Dr. Google is not your friend

We suffer more often in imagination than in reality

(Dear friends, today’s words were inspired by a text I wrote right after my diagnosis, and I hope they will be of use to someone who is thinking about or going through a scary life change. Had I known these things from the start, maybe I could have spared some heartache.)

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I like to prepare for doctor's appointments. Don’t laugh, but there are so many things going on that I keep a list of appointments where I write what I need to talk about with each doctor. The last time I didn’t do this, I forgot to tell my cardiologist that my blood pressure was up and I had changed meds.

So you can imagine how prepared I was for the first appointment with my oncologist about the diagnosis of metastatic breast cancer: I had done extensive research and I had an organised list of questions. 

My «research» was basically a lot of googling.

On the phone, the oncologist had mentioned a possible medication, reassuring me that it had fewer side effects than chemotherapy. I went into a rabbit hole when I googled its name.  In those early days, researching side effects became an obsession (and those days, between the first phone call and the first appointment, were almost two months, since I had to repeat the bone biopsy).

Rationally, I knew that, without more information, side effects were just words: nausea, diarrhoea, fatigue, neutropenia/leukopenia (low white blood cell count), anaemia (low red blood cell count), low platelet count, liver toxicity, alopecia (hair loss), and prolonged QT interval (increased interval between the heart contracting and relaxing).

In the middle of this obsession, I found the results of the MONALEESA clinical trials (for cyclin-dependent kinase 4/6 inhibitor), and I dove right in. 

The articles listed the most common and the severe/life-threatening adverse events observed in the clinical trials. Neutropenia, and a weak immune system that could lead to infections, was the most common and serious. More than 20% had nausea, fatigue, diarrhoea, alopecia, leukopenia, vomiting, arthralgia, constipation, headaches, and hot flashes.

I had so many questions, so much fear. I knew that if the medication worked, I could be taking it for many years, and I wondered what that life would be like. Was I going to be sick all the time, unable to do anything? Even with the non life threatening effects, I wondered how they were going to impact my life. Was I going to lose my hair? Would I be unable to work, unable to go on holiday? 

I was lucky to have a good friend who is a doctor and listened to my rant and very gently reminded me that many times the patients that are part of clinical trials are in different stages of the disease, and many had previous treatments that didn’t work. I knew that, didn't I? Maybe, but her words reassured me and made me take a step back and understand that I was stressing about words in medical articles that could not relate to my condition.

So I waited, and I made my list of questions about side effects and how to manage them. And when I finally talked face to face with the doctor, many of my fears dissipated. She talked about what would happen, the treatment, and the most common side effects (many of them from menopause). She was patient and kind. She gave me prescriptions for nausea and diarrhoea, which I bought - and those boxes remain unopened to this day, because the few times it happened, I was able to take care of myself just with rest and home remedies. She said to live my normal life, and that became my compass for all the doubts that came after.

Almost one year later, I look back at my fears and I know they are still there, hiding in the dark, vigilant. Just now, googling the medical articles to rewrite and edit this story, I find new things, and it scares me. A  study from June 2023 says, «Our real-world data suggest that cardiovascular adverse events, especially cardiomyopathy and atrial fibrillation, are more common among patients treated with cyclin-dependent kinase 4/6 inhibitors than previously described in safety and efficacy studies and are not just limited to QT prolongation».  I think this is probably not good news for people, like me, who had paroxysmal atrial fibrillation and had an ablation. Then I breathe again and say to myself that this specific heart problem is very common and is fixable with a simple procedure.

I see this disquiet many times in real life and in online forums, where people who were just diagnosed are trying to grasp everything that is happening, looking for answers. And not only the newly-diagnosed: we fear new symptoms, new pains, and any time the doctor wants to change our treatment. 

In the words of Seneca, «We suffer more often in imagination than in reality». 

It is easy to fall down the «what will happen» rabbit hole, but every time I do it I am more conscious of the process and (if I’m successful) it takes a little less time to come back up again.

What is the process? I still use Dr. Google, but I list my worries and worst-case scenarios and go through them with my doctor. If there are still concerns, I try to have a plan to prevent and deal with the possible outcomes.

Like everything in life, it takes practice, and it helps to have people who are there for you and acknowledge your fears in a drama-free way. It also helps to put it in words: writing about it makes it very conscious and deliberate.

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(And if you stayed until the end, I let you know this bit of trivia: sometimes, after I choose a title for my text, I google it to see if it appears associated with something weird. This time I wrote my text and chose my title, and when I googled it, the result was so mind-blowing that I have to share it with you: I found a text with the same title and with a story very similar to mine. This goes to show there are more of us out there, googling away.)