I-Spy Recast DCIS Patient

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I-Spy Recast DCIS Patient

Helpful information to make informed choices about a DCIS diagnosis.

What is DCIS?

DCIS stands for Ductal carcinoma in situ (also known as intraductal breast carcinoma) and is a condition in which abnormal cells are found in the milk duct(s) of the breast. DCIS is considered an early form of breast cancer (pre-cancerous) and is not invasive. The abnormal cells do not spread to other parts of the body or blood. Most of those with DCIS have good outcomes with proper treatment.

DCIS usually occurs in women who are 50-64 years old and accounts for 20-25% of diagnoses for breast cancer Unlike other breast cancers that may present with a lump or pain, DCIS does not normally have symptoms associated with it. With no symptoms – you may wonder how do you know if you have DCIS.

How is DCIS diagnosed?

Most DCIS cases are found during screening mammograms. When the mammogram is read, DCIS shows up as bright white specks (calcifications) informing the radiologist that this is a suspicious area and needs more imaging.

Follow up images will be taken for a more in-depth look at the area of concern. After this, if there is a need for more evaluation an ultrasound and breast biopsy could be the next step. Once a sample is taken during the biopsy, a doctor will be able to determine if there are abnormal cells and if so how aggressive these cells are.

I have been diagnosed with DCIS, now what?!

Anytime the word cancer is used it can feel overwhelming and scary. It’s important to know that DCIS is not life-threatening and there are options for your treatment.

First thing you should do is consult with your doctor about your options. While DCIS is not life threatening, if left untreated it can advance to an invasive cancer and should not be ignored.

Traditional therapies and treatments include:

Lumpectomy usually with breast irradiation: Here a lumpectomy, or removal of a segment of breast tissue, occurs to remove the abnormal cells followed by radiation therapy to eliminate any remaining malignant cells. (About 20% of patients need an additional surgery to remove additional abnormal cells.)
Total mastectomy: A full breast removal, or total mastectomy, may be needed depending on the location and size of DCIS in relation to the breast size. This treatment does not require additional radiation therapy

What if I am interested in saving my breast or less invasive and/or alternative treatments?

Low-risk DCIS patients may be eligible for the Re-Evaluating Conditions for Active Surveillance Suitability as Treatment: Ductal Carcinoma In Situ (RECAST DCIS) Platform Trial.

While the idea of a clinical trial may sound intimidating for what is labeled as a low-risk cancer, the reality is most DCIS cases are over-treated. DCIS patients are treated very similar to those with more invasive cancers, when this is actually a very slowly progressing disease.

The RECAST-DCIS trial aims to eliminate unnecessary aggressive treatments, and instead preserve as much of the body as possible with as low toxicity to the patients as possible. It is changing the way medicine is done!

How does the trial work?

The trial offers eligible DCIS patients the option to skip surgery and undergo endocrine therapy with long-term monitoring. Endocrine therapies are treatments that control the growth of the abnormal DCIS cells by changing how the cells respond to hormones, ideally stunting the growth of the abnormal cells.

What should I expect if I join the trial?

If you decide to join the trial, you will speak with a clinical trial team member to determine if you are a match for the study. If you are a potential candidate, you will be asked to sign a form to give your consent for the study staff to perform tests and collect your health information. The tests include an MRI scan (if you have not already had one), providing saliva to test for cancer genes, standard blood tests and blood test for research. You will also be asked to complete a questionnaire before treatment and then every few months after starting treatment to track how you are doing.

After the tests are completed and you are confirmed to be a good match for the trial, you will be assigned to one of four possible endocrine therapies. These assignments are done randomly and the clinical trial doctors do not know in advance to which therapy you will be assigned. While random assignment may sound careless or casual, it is actually done to ensure that the treatments and results are completely unbiased and provide the best and cleanest data.

Once you are assigned to a therapy, you will give your consent to start treatment. You will return to see your clinical trial doctor at three months, and at six months after starting treatment. To assess the status of the DCIS as well as your health, you will receive MRI scans and blood tests 3 and 6 months after starting treatment, as well as a mammogram at 6 months after starting treatment.

If the treatment is working well for you, you and your trial doctor could decide to continue this treatment for up to 3 years. You will continue to be monitored by MRI scans or mammogram every 6 months during this period to make sure that you remain at low risk to continue on treatment. You or your doctor can decide to stop the study treatment and move to the traditional surgical treatment at any time.

This trial provides patients with a less invasive treatment while keeping surgery as an option for the future.

For more information or if you are interested in learning more please contact the site nearest you. Click here for site list and contact information.

What should I do next?

Have questions about DCIS related clinical trials? We can help guide you to answers.

Making Your Decision

Why Trials Are Important

Carefully conducted clinical trials give researchers and breast cancer patients the opportunity to work to together to advance all aspects of breast cancer care.

Understanding more about clinical trials:

https://www.breastcancertrials.org/BCTIncludes/WhyParticipate/TreatmentTrials/index.html

Not Everything We Call Cancer Should Be Called Cancer

By Laura Esserman and Scott Eggener

Dr. Esserman is a surgeon and breast cancer oncologist at the University of California, San Francisco. Dr. Eggener is a surgeon and urologic oncologist at the University of Chicago.

Reframing DCIS as an Opportunity for Cancer Prevention

By Kelly Hewitt, MD, and Laura J. Esserman, MD, MBA, FASCO

Dictionary of Cancer Terms

Find easy-to-understand definitions of terms related to cancer and medicine.

Tracey Heather

Advocate Liaison

As Patient Engagement Lead at Quantum Leap, I manage follow-up data projects for the I-SPY 2 Trial, develop strategies to strengthen patient engagement, and oversee the I-SPY Advocate group. After six successful years raising funds to support Quantum’s mission, I embraced this new role last summer, drawn by the opportunity to make a direct impact on the patients we serve. Each day brings new challenges and insights, and I especially enjoy supporting and collaborating with our inspiring I-SPY Advocates.

Outside of work, I am pursuing a Master of Public Administration with a focus on nonprofit management at SF State. I’m passionate about trail running, skiing, live music, camping, traveling, and collegiate gymnastics—my daughter competes at Oregon State. For the past 5 years, I have volunteered with SF CASA as a mentor to an incredible 18-year-old foster youth whose resilience continually reminds me of life’s true priorities.

Carolyn Clark Beedle

Carolyn Clark Beedle, a 2023 breast cancer survivor, joined the advocate program after successful completion of treatment with the UCSF Breast Oncology Program. Her experience working with a patient advocate during her TNBC treatment led to an understanding that empowering women to advocate for their own health and healthcare will contribute to improved health outcomes and broader access to care. Carolyn began advocating for cancer patients and their families during her treatment, now is a member of the Breast Science Advocacy Core (BSAC) with the UCSF Breast Oncology Program, and currently shares information and research with CFNP associates at La Clinica in the Bay Area to inform and empower their patient population.

Carolyn is continuing her on the ground training as an advocate reviewer with both Quantum Health and BSAC and is enrolled in the Patient Advocacy Training in Health Science course with Stanford Medicine. Her 30+ career in corporate marketing/communications, program development and non-profit leadership augmented by her breast cancer treatment experience serves Carolyn well in representing and communicating the patient voice and perspective.

She received her BA (History/English Lit) and MA (Public History/Research and Record Management) from the University of San Diego, is a proud fifth generation San Franciscan, and active board member with numerous non-profits that support social work and the arts.

Silver Alkhafaji

Silver Alkhafaji is a PhD candidate in the Pharmaceutical Sciences and Pharmacogenomics (PSPG) program at UCSF. She received her Bachelor of Science in Chemical Biology from UC Berkeley. Prior to UCSF, she worked in the Clinical Pharmacology Department at Genentech. Silver’s current research focuses on non-invasive liquid biopsies to predict response and side effects of immunotherapies and endocrine therapies in early-stage breast cancer participants in I-SPY 2.

Silver is interested in clinical outcomes research to advance precision medicine and improve cancer patients’ quality of life. She is passionate about health equity, inclusive research, patient advocacy, and women’s health.
Silver volunteers at the Patient and Family Cancer Support Center at UCSF where she assists in patient navigation and connecting patients and their families with resources that improve their healthcare experience while receiving cancer treatments and/or during survivorship.   Through her DEI work in her PhD program, Silver raises awareness around issues related to social justice and community building through organizing community-centered events. Additionally, she is a member of the Life Sciences Career Advisory Council at Thrive Scholars, where she enjoys supporting college students of color from economically disadvantaged communities in providing the opportunities they need to thrive at top colleges and in high-trajectory careers.   Silver is a member of the American Association of University Women (AAUW) Alameda Branch where she focuses her efforts on increasing membership of community college women coming from exceptional backgrounds: student parents, low-income, and first-generation college students.

In her free time, she writes poetry and prose on emotional healing, radical acceptance, and patience. Writing has helped her process difficult situations and connect with people on a deeper level.

Jane Mortimer

Jane is a breast cancer survivor and advocate dedicated to positively impacting the lives of women affected by the disease. Diagnosed with triple negative breast cancer in 2012, she participated in the I-SPY 2 trial at UCSF and has been cancer free for more than ten years.

Her advocacy journey began in 2003 at UCSF as a volunteer with the Patient and Family Cancer Support Center and Decision Support Services and she previously managed the Peer Support program at UCSF. Drawing on her experience in marketing and media strategy, she uses her skills to make a meaningful impact by supporting advocacy and research that improves outcomes for women living with breast cancer.

Jan Tomlinson

In March of 2023 , Jan was diagnosed with a large aggressive triple negative breast cancer and informed that her cancer was the” bad girl” of cancer and offered standard chemotherapy for 24 weeks. Devasted by the diagnosis Jan felt like she had a dire prognosis. After seeking several opinions, she opted to join a Clinical Trial program for her treatment. The trial consisted of significantly less chemotherapy, and monitored closely over a 12-week period, The data predicted a complete pathological response , and she then went immediately to surgery. Pathology reports supported that she had a successful outcome reaching PCR meaning the tumor was gone, and no residual cancer was found in the surrounding tissue or lymph nodes. Jan was thrilled when her surgeon advised her of the results. The experience made Jan want to give back and share information that she received when she was at a critical juncture in her diagnosis. She is so passionate about making sure that everyone knows that the standard of care is one treatment option.

As she says, “ clinical trials have to be on the table” Because she achieved PCR, she expects a great outcome. She wants to share her story and encourage other women to strongly consider and participate in clinical trials. Jan is a UCSF Patient Advocate, involved in several programs they lead. Jan also is a BLACC Cab Member. Jan recently was in Washington DC to participate on a panel on Clinical Trials for ISPY at the National Press Club. UCSF will be hosting the RISE Up For Breast Cancer event where Jan will share her experience with clinical trials.

Deborah Collyar

Deb is a connector who founded Patient Advocates in Research (PAIR) “where research meets reality,” bringing ideas and people together for medical advances that offer real results for diverse patients and families.

Her vast experience between the worlds of tech, communication, strategy, management, policy, and equity bridges gaps between patients, scientists, medical providers, payers, governments, and non-profits.

Deb infuses patient engagement into projects, gathers relevant patient input, and encompasses many diseases, programs and policies at grassroots, national and international levels through companies, academia, and governments.

Key patient insights are delivered throughout discovery, development, clinical trials, results reporting, data-sharing, standards, genomics, and into practice.

Her experience spans translational and clinical research, epidemiology, health outcomes, and health delivery research with academia, federal agencies, companies, and patient communities.