Staying Informed and Advocating For Your Health
- For many survivors, ringing the bell doesn’t mark the end of treatment. Long-term therapies — like hormone therapy or CDK4/6 inhibitors — are often prescribed after chemotherapy or radiation to target microscopic cancer cells and help reduce the risk of recurrence.
- Understanding your options is essential. Four breast cancer survivors featured in a special episode of the Breast Cancer Dialogues delve into their personal experience with decisions around continuing treatment and emphasize the importance of asking questions, bringing a list to appointments, and feeling comfortable discussing side effects, risks, benefits, and costs with your doctor.
- You have a voice in your ongoing care. From managing fears of recurrence to weighing treatment choices, this inspiring group of survivors and breast oncologist Dr. Danielle Seidman highlight that open communication and self-advocacy help patients make informed, confident decisions about their long-term treatment plans.
Finding a doctor who you can trust, who pays attention to your personal concerns when it comes to an ongoing course of treatment is incredibly important. You want to make sure you feel comfortable discussing things like treatment options, risks, side effects, and even cost.
Read MoreFear of Recurrence: Taking Care of Mental Health
“How do you counsel your patients who are maybe done [with] active treatment but are really fearful of recurrence?” Hall, who is also a survivor, asked Dr. Seidman. Though Dr. Seidman explains that those fears don’t “necessarily go away,” at least not right away, she says “hopefully you have better tools as you get a little further past your diagnosis.”
“And so if there’s a fear,” she says, “you bring it to your oncologist.” Talk therapy and working on your mindfulness are things she suggests to help cope with those scary feelings.
For New York City native and finance professional Irene Hong, 37, she learned how to “reframe” her brain and live more in the moment. “What are you worrying about something that hasn’t happened,” she recalls telling herself. “I’ve never been the person that said, ‘Why me? Why did I get cancer?’ Bad things happen to good people all the time. There’s just so many variables. So all I can do is just move forward and live a healthy full life to decrease the risk of recurrence. So whether getting lost in playing tennis or doing yoga fitness is very helpful.”
Be Prepared: Make a List and Be ‘Well-Informed’
Shifting from mental health to medical treatment plans, Hall asks how Dr. Seidman counsels her patients to “make the decisions that are right for them and that are right for them long-term?”
“So I love when patients come in with a list. I think it’s fantastic,” Dr. Seidman says. “It means you’ve already done a bunch of research and now we can come at this in a place where everyone is well-informed and that really makes things a lot easier. I think it’s wonderful.”
Walking the women through her initial “neutral” approach, Dr. Seidman says by doing this, she is trying to feel them out, “whether they want to be guided with a heavier hand or if it’s they want to say, this is exactly what I want and I can weigh the pros and cons.”
Dr. Seidman says she tries to be “as objective about the data as possible” and then she gives her “personal experience what I’ve seen patients go through, what I’ve seen them have a better experience with or a worse experience.”
“And I think it’s tough. It’s tough to make the right choice,” she empathizes. “It feels like the choices are endless and that you make one wrong decision and that’s the rest of your life. The truth is that if your oncologist is giving you choices, chances are they’re both good choices or all good choices.”
“And if there were a wrong choice,” she adds, “it would probably not be presented to you. And I think we’re in a really nice place in breast cancer now that we have choices.”
Weighing the Risks of Treatment Side Effects
Delving into the physical effects from treatment, Hall brings up weighing out risks of side effects.
“If you look at any of these medications, absolutely any of them, they’ll list all kinds of side effects,” Dr. Seidman says, giving an example that if you “look at the side effects and the warnings for Tylenol, you’d never take a Tylenol.”
“But all of these medications do have risks and they do have possible side effects. I have plenty of patients who have zero side effects from these medications and nobody truly knows what side effects they will have until they try it,” she explains.
So Dr. Seidman tells patients, “When they’re nervous about starting a medication, I tell them all the time, ‘Look, I’m not putting you on this medication and disappearing for five years. You’ll see me throughout this whole time. I’m here to help you through this. So let’s try it. Let’s see how you do. If it’s horrible, then okay, we have a data point and we can move on from there and figure out what’s right for you. But until we try it, we really don’t know.'”
Although some of these breast cancer treatments have been around for a very, very long time, Dr. Seidman says that the way the medical world manages side effects “has changed tremendously” and “[we] are better at managing them.”
Long-Term Treatment for Breast Cancer
As Hall and Dr. Seidman delve further into discussing long-term treatment for breast cancer, Dr. Seidman gives an overall approach on how to view the daunting process.
“There’s not just one umbrella of breast cancer. It’s many different diseases,” she explains. “And the most common type of breast cancer is hormone receptor-positive.”
Point blank, Dr. Seidman says “these medications are to eradicate micrometastatic disease.”
“So tiny bits of the cancer that could have escaped that we don’t see, we have no way of testing for, we have no way of knowing if they’re there,” she explains. “We just know that they can be there and if they can be there, then they can come back. So the treatments are for all of those little bits of the cancer, it’s to prevent them from getting any stimulation from any hormones so that they die, they starve out.”
“So the hormone therapies or anti-hormone therapies or endocrine therapies, anti-estrogen therapies, that would be continued for five years or 10 years. Sometimes seven-and-a-half, split the difference.”
What Are CDK4/5 Inhibitors?
An additional medication “that can be added to hormone therapy or endocrine therapy” is a CDK4/6 inhibitor, a targeted cell growth treatment that works along with the endocrine therapy in order to help it work better and for longer. So it goes about a different pathway.”
As Hong continues on these long-term medications for her treatment plan, the stage 2 survivor says she “values sleep so much more now for sure. But overall, I feel fine. I was healthy prior to my cancer diagnosis, very active, low BMI and all of that, and I still got cancer, so it’s not a one-shoe-fits-all.”
“But being on this, I just kind of put it in with my daily supplements as it’s a routine now,” she adds.
For Hong, she trusts science, and with statistics in front of her saying “this will reduce your recurrence by 35% — I’m like, that’s a great number and I’m going to take it … and I just know [taking these medications is] not forever.”
Advocating For Your Health
Another important element of tackling treatment plans with your medical team is speaking up, especially if you feel that your doctor is not listening to you. Not only is it potentially dangerous, but it can really cause a mistrust with the overall process, not to mention causing the patient potential confusion and feelings of hopelessness.
Survivor, fitness trainer and founder of Cancer Baddies support network, Amanda Butler, 35, says that “there’s no right answer.”
“This is your own journey and your own path, and you have to figure out what is the best option for you,” Butler shares. “So it’s just kind of like what works best for your lifestyle.”
Bottom line, treat the disease like it’s your job and learn as much as you can, the better-informed you are, the better decisions that you will make for you.
Active communication with your medical team is always a good idea.
Content independently created by SurvivorNet with support from Novartis Pharmaceuticals Corp.
Learn more about SurvivorNet's rigorous medical review process.
