My experience with cancer misdiagnosis

Last year, I complained to my primary care physician about a patch of skin that concerned me on my upper lip. I previously explained the concern to his dermatologist on two different visits only to be given a cream and told that “the dry skin will clear up”.

The primary care doctor expressed shock that a consultant dermatologist would miss such an obvious red flag on a patient’s skin and immediately warned that it looked like a mild but still worrisome cancer and scheduled me for immediate surgery at Nairobi Hospital.

Then in 2019 seeking a regular dermatology check-up, still bitter from the malpractice of the initial doctor, I chose a different dermatologist. The second dermatologist recommended the second type of cream for a different patch of dry skin on the scalp and face.

Feeling uneasy at the similarity between the two medical visits in Nairobi, I sought a second opinion in the US from a famous dermatology surgeon whose institution’s president sits on the USIU-A Board of Trustees.

I brought the cream prescribed in Nairobi and showed the American doctor my scalp. The dermatologist pronounced emphatically that I had an aggressive deadly cancer and immediately took a biopsy for confirmation under the microscope. I was told that the cream prescribed to me in Nairobi would have exacerbated the cancer and I would have been at Stage 4 in six months and likely dead in two years or less. I returned to Kenya immediately and had emergency surgery at the Aga Khan University Hospital.

Thankfully, surgery in Nairobi saved my life on both occasions, but they were only necessary because of earlier incompetence by non-hospital consultant doctors.

In Kenya, we hear of major malpractice such as the brain surgery conducted on the wrong patient last year, or the wrong leg amputated, among others. But we do not hear much about glaring medical misdiagnosis.

Legal scholar Kifaya Ibrahim finds the Kenyan legal system not yet optimal for medical malpractice claims. Nation Media investigative journalists Walter Menya and Angela Oketch found that between May 2018 and February 2019, four leading Kenyan hospitals were directed to pay Sh106 million to settle medical negligence claims.

While the sum seems high, most courts awarded small awards of under Sh3 million for major pain and damage.

In the weeks since my emergency surgery, I have conferred with medical executives and faculty in the United States, United Kingdom, and Kenya. American doctors state that they fear malpractice lawsuits and take extra time and spend copious amounts of hours reading the latest medical research to make sure that they are not later sued.

Drive through the southern portion of the American southeast and one notices a shockingly high proportion of roadway billboards advertising lawyers offering to sue for medical or insurance malpractice. American term such legal professionals derogatorily as “ambulance chasers”.

British doctors exclaimed fear of strict regulations and oversight by the National Health Service (NHS).

Kenyan doctors interviewed, those who have worked locally and abroad, cite tremendous freedom working in Kenya with low risk of lawsuits or oversight.

The freedom allows them to respond quickly to patient needs. But a leading judicial appointee interviewed, who desired to remain anonymous for this article, claims that the Judiciary could process more medical malpractice claims as a way to increase Kenya medical quality but needs doctors to testify against other doctors to prove incompetence in cases.

Since the medical community is as yet unaccustomed to such judicial oversight, they decide to stick together and often do not testify against one another.

Personally, I still have faith in the Kenya medical establishment. The Aga Khan University alone retains full-time faculty trained at Harvard, Johns Hopkins, and Cambridge, as an example.

My American doctors were stunned, showing perhaps their own bias, when after my diagnosis this year, I flew the same day back home to Kenya to get treatment. Over the past 20 years, the Nairobi Hospital, Avenue Hospital, and Aga Khan University Hospital have all saved my life on different occasions. But in talking to various industry executives, I have been given some tips to getting the best care that Kenya has to offer for special less common illnesses.

First, eliminate the conflict of interest that a medical doctor has between treating you holistically and making money off of you.

Continuing with the medical field of dermatology as an example, in the United States, most skin cancer surgeries occur right in the doctor’s office with quick procedures under local anaesthesia at affordable prices.

Here in Kenya, most dermatologists demand full hospital admission and often general anaesthesia for the exact same simple procedures. Why? The costs charged to the patient become dramatically higher once admitted to the hospital. So, find consultant doctors not motivated by how much you spend on treatment.

Seek out teaching hospitals whose doctors do not make more money from you based on their diagnosis.

Then at the teaching or university hospital, ask for doctors in this order: first, choose full-time university medical faculty who are only allowed to work for the hospital and not allowed to advertise elsewhere.

Second, part-time university medical faculty who retain their practices as well as teach at the hospital. Then, only third, external consultants who hold admission privileges in the teaching hospital.

Second, do not be afraid to research on Google Scholar. Protocols for many diseases are published for free by the National Institutes of Health. It is OK to question and dialogue with your doctors and show them the latest research. But be wary not to self-diagnose using Google based on your symptoms.

Only research on the illness once you have been diagnosed by a qualified physician. If the treatment prescribed to you cannot be found in a medical research journal, then seriously question its legitimacy.

Third, when faced with a major illness, if time permits, always seek out a second or third opinion.

Sometimes besides the profit motive, a surgeon may want to test out a new technique and use you like a proverbial research guinea pig.

Make sure the treatment recommended to you has broad medical consensus before you proceed. Doctors here in Kenya and around the world are happy to provide you with these second opinions.