It is a fundamental right.
When we are faced with a diagnosis of cancer, we wonder about the options that have been chosen to treat it, or we want to ensure that the necessary analyzes have been carried out and the results correctly interpreted, asking for a second opinion is completely legitimate (read below). And even understandable, given a serious illness.
Although she regrets it today, Sandrine, a 57-year-old from the Côte d’Azur, didn’t even think about it when she was told that she was suffering from lung cancer. “We are in a state of astonishment, all that matters at that moment is to be cared for.”
It was by chance that his illness was discovered in June 2017. “I had asthma, and my doctor ordered a follow-up lung scan.”
The images leave little doubt, everything happens very quickly. In the afternoon, she was seen by a pulmonologist, and immediately, she performed a PET scan. It needs to be operated on.
“I was offered the hospital or a private clinic, I chose the second option.” In July of the same year, she underwent a first operation, during which half of her left lung was removed, and a month later, “one third of the right lung.”
She will then have to undergo long months of chemotherapy. “I took it very badly, I feared dying…”
During the years that follow, Sandrine will be monitored regularly by her surgeon, and will carry out scans at regular intervals. “Sometimes he told me he saw things, other times he didn’t, but nothing more… I didn’t know what to think…”
“I gathered a lot of information about my tumor myself”
And then, last October, while Sandrine thought the disease was behind her, a final scan revealed two new nodules.
“The following month, I had surgery, the surgeon removed one and we scheduled a new exam in February to assess whether the second had progressed before making the decision to remove it.”
The doctors recommend new chemotherapy, but Sandrine cannot agree to it, traumatized by the experience of the first.
And then, above all, she is totally taken aback by her surgeon’s response when she asks him about her illness: “Why do I have all these lumps?” “I don’t know, I don’t have any other cases like you, you’re the first…”
Sandrine has a rare cancer: an atypical carcinoid tumor (neuroendocrine) of the lung. “His ‘I don’t know’ was a real shock; while I had refused to do it until then, knowing that it wasn’t right, I launched into frantic research on the Internet. J I gathered a lot of information about my tumor, I cross-referenced it, and that’s how I “came across” an expert center in my type of cancer, at the Paoli-Calmette Institute in Marseille, the coordinating center of the Renaten network (National Network for the Management of Neuroendocrine Tumors).
“Chemotherapy was useless”
Without believing it, Sandrine and her husband, Jean-Paul, always at her side during this difficult journey, sent a message to the service explaining the situation. “They responded to me within 48 hours giving me an appointment just as quickly.”
When Sandrine is received by the Marseille specialist, she expects to be lectured. “I thought she was going to blame me for finding information on the Internet.”
In reality, it is the doctor’s anger that she will confront, but this anger is triggered by a completely different motive: “I don’t understand why your file didn’t reach me sooner! We didn’t take into account the characteristics of your illness, we treated it like we treat typical lung cancer, when you have a rare tumor which falls under a particular protocol. The chemotherapy that you underwent, in particular, was completely useless.
A feeling of “omnipotence”
Since this discovery, Sandrine has been followed in Marseille, she will soon benefit from a special examination, intended to check that the disease has not spread to the liver and bones.
If worry torments Sandrine and her husband, they are also very angry. “We do not question the quality of surgical interventions and follow-up, but when we do not know, and this was the case with local doctors, we find out and refer the patient to the expert center.” They denounce “this feeling of omnipotence which characterizes certain professionals”.
Will the lack of appropriate care have compromised Sandrine’s chances of overcoming the disease? She doesn’t know, she may never have an answer.
But, with this testimony, it is above all other patients faced with a situation similar to hers that she wants to raise awareness. “Patients must benefit from the best expertise. And for those who, like me, present a rare neuroendocrine tumor, it is in Marseille that it is found.”
It is also an opportunity to recall that recourse to a second opinion in the event of a complex medical situation is still not anchored in our morals, even if it has been clearly enshrined in the law for 20 years.
2nd opinion: what the law says
Several articles of the Public Health Code make explicit the right to seek a second opinion in France, in particular article R4127-60: “The doctor must propose the consultation of a colleague as soon as circumstances require it or accept that which is requested by the patient or his entourage. He must respect the choice of the patient and, unless there is a serious objection, address him or appeal to any consultant in a regular practice situation. […] At the end of the consultation, the consultant informs the attending physician in writing of his findings, conclusions and possible prescriptions by notifying the patient.
