Diagnosed with DCIS- What Are The Treatment Options?

When I was diagnosed with DCIS- Stage 0 breast cancer, I was faced with many decisions. What were my treatment options? Since I had never faced a diagnosis like this before, I needed to do a lot of learning before making these decisions. I did plenty of research and had many conversations with my medical team to make my treatment decisions.  

Please Note:  I’m not a medical professional.  Please read my disclaimer and always consult your medical team for medical advice and planning.

I also worried a lot. There was a lot of anxiety and fear going on both inside of me and also with my family. We were all wondering if I would die of breast cancer. Was this going to progress to be metastatic breast cancer?

 I wish there were a way to answer that question definitively. But medical professionals don’t fully understand which types of DCIS progress to be invasive or metastatic. Perhaps one day we will know more. That is why studies are going on right now to find more answers.

DCIS- Active Surveillance?

The question of which types of DCIS need to be treated aggressively and which can be safely monitored is the subject of many ongoing research studies. Cancer treatment has many side effects and can also impact our mental and emotional well-being. Designing the appropriate level of treatment for DCIS patients is essential in order to maintain our quality of life after a DCIS diagnosis.

One of the most extensive ongoing studies to see if active surveillance for low-grade DCIS is an appropriate treatment methodology is the Comet study. There are also similar studies in other locations in the world to determine if this would be a way to minimize invasive treatments for DCIS. 

If you are interested in seeing if active surveillance through a research study might be an option for you, then I highly recommend you discuss the COMET study with your surgeon.  

I wasn’t looking forward to surgery, so I asked my surgeon if active surveillance could be an option. He told me that it wasn’t a conventional treatment path at this time and that he didn’t personally recommend it. That was enough of an answer for me. I have several benign lesions that are being monitored, and I’m content to have them stay where they are. If this area was of concern, I would rather remove it and follow a conventional treatment plan.

Conventional Treatment Options for DCIS

DCIS has a variety of possible treatment combinations. Some people may choose surgery alone, surgery plus radiation, surgery plus endocrine therapy, or all three. Working together with your medical team is critical in the treatment planning phase. I remember feeling impatient with some of the delays that happened along the way.

I was so frustrated when my lumpectomy was delayed due to some findings on my MRI. I wanted the DCIS out of me, but the medical team needed more information. Delays can happen along the way in the diagnosis and treatment process. Additional imaging can sometimes find things that need exploration.  

A delay of a few weeks can feel like forever. I know, I’ve been there. If you’re experiencing some delays, you are not alone. Eventually, the issue will be resolved, and the treatment will happen! Until then, perhaps working through some anxiety-reducing activities might help. Or scheduling a little fun in your day while waiting for that next biopsy…

1. Removal- Surgery

In my diagnosis process, the first step was to make a surgical decision. How was the DCIS going to be removed? My surgeon’s initial recommendation was a lumpectomy because of the size of my DCIS. Still, he wanted to make sure that he had as much information as possible before making a final plan.

In my case, there were two more important parts to my diagnosis journey. I needed more imaging and possibly genetic testing.

Genetic Testing:

Since I was 41 at the time of diagnosis, my surgeon recommended that I have genetic testing done. This would see if I was a carrier of a mutation that might make a breast cancer recurrence more likely. That began with a referral to a genetic counselor. I filled out a family history, indicating who in my family had previously had cancer. That was used, along with my age, to get insurance approval for the testing. 

I chose the most extensive genetic screening offered to me. I figured that this was likely my only option to get this type of test done and covered by my insurance.  

If I had a mutation that made me more susceptible to another instance of breast cancer, I would have decided to have a mastectomy. 

I don’t recall many moments of pure joy during the diagnosis period. The phone call with my genetic counselor that my blood test results had come back without a mutation was one of them! 

More Imaging:

The surgeon might order additional imaging after an initial diagnosis to make a surgical plan. In my case, I had a breast MRI. I won’t tell the whole story here, but I did write another post on my MRI experience.

This test resulted in 3 more biopsies for me! While I was not happy about the extra biopsies, I experienced greater peace of mind once they were finished. Breast MRIs are especially effective for individuals with dense breasts. They can see findings that do not show up on other imaging modalities such as mammograms and ultrasounds.

Lumpectomy or Mastectomy

Once the imaging and the genetic testing are complete, it is time to make a surgical plan.

In some cases, a mastectomy might be the recommended surgery for a DCIS diagnosis. If the area is large or in multiple areas of the breast, it might be challenging to remove it and preserve the appearance of the breast. Additionally, it might be your preference, for many reasons, to have a mastectomy. 

 I was offered the choice between a lumpectomy and a mastectomy. I decided on a lumpectomy because the area was small, and I didn’t have other locations of DCIS. I wrote a post that goes more in-depth about my decision-making process, which you can read here.  

Once the DCIS is removed with surgery, your medical team might recommend additional treatments.

2. Radiation

Research has shown that adding radiation after a lumpectomy can reduce the risk of getting DCIS in the breast again. In one study, the recurrence rates for DCIS in the same breast after 12.4 years were 11.4% in the group treated with surgery alone and 2.8% for women treated with whole breast radiation after the lumpectomy. For an excellent write-up of this 2018 study, see this article.  For more information, see this study as well. 

Radiation doesn’t necessarily provide a life-saving benefit for people with DCIS. However, it does reduce the risk of recurrence in the same breast. I decided to do radiation because reducing the risk of recurrence was important to me.  

As much as I liked my medical team, if I could reduce my odds of getting DCIS again, I was willing to give radiation a try!

One of the reasons that radiation is recommended after a lumpectomy is because imaging cannot pick up small areas of DCIS in the breast. Only after the area reaches a certain size can the DCIS be detected with our modern imaging. I decided to have the entire breast radiated to take care of the known area of DCIS and also any potential smaller areas of DCIS not visible yet under imaging.

I decided to follow up my lumpectomy with whole breast radiation. It wasn’t an easy decision to make, but I’m glad I did it. If you’d like to read more about how I walked through that choice, here is a link to that article.

If you have chosen to have a mastectomy, radiation will probably not be a part of your treatment plan. But, there are circumstances when radiation can be beneficial. Here is an excellent article to read if you are curious about the benefits of radiation after a mastectomy  

3. Risk Reduction For a Recurrence or New DCIS Diagnosis

Another component of DCIS treatment is to address the reason why it occurred in the first place. This is where the endocrine therapies come into play. If your DCIS was determined to be Hormone Receptor positive through the pathology, then your oncologist might recommend treatments to reduce the estrogen in your body.

These treatments are in the form of an oral medication taken anywhere between 5-10 years. Tamoxifen is usually prescribed to pre-menopausal women, while aromatase inhibitors are prescribed to post-menopausal women. For more information about endocrine therapies, please read more here. 

I was prescribed tamoxifen after my DCIS, and I took it for about 11 months. I ended up having some side effects that impacted my quality of life. After discussing the situation with my oncologist, we decided to stop the medicine. I’m grateful my team was willing to work with me and take my concerns seriously. Here’s a little more about my experiences with tamoxifen.

4. Regular Monitoring

Another component of treatment after DCIS is regular monitoring through imaging and exams. The frequency and type of imaging ordered vary depending on what surgery was done.

I have had mammograms, ultrasounds, and an MRI in the year and a half since my lumpectomy. I will be followed closely by my breast surgeon for the next five years, and then I might go back to the standard screening schedule. 

If you have chosen to have a mastectomy, then mammograms are no longer recommended. MRIs might be scheduled to check on the health of the implants. However, there hasn’t been a documented benefit to continue to order mammograms. Here is an article on screening after a mastectomy. 

Removal, radiation, risk reduction, and regular monitoring are all important components of the standardized treatment of DCIS. You may have all of these or some of these as a part of your treatment pathway. 

Medical researchers are continuing to find out more about DCIS and determine which treatments are the most effective for this condition. I’m excited to follow the progress of the active monitoring studies which might change the standard treatment protocols.  

Closing Thoughts on Treatment Options for DCIS

If you reached the end of this really long and somewhat technical post, thank you! I hope that it has been helpful. 

There is much more to our DCIS diagnosis than the treatment choices. We also deal with emotional and mental well-being challenges.  

Throughout my journey, I discovered that the more I understood about my DCIS diagnosis, the easier it was for me to cope with my fears. 

I’d love to connect with you more, so please feel free to comment or join me on social media if you have questions.