Q&A: A Doctor’s Advice on Brain Fog and Stress
Talking through the side effects of chemotherapy is one thing. Living through those side effects is another.
Take chemo fog, for instance. This commonly experienced but little understood side effect can leave patients reaching for vocabulary words or feeling mentally hazy, both during and long after treatment.
Ruta Rao, MD — an oncologist at Chicago’s Rush University Medical Center and the head of Bad Mammaries founder Marissa Lanzito’s excellent care team — sat down with Marissa to talk about chemo fog. Below, she offers insight not only on chem fog but also on a coordinated approach to the stress and anxiety of cancer treatment.
Marissa Lanzito: Let’s start from the beginning. When you have a patient coming in, how do you prepare them for treatment and what comes after?
Ruta Rao, MD: Generally the patient meets with me first, and I’ll give the recommendation for chemotherapy, the names of the drugs, the general side effects. Then we always have them come back in to meet with our nurse practitioner for a whole hour for a chemotherapy teaching session. She makes a binder with the names of the drugs, the names of the antinausea medications, some of the most common side effects, how to manage those side effects and also some other resources that are available for patients.
Marissa: I remember going in for my chemo teaching. I just remember crying the whole hour, so I probably missed some parts of it. I don’t know if you can really take it all in when you’re going through it — especially the side effects. So how much do you tailor to different people? I’m Patty Panicker, and you probably could have known that from the minute you met me. How you do you tailor to different personalities and treatments?
Dr. Rao: There’s two answers to that. Our chemo teaching is really not tailored to an individual person, but it is definitely tailored to what their treatment regimen is. So if you’re getting chemo regimen A, your book would be different than the patient getting chemo regimen B.
I think the tailoring to the person sitting in front of you really comes when either the doctor or the nurse practitioner is meeting that person. Over time and practice, one of the things you learn is you really have to look at the person in front of you and ask, “What is that patient able to absorb at that time?” And know that everybody handles the physical and emotional stress of a breast cancer diagnosis very differently.
If you needed medication or counseling to help, that wouldn’t be a bad thing or a weakness. The stress of the diagnosis is very difficult.
Marissa: Let’s talk about chemo fog, because I don’t know that I was all that aware of it. I know that I had heard of it. But I wasn’t prepared to just stop mid-sentence and not be able to find vocabulary words. What do you tell patients to expect?
Dr. Rao: It is a legit condition that patients going through chemotherapy express. So I think that has to be acknowledged that you may feel that way during chemotherapy, and it’s not abnormal.
In the medical community, there just haven’t been a lot of studies done asking, “How do we try to prevent this?” We know some of the basic things. Actually, I read an interesting study that was done, I think last year, where it showed that women who exercised before they started chemotherapy did better, not only with the side effects of chemotherapy, but also with brain fog. So we definitely encourage our patients to exercise, to drink enough fluids, and to try to minimize their stress as much as possible. But specific, tested treatments are hard to come by.
Marissa: Is there any value in doing brain exercises?
Dr. Rao: Definitely, I think you can do brain exercises. There’s all sorts of apps, or I guess you could play Sudoku or now that new game Wordle that everybody’s playing. Things that stimulate the brain.
Marissa: Or you could try to do your third grade son’s math. That’s harder than you think.
Dr. Rao: The thing I keep coming back to, though, is really managing stress and anxiety. It’s different for everybody, but finding stress-management techniques like yoga or meditation can help some patients.
Marissa: So are you saying that the stress of treatment makes chemo fog worse? So it’s not just the medication?
Dr. Rao: It’s probably a mix of everything: the stress, the medications. And we have to remember, it’s also not just the two or three chemo drugs that a patient is getting. It’s the antinausea medication they’re probably getting, too.
Nausea is triggered by receptors in your brain, and antinausea medications work by activating or deactivating some of those receptors. That’s a good thing because our patients, for the most part, are not nauseated and are not throwing up. But it can also change the way your brain is working
Marissa: You mentioned the exercise study. Is there any relation between diet and chemo fog?
Dr. Rao: I haven’t seen anything published specifically on that — but I also think diet is very hard to control when someone’s going through chemotherapy. Your taste buds change. I’ve had lots of patients tell me things taste like cardboard or things taste metallic, and the favorite things that they used to eat, they don’t eat anymore. And sometimes they go back to something with more flavor or spice, and they get really nauseated from it. So I think during chemo, it’s really hard to ask a patient to stick to a certain diet, but certainly after they’re done with the chemo part of their breast cancer treatment, I think it’s important for them to meet with a nutritionist if they want to, or try to follow a healthy diet.
Certainly eating a well-balanced diet with minimally processed or not-at-all processed food, more fruits and vegetables, and less sugar is strongly advised.
Marissa: What part do the medications you take after treatment play? A lot of people say they experience brain fog with Tamoxifen, and you’re often on that for 10 years.
Dr. Rao: It probably contributes, because we know hormones are so important to a woman’s body and mind. Again, it’s something that some patients are more sensitive to than other patients. The physicians and the patients are in a tough position with these hormone therapies because they have been proven for probably 50 years to significantly reduce the risk of breast cancer recurrence and improve breast cancer survival. So as your doctors, we want you to be on these therapies, but we also know the side effects can be disabling for patients.
As the patient, you have to give yourself some grace. You have to tell yourself, “You know, I’m on these medications. I went through all of this, and I might not be exactly how I was two years ago.”
Marissa: I know. It’s just so hard when you jump back into life and work, and then you’re standing in front of a client stumbling over words. You don’t want to have to say, “Hey, listen, I’m on Tamoxifen” all the time.
Dr. Rao: And you know, it’s hard because you get back to looking great, like yourself. So people may look at you and think, “There’s nothing wrong with her.” It’s just all very individualized.
Marissa: So we have no idea how long brain fog lasts?
Dr. Rao: Not really. I know it’s hard. With the actual cancer, we can give you statistics. Even with the chemo regimen, we can tell you, “You’re going to get four treatments, every three weeks. So it would be nice to know when you could get out of this fog, but it’s really hard to give somebody that information.
Even when patients are done with chemo, we have to remember that there’s a lot of other things they’re going through. You brought up hormone therapy. And some patients continue on a drug called Herceptin. A lot of patients, especially if they had both breast removed and expanders put in, they have more plastic surgery. So they’re getting more anesthesia. They’re getting more pain meds with that. So even though the chemotherapy is done, there are other factors that might be leading to the brain fog.
Marissa: So it really is individualized, as you said. Is there anything you could suggest that would improve the experience of care after treatment finishes?
Dr. Rao: The first thing I’ll say is that the experience that you have described to me — feeling a little lost, with no plan — is accurate. And it’s been described in a lot of the breast cancer survivorship literature.
Patients go through this regimen, and then all of a sudden they see their doctor one time and hear, “We’ll see you back in three months.” And the patients think, “Well wait, I used to come every other week. And somebody was looking at me and checking my labs. What am I supposed to do now?”
The time between diagnosis and starting treatment is a time of high anxiety. But I’d say this is probably the second most high anxiety period in the breast cancer journey, when you’re done with active treatment, especially if you’re having bad side effects.
So I think finding ways to manage their stress and anxiety — really addressing that is important. A lot of people don’t want to address that or maybe culturally don’t feel comfortable addressing that. But I think it’s really important to acknowledge that that’s a big part of what people go through, and look for ways to do something about it.
