sufficient treatment of patients who need it while avoiding overtreatment of patients whose DCIS will never become life-threatening. 

The standard of care includes surgery (either lumpectomy or mastectomy), radiation in some cases, and, if the DCIS is hormone receptor (HR)-positive, five years of hormone therapy.  Because DCIS is non-invasive by definition, these treatments can be viewed as prophylactic, that is, as preventing rather than curing breast cancer, or stopping the DCIS from getting worse.

The problem with the standard of care is that it does not account for different types of DCIS or the different risk profiles of patients.  As not all DCIS is created equal, there should not be a one-size-fits-all approach to treatment.  

There is a rising tide of more individualized, patient-centered care of DCIS.  Patient-centered care goes beyond the standard of care to take into consideration your specific individual risk of invasive breast cancer.  Factors that contribute to your risk level include whether your DCIS is low or high risk (based on your pathology report), your age and your genetics.  Your personal preferences and lifestyle should also be considered. Importantly, patient-centered care takes into consideration the impact of potential side effects on your daily life in making decisions about treatment.

Many DCIS patients have more than one reasonable treatment option.  For example, some women may be able to choose between a lumpectomy or a mastectomy (and possibly between a single or double mastectomy, with various reconstruction options), as well as whether to undergo or forego radiation and/or hormone therapy.  Active monitoring of low risk DCIS may be an option for some women. 

Work closely with your trusted doctor to choose a treatment plan that makes sense for you.  The best way to ensure patient-centered care is to educate yourself about DCIS and ask your doctor questions!  If you are not satisfied with the answers, or still unsure in any way, consider getting another opinion.

Taking ownership over your care may feel overwhelming.  DCIS treatment decisions are difficult and extremely personal.  Given the uncertainty that surrounds DCIS and the heterogeneity between different types and different patients, you are well-served to learn as much as possible about DCIS and your individual risk before finalizing a plan.  If you take the time to carefully evaluate all your options, whatever treatment decision you make will be the right one.

Surgery

The first step under the standard of care is to treat DCIS with surgery – either a lumpectomy or a mastectomy.

In a lumpectomy, the surgeon removes the area of DCIS and a margin of healthy breast tissue that surrounds it.  A lumpectomy is sometimes referred to as a “wide local incision” or “breast conserving surgery,” because it strives to keep as much of the breast as possible.  In some cases, the surgeon may recommend additional surgery to get clean margins (read more about margins here).  A lumpectomy usually eliminates the need for reconstructive surgery, depending on the amount of breast tissue that is removed.  

In a mastectomy, the surgeon removes all of the breast tissue.  A single mastectomy is when one breast is removed and a double mastectomy is when both breasts are removed.  The patient can decide whether she wants breast reconstruction to restore the appearance of her breast, and this can be done at the same time as the mastectomy or in a later procedure.  Breast reconstruction is performed by a plastic surgeon.

A number of factors are considered in deciding between a lumpectomy and a mastectomy, including: the size and grade of the DCIS, whether the DCIS expands across different quadrants of the breast or is confined to one location, the breast size and anatomy of the patient, a patient’s age and genetics, and the patient’s individual preferences.  A patient’s individual preferences may include such considerations as the desired cosmetic result, potential side effects, and risk tolerance.  In some cases, a patient may opt for a mastectomy instead of a lumpectomy because radiation and/or hormone therapy are not possible or preferred.

Like any surgery, these procedures carry risks and potential short- and long-term side effects.  The side effects may be physical, emotional and/or psychological.  Side effects may include pain, swelling, bruising, bleeding, temporary numbness or tingling in the breast and armpit area, scarring, changes to the look and feel of your breasts, potential infection, and risk of fluid collection around the surgical site (seroma).  If lymph nodes are removed in a mastectomy (which is far less common for DCIS patients), there is a risk of lymphoedema, which is swelling of the arm, breast or chest area with lymphatic fluid.  A mastectomy is a more involved surgery than a lumpectomy and carries a higher risk of possible complications and side effects.

Low risk DCIS patients may be able to delay or avoid surgery altogether by managing their DCIS with active monitoring (see below).

Radiation Therapy

Some lumpectomy patients go on to receive radiation.  Radiation therapy uses targeted, high-energy X-rays or other forms of radiation to kill any DCIS cells that may remain after surgery.  The treatment happens over the course of several weeks.

Radiation can decrease your risk of DCIS recurring or invasive breast cancer developing.  However, studies have shown that in cases of low-risk DCIS, radiation does not decrease your long-term risk of dying from breast cancer.  In other words, the breast cancer mortality rate of women who have radiation is the same as women who do not.

Radiation therapy can only be done once to a specific body part.  If a patient undergoes a lumpectomy and radiation and then develops invasive breast cancer, a mastectomy will likely be her only option.  Some DCIS lumpectomy patients might choose to forego radiation for this reason.

Common side effects from radiation can include fatigue, skin irritation and breast pain.  The skin of the radiated area does not always go back to its normal texture or color.  There can be a feeling of tightness or hardening of the soft tissues exposed to radiation.  Serious side effects are less common and include increased risk of lymphoedema and the development of secondary cancers and long-term damage to the lungs, bones and heart.  Ask your radiologist what measures will be taken to protect your heart and other organs in order to minimize these risks.

There are currently two genomic tests, also called genomic assays, available for DCIS that can be used to decide whether radiation after a lumpectomy would be beneficial.  The names of the two tests are Oncotype DX Breast DCIS score by Exact Sciences and DCISionRT by PreludeDx. There are some differences between the tests, but they both work by measuring the expression of particular genes to predict the risk of local recurrence and potential benefit from radiation therapy after surgery.  The tests can be performed on tissue samples obtained from a lumpectomy or, in some cases, a biopsy.  

Hormone Therapy

If the DCIS is hormone receptor (HR)-positive, five years of endocrine or hormone therapy is typically also recommended.  The name is misleading, as this type of therapy is actually hormone-blocking therapy.  Hormone therapy is medication that has the effect of blocking or lowering the presence of certain hormones in the body that can fuel the growth of DCIS cells.  By reducing these hormones, and specifically estrogen, it is less likely that hormone-positive DCIS or invasive breast cancer cells will be able to grow.

There are several different types of hormone therapy medications.  Tamoxifen is the name of the medication that is generally offered to pre-menopausal women.  Post-menopausal women may be offered tamoxifen or an aromatase inhibitor such as anastrozole or exemestane.

Hormone therapy can be a powerful tool to reduce your chance of DCIS recurrence or invasive cancer developing, but there are also a number of potential short- and long-term side effects from these medications.  Common side effects include hot flashes, fatigue, weight gain, joint pain, bone loss, menstrual irregularities, and changes in mood, sleep, skin, vision, hair and sexual desire, among others.  Potential serious side effects include blood clots and endometrial cancer.

Every patient reacts differently to hormone therapy, and some may be more or less sensitive to these side effects.  There are patients who refuse or stop taking hormone therapy due to side effects.  If you experience side effects , it is important to talk to your doctor about measures that might be taken to alleviate them, as well as whether there might be changes that could be made to the type of medication you are taking or the dose.  Recent studies have shown the effectiveness of some of these medications even at a significantly reduced dose.  

Active Monitoring

Some low risk patients may be able to avoid or delay surgery and radiation and instead undergo active monitoring. Active monitoring is a strategy for managing low-risk DCIS where a patient has regular imaging (including mammograms, MRIs or ultrasounds) and check-ups with her doctor to watch for any signs of worsening of the DCIS or invasive progression.  If concerning changes occur, surgery and other treatments may be warranted.   For some patients, active monitoring can be combined with hormone therapy to further reduce risk of invasive disease.  Click here for more information about active monitoring.