Letter from the Editor-in-Chief: What Breast Cancer Patients Need When Treatment Ends

Breast cancer remains the leading cause of cancer death amongst women in most countries. Photo by Getty

• Breast cancer awareness has never been higher, but public knowledge and support after treatment haven’t kept pace, said Marisa Weiss, MD, founder and Chief Medical Officer at Breastcancer.org.
• The widest gap is the “quiet phase” after initial treatment ends, when patients are left with questions about side effects, work, and family. Some turn to GLP-1s, supplements, and cannabis without telling their doctors, often fearing judgment, even though some can interact with cancer medications.
• To mark this Breast Cancer Awareness Month, Breastcancer.org has released a Breast Health Playbook providing 9 ways to lower your risk of breast cancer.
• Healthline’s Editor-in-Chief Robin Hough sits down with Dr. Weiss, a breast cancer survivor herself, to talk advocacy, awareness, and care.

Breast cancer awareness has never been higher. Every October, the world turns pink and the key messages—that early diagnosis saves lives and that knowing the risk factors reduces the risk—are hard to miss. 

Breast cancer remains the leading cause of cancer death amongst women in most countries, with an estimated 694,000 deaths annually and around 8.2 million women globally living with a breast cancer diagnosis, according to 2024 data from the World Health Organization (WHO)’s Global Health Observatory. 

But when October ends, and the wall-to-wall campaigns move on, what has awareness actually changed for those impacted by breast cancer?

For Marisa Weiss, MD, the answer is that there is always more to be done, and she’s uniquely placed to hold that view. 

Dr. Weiss has treated breast cancer patients for more than 30 years. In 2000, she founded Breastcancer.org, a not-for-profit that provides expert-reviewed medical and lifestyle information on breast health and breast cancer to millions of people globally.

Sixteen years ago, she was diagnosed with stage 1 breast cancer, becoming, in her own words, a “dual citizen” in that moment, with lived experience on both sides of the doctor’s desk. 

I had the pleasure of sitting down with Dr. Weiss as part of Healthline’s Breast Cancer Awareness Month coverage to talk about how awareness has changed care for the better for millions of people around the world, but why critical gaps remain, and how access to trusted information and community can help close those gaps. 

“It’s good that awareness is high, but knowledge remains low,” she said. The misconception she sees most is the belief that breast cancer is something that happens to other families.

“Most people think they’re off the hook because it doesn’t run in their family,” Dr. Weiss explained. In fact, 85%-90% of people who get breast cancer have no known family history and no known gene in the family, “so we’re all at risk,” she warns. 

For most, a diagnosis arrives as a shock. “They’re completely surprised, flattened by it. Their life is upside down, and they scramble to find what they need to know,” Dr. Weiss noted.

Breast cancer care: Be your own advocate

That aftershock caused by a diagnosis is at the core of why Breastcancer.org exists. Because the person whose life is at stake is increasingly expected to direct their own care and advocate for their needs, access to accurate and empowering information is critical in that process. “Decisions aren’t being made around the patient and for the patient in a bubble,” Dr. Weiss said. “Decision-making is supposed to be shared.”

With appointments hard to get and clinicians stretched, she said patients have to do more of the work.

You have to find your voice, use it, be your own advocate.

Marisa Weiss, MD

In practice, Dr. Weiss says that means preparing by writing down your family history on both sides and making sure your care team knows who you are. “What’s important to you? Who’s in your life? Do you want more children? Are you planning a vacation? All those decisions can have an impact on the care you receive.”

Gaps remain even with the best care

Where Dr. Weiss sees the widest gap is after treatment ends. Speaking from personal experience, she said: “I had the best care possible, and there were still gaps. You can find yourself alone with lots of questions and fears.”

Understandably, a great deal of focus and attention is centered on diagnosis and treatment, she said. Then it stops. “When your life is supposed to go back to normal, it never does. You have to find a new normal. That quiet phase can be really lonely and difficult.”

For Dr. Weiss, the questions that fill that silence are often as practical as they are emotional: “How do I know my treatment is working? How do I tell leftover side effects from new ones? How do I go back to work, and who do I tell? How do I talk to my kids? What about that new treatment I heard about on TV last night?”

That post-treatment period can also be the first time anyone has really had a chance to stop, take stock, and start asking “what next?” 

“You might think, what happened to me? Who do I want to be moving forward? How do I have a long life full of wonderful things, and remain as independent as possible?” 

What breast cancer patients don’t say in the clinic

Some of what patients do post-care never reaches their doctor at all, with Dr. Weiss pointing to a growing amount of personal care happening outside the hospital: GLP-1s, peptides, hormonal therapies, supplements, medical cannabis, to name a few. Breastcancer.org’s annual Pulse survey shows that people reported being interested in all of those things and more, and that they tend to learn about them online rather than risk the stigma of bringing them up with their doctors.

“They don’t really trust that their doctor knows much about these things,” she said, “and they don’t want a conversation that makes them feel judged. Some patients worry about what ends up in their medical record and then everyone’s going to know.”

Dr. Weiss says the stakes are real, because some of those choices can interact with cancer medications with potential for adverse or unexpected side effects. “That is why people turn to Breastcancer.org with questions that are personal, private, and important, including “what do I need to share with my doctor, and who’s on a need-to-know basis?”

The power of community, and its limitations

Peer communities fill part of that gap. “Breastcancer.org’s members share medical information, tips, and practical advice with people who have just had the call, or are about to start treatment and don’t know what to expect,” Dr. Weiss shared, and said that while she values that kind of support system hugely, it does come with a caveat:

People can be very ardent about what they did in their situation, but each person’s situation is unique. There’s only one you.

The same community can also be intrusive. Dr. Weiss describes standing at a party, drink in hand, when someone asks what kind of cancer you had, what you did, and whether it came back. Her advice to patients, which she took herself: “Put up your hand and say, ‘thank you so much for caring, but I cannot hear another story right now.’”

Information you can trust in the age of AI 

On the topic of AI and its impact on treatment and care, Dr. Weiss is cautiously optimistic. On the treatment front, she points to tools that help radiologists read mammograms more thoroughly and assess future risk as game changers in the fight against breast cancer. 

Breastcancer.org also uses AI for tasks such as finding citations and interpreting pathology reports. But like many, she is wary of misinformation. “When you’re fearful, you look for reassurance, and you don’t want to be reassured by misinformation. When it comes to health information, every word matters.”

Her final advice is for the appointment itself, which she says she has even struggled with. “When they start speaking quickly in complex medical language, you can get lost really fast. The risk is you kind of fake it. That must not happen.” 

“Do your research in advance. Write things down. Bring someone you trust as a second set of ears. Ask direct questions. Don’t worry if it sounds funny or silly. It’s always a smart question when you are dealing with your health.” Just be prepared for the questions to multiply from there. “Once you get a certain set of questions answered, that raises more questions. So just write it all down.”

If breast cancer has touched your life, know that you are not alone. Healthline’s Bezzy Breast Cancer Community is a space for peer support, feel-good stories, and advice in a welcoming, stigma-free environment when your lived experience is seen, heard and valued.

Robin Hough is the Editor-in-Chief of Healthline, and in addition to this regular Letter from the Editor column, he can be found every other Saturday in our Healthline Daily newsletter. He’ll soon be launching a dedicated Letter from the Editor newsletter coming to an inbox near you later in the fall.