The more research and testing is carried out, the more often medicine finds something unusual. Anja Reinbothe-Occhipinti is fed up with findings that just drive people crazy.
It all started with my last gynecologist in January 2020. At the time, I was just before my mid-40s and living in the Brandenburg countryside. Women over 35 can – and should – get tested for human papillomaviruses (HPV) every three years. In the worst case, but very rarely, the pathogens lead to cervical cancer. That year, my smear test was positive for the first time. That didn’t mean anything, the doctor reassured me on the phone: “We’ll test again in twelve months.” Nothing should happen for that long, I asked, alarmed? Most of these infections heal on their own within one to two years, was the answer. Only around ten percent of all HPV infections remain longer and can change tissue. I relaxed.
Panic after the second finding
The following year, my smear test was positive again. The infection was classified as “Class 1”. Wow, there was a result! The gynecologist referred me to a specialist in Berlin. In the weeks leading up to that point, I kept getting panicky, which I couldn’t shake off, like fresh chewing gum on my shoe. Was cancer growing inside me? What would become of my husband and my two children? I had just started a new job.
I ended up sitting like a heap of misery in front of the specialist gynecologist in his Kreuzberg practice. The experienced man studied my data and asked: “Why are you here? There’s no need for that with your values.” Oh, really? I listened up. After he examined me with a colposcope, a stereo magnifying glass, he finally gave the all-clear: “The proportion of viruses in your body is really so small that it will balance itself out.”
The entire burden on my soul fell away like a thick layer of ice during a thaw. My gynecologist had unnecessarily frightened me with her preliminary diagnosis. And, as my research has shown, I’m not the only one who feels this way.
The reasons for useless investigations
“Our health system provides a number of incentives that lead to many examinations that are actually of no use to the patient,” explains Professor Dr. Verena Vogt, who researches over-provision in the health care system at Jena University Hospital. “Technical services are better remunerated than having a detailed conversation with the patient.” In everyday practice, it is less effort to schedule examinations and treatments, i.e. to do something – and many people expect exactly that from medicine – rather than explaining that doing nothing for the time being is also an option. “At the same time, doctors naturally want to protect themselves against legal consequences for fear of overlooking something.”
But playing it safe is only one motivation. A qualitative survey commissioned by the Bertelsmann Foundation found that doctors carry out examinations and treatments that are actually not necessary because they see them as a gesture of affection and care. Patients would also perceive them as such and, if they have statutory insurance, would be more likely to fear under-provision than over-provision. In addition, other studies have shown that doctors themselves are often unable to correctly classify or communicate the benefits and risks of screening measures. The Kreuzberg specialist took the time that such a conversation requires and he also knew the crucial figures.
“Around 80 percent of all women and men have had this virus at some point in their lives. If you take part in screening regularly, there is a high probability that every woman will have this result,” says scientist Verena Vogt. In my case, I left the practice feeling reassured, and when I had my smear test the following year, my values had actually returned to normal.
But not “just” nosebleeds
When we moved back to the city from the country last summer, my eldest son, 13, suddenly started having severe nosebleeds every day. The general practitioner (I couldn’t find a pediatrician with free capacity quickly) referred us to the laboratory. Three tubes had to be filled, which took time and was painful. “You’ll be over it soon,” I consoled my son, but I was wrong.
A week later, the doctor told us that there was no underlying cause for the frequent nosebleeds. We relaxed briefly, but then he added a “but”: the red blood cells were balanced, but the white ones, which protect against pathogens and tumor cells, were significantly below the norm. “I am not a specialist for the young target group and cannot tell you exactly what that means.” The ground opened up beneath me. “It could be glandular fever,” said the doctor. Or something worse, it flashed through my mind. My son’s biological father had bone cancer at the age of 30. Please no! My child is only 13! “I’ll send you back to the lab. We need comparison values.”
That meant waiting another two weeks. I imagined disastrous scenarios almost 24/7 while I desperately searched for a pediatrician and finally found one. When the results came back, we were relieved: “The white blood cell count has returned to normal.” Undiagnosed infections were the cause. I could have cried with happiness.
Mammography every 2 years – necessary or unnecessary?
And then came the check-up appointment with my new gynecologist. A brief, irritated look as she felt my breast. She had felt something there, next to my right nipple. A lump? My heart was racing. Maybe just hardened tissue, she reassured me. She couldn’t see anything worrying on the ultrasound. “I’m still sending you for a mammogram. You should go there when you’re 50 anyway.” OK, but I just turned 48.
The mammography screening, to which women over 50 are invited every two years, is an example of the balancing act between security and uncertainty. “The benefit is controversial due to the potential for overdiagnosis,” says scientist Verena Vogt. The aim is to detect the disease at a very early stage and to take action against it. I think that’s a good thing, and one reason why we are living longer and longer these days. Of course, it would be desirable if there were no so-called false positive findings, but they cannot be completely avoided. Dr. Verena Vogt also confirms this. But my case is different: Is it really necessary to be frightened and terrified when – as was the case with me – nothing was visible on the ultrasound, and then to celebrate life anew every time the all-clear is given? What can I do specifically to avoid driving myself crazy?
“To help patients better assess whether further tests are really necessary, the American initiative ‘Choosing Wisely’ has issued a recommendation to ask the doctor five questions,” I learn from Verena Vogt. “Do I really need this further treatment? How much does it cost? What are the risks? Are there simpler options? What happens if I do nothing?”
The thought carousel begins to turn
I’ll remember these questions and always address them in the future, but I already have the mammogram appointment. It’s hanging over me like the sword of Damocles. My thoughts start racing again: Am I the first woman in my family with cancer? My children need me! What would happen if I were no longer here? My thoughts are spinning.
No matter how much Gianni, my husband, tries to calm me down, I find it hard to get my fear under control. Who helps me instead? My grandma. She calls me in tears one day after my appointment with the gynecologist, and I’m already crying my head off. She understands that the lump in my breast scares me and tells me about my aunt, who had a similar diagnosis years ago: “She had to go to the doctor’s office again and again. And then the lump suddenly disappeared.”
keep Calm
Is it that simple? My tears dry up. Grandma says goodbye. She turned 100 last June. How did she manage it? Certainly not by constantly letting herself get crazy, but rather through calmness, strength, confidence and common sense. We should use that more often – and reduce our expectation that more is always better.
It also helps to include the so-called pre-test probability. “This refers to the probability that the disease is present before I carry out a diagnostic test,” explains Verena Vogt. In my case, this means: Since the ultrasound showed no abnormalities and I have no risk factors for cancer, a tumor in my breast is so unlikely that I would not have needed to undergo any additional tests, says the expert.
My mammogram showed exactly that: nothing. I certainly won’t let the next “It could be…” diagnosis unsettle me.
Decide wisely
The US-based campaign “Choosing Wisely” recommends asking these questions:
Do I really need this examination?
What happens if I do nothing?
What are the risks, side effects?
Are there alternatives to the examination that are simpler and safer?
How much does the examination cost and do I have to pay for it myself?