From: bezzybc.com
Learning your breast cancer has grown or spread may leave you feeling overwhelmed. Knowing what questions to ask can help you make informed decisions that support your health.
If you’ve just learned your cancer spread, you may have a million questions you can’t quite verbalize. Asking questions can help you get personalized insights into your diagnosis and treatment options. You can then engage in shared, informed decision making with your care team.
First, jot or tap down the questions.
“I always recommend writing them down,” says Marissa Tadi, MSN, A-GNP-C, a nurse practitioner. “The best strategy varies by person and their learning style, but I’ve always found that physically writing things down helps me remember them. However, writing them down in your phone Notes app is also a great option since it removes the possibility of forgetting a physical list at home.”
You can go in knowing precisely what you want to say and then feel like a cat swooped your tongue. It’s understandable — this isn’t easy. Have a loved one or advocate with you at the appointment, if possible, to help you remember what to ask.
“They can take notes for you,” says Mariya Rozenblit, MD, a medical oncologist. “They can also ask questions for you if you feel uncomfortable asking them yourself.”
As for what to ask? I interviewed doctors to help you find the words by sharing 13 questions to ask if your cancer progresses and why they’re important.
1. Are we sure that this is a progression?
Yes, it’s OK to question your doctor’s diagnosis. Dr. Rozenblit explains that it can be unclear if it’s actually a progression depending on where the cancer appears to be or the type of scan or technique used.
“Some areas of the body are also more difficult to image than others,” Dr. Rozenblit says. “For example, it can be difficult to measure progression in bone[s].”
Dr. Rozenblit says you might have an option to have another, different scan or wait and repeat the same scan in a couple of weeks to make sure the cancer has progressed.
2. Where is my cancer, and where did it progress?
The answer to this simple question is vital information. Dr. Rozenblit explains that you’ll learn which organs are affected and whether the cancer affects their function.
This information can affect your treatment and help you better understand what symptoms to expect.
3. Should I get a biopsy?
Dr. Rozenblit says biopsying lesions (damaged tissues, including tumors) after detecting cancer progression can better inform your team on how you’ll take to treatment and the types of therapies you can receive.
A biopsy of the progression of the disease could give more information on the cancer and help target the treatment better by better identifying mutations.
For instance, doctors may note a mutation that makes you eligible for a clinical trial or novel treatment.
4. Should I get a second opinion?
You don’t have to ask this one, but believe it or not, doctors welcome and recommend getting a second opinion.
“Cancer treatment is constantly evolving as new data emerges,” Dr. Rozenblit says. “It can be helpful to have a second pair of eyes evaluate your case.”
It’s crucial for you to understand all of your options, agrees Amy Bremner, MD, a breast surgical oncologist. Dr. Bremner notes that second opinions can help you solidify and feel more confident in your newly proposed treatment plan or learn of a clinical trial that’s potentially a good fit.
5. What treatment options are available to me now?
“This can open up discussions on how effective the same or new treatment will be and the potential side effects,” Dr. Bremner says.
Andrew J. Shapiro, MD, a board certified general surgery specialist, explains that some treatment options may no longer be the best fit depending on your cancer’s stage.
However, Dr. Shapiro says you may learn about other more promising treatments — although potentially more aggressive. You may also wish to pivot to palliative care, focusing on symptom relief and quality of life.
“Having an open and honest conversation with your doctor ensures that your treatment goals are aligned,” Dr. Shapiro says.
6. What are the risks and benefits of my treatment options?
This question ensures you and your team explore the pros and cons of each treatment option. Your care team should work with you to develop and carry out the best treatment plan for your situation as the cancer progresses. It’s not as simple as putting a cookie cutter into dough.
“Just as cancer is unique to everyone, so is their treatment plan, so understanding the potential impacts — good and bad — of those treatments are important to finding the best course of action,” Tadi says.
7. Will treatment affect my ability to perform work or other daily activities?
It’s a good idea to understand what a treatment plan will look and feel like in your day to day.
“Some people work through treatment without any significant changes to their schedule,” Tadi says. “Others work with special accommodations at the office, and some will need to adjust or reduce their activities to accommodate treatment. Speaking with your doctor about how treatment impacts your life can help manage expectations and better adapt to changing needs.”
8. How will we know if the treatment is working?
When exploring new treatment options (or deciding to try them), Tadi says it’s helpful to understand the benchmarks.
Equally important: “It could also be helpful to know about potential warning signs that the treatment isn’t right,” Tadi says. “Knowing those factors from the start can help you as you progress.”
9. Are there any clinical trials that may be right for me now?
Cancer research evolves rapidly, and you may be able to participate in a clinical trial for treatments that are not yet available to everyone.
“Clinical trials are often a way to get early access to a potentially more effective treatment option,” Dr. Rozenblit says. “It is worth discussing with your oncologist the pros and cons of clinical trials.”
10. What support services are available to me?
Cancer is more than a physical tax on your system.
“It can also weigh on you mentally,” Tadi says.
Your team can point you toward therapists and support groups, which some cancer treatment centers provide or host.
11. How can I involve my care partner or loved ones in my treatment plan?
Your care team may extend to a family member, friend, or romantic partner. But you may find the two of you are missing the mark, especially after hearing the news that your disease has progressed.
“I see families in the clinic who want to help their loved one on their cancer journey but don’t know how,” Tadi says. “Finding ways to incorporate loved ones into your care plan can benefit both you and them, and your doctor may have helpful tips and resources on ways to do just that.”
For instance, they may also benefit from a family support group or therapist.
12. Now that my breast cancer has progressed, what does this mean for my future?
You may be eager or scared to learn the answer to this one. However, it can paint a clearer picture of the path ahead.
“This information can help guide the decision making process,” Dr. Bremner says. “For example, will side effects of the treatments potentially offer little benefit and negatively impact [my] quality of life? These are critical questions to ask and understand to make informed decisions.”
13. What questions would you ask if you were me?
This one calls for a role reversal, putting your doctor in your shoes. It gives them a chance to practice empathy, and you the opportunity to hear what they, as a professional, would want to know — in case you missed something.
“Giving room for general advice and thoughts may bring up factors you didn’t know you wanted to explore,” Tadi says.
How to weigh your options after hearing the answers
Once you have the answers to your questions, you can use them to better inform decisions. Dr. Rozenblit recommends regrouping and reflecting, which will involve asking yourself some important questions based on what you’ve learned. These questions include:
- How effective is this treatment?
- How do I feel about the side effects?
- How will I manage the time commitment?
- What are my goals for the treatment, and how do they align with my values?
And if you still have more questions for your provider after engaging in reflect? Keep asking.
“I always recommend asking for clarifications,” Tadi says. “If there is anything your doctor says you aren’t sure about, ask them for more details or examples. Your doctors are there to care for you. Redundancies or silly questions don’t exist in your cancer care journey. It’s always best to ask a question twice than to not ask at all.”
Takeaway
If your breast cancer has grown or spread, it’s understandable to feel overwhelmed and frustrated. You may also find it hard to find words to describe your feelings or ask questions to figure out what’s next. However, asking questions will help you best guide your treatment. You’ll want to know what’s available, including clinical trials.
Learn the pros, cons, general outcomes, and time commitments involved. Your team should also welcome second opinions and imaging to confirm that your treatment is the best course of action and to confirm that the cancer has spread.
Remember that your mental health is also essential, and you and any family members or friends may have access to therapists and support groups through the treatment center or insurance. Once you have the information you need, reflect on the best route for you, and remember, it’s OK if it’s different than someone else’s (and if you still have more questions).
Barbara Jacoby is an award winning blogger that has contributed her writings to multiple online publications that have touched readers worldwide.