Missing the correct diagnosis and its consequences.
Achalasia or esophageal cancer? Missing the correct diagnosis and its consequences.
It has been more than a year and a half since I lost my father to the effects of esophageal
cancer. The lack seems to be getting bigger by the day. At the same time, it also makes me angry when I think back to the journey my father has taken.
With my story, I want to provide more insight, which reduces the number of serious mistakes in diagnostics in the future, because experience stories
We do not have good experience with the provision of care at the Bernhoven hospital in Uden, in particular with Mr H., MDL
doctor. In our view, Mr H. acted carelessly and misdiagnosed my father, which later proved fatal.
My father was only diagnosed with metastatic esophageal cancer (November 2014), notabene in another hospital after one year. My father himself was there early when he experienced complaints and reported this to the doctor's assistant during a general check-up (November 2013). The trajectory of diagnostics has taken too long. My father first came to this MDL doctor in June 2014.
An endoscopy (gastroscopy) was performed, showing 'inflammation'.
However, this research was never repeated, even when my father indicated that the medication - which he received up to three times (!) for this inflammation - did not work.
It still hurts me a lot when I think back to the question Mr. H. my father asked: "Are you really okay, Mr. van der Sangen?"
My father did have swallowing and passage problems and the food also came back up more often (reflux).
A biopsy was never taken, not even at my father's insistence.
Only limited blood tests were carried out, which of course did not come to any time. Mr H. did nothing with the fact that my father had a diaphragm fracture, a previous inflammation in the duodenum for which biopsies were taken and he suffered from heartburn for years; risk factors for developing a so-called Barrett esophagus and thus an increased risk of esophageal cancer.
Mr. H. quickly concluded that it could not be a cancer and assumed a very rare condition called 'achalasia', even after it could not be completely hardened by specialists at the hospital in Nijmegen where my father underwent a motility
It was already October 2014!
Achalasia is a condition in which the sphincter between the esophagus and stomach cannot relax properly, causing a difficult passage of food and drink. For unclear reasons, no further research was carried out on other conditions. Mr. H. then referred my father to the AMC's centre of expertise in Amsterdam at the end of October 2014, where more specialised research into achalasia takes place. Within one month, the specialists there were able to make the correct diagnosis.
The AMC did carry out extensive blood tests and diagnostics and the specialists came to the conclusion that there was no question of achalasia at all, but of esophageal cancer with metastases to the lymph nodes in the abdominal cavity. In addition, his kidneys functioned poorly. There was no cure. The prognosis was poor. It was said from a few months to one year. After more than four months of treatment in Bernhoven, the AMC in Amsterdam was able to make the correct diagnosis within one month.
What an incredible blow this was for
us. I do not understand that this experienced doctor continued to assume this very rare and relatively innocuous condition and persisted in this, even when it turned out that it was actually not an achalasia. Why was cancer ruled out so quickly? This is cause of death number one! In my opinion, this should never have happened and cancer should have been part of differential diagnostics. The outlook would most likely have been much better if the diagnosis of 'esophageal cancer' had been diagnosed earlier.
Dozens of investigations, medicines and trips (travel expenses) would not have been
necessary. Don't forget our fears, insecurities and our grief throughout the journey. In January 2015, when the actual diagnosis was made, we requested a meeting with Mr H. as we stated that he had been negligent in his actions.
Shortly before, we had requested and studied the medical
records. During the conversation, H. indicated that he had acted according to 'protocol'. He also indicated that he would treat more patients with this condition. With that, the stocking was finished and we were able to go again. I have always doubted this statement; every year, only 100 Dutch people are diagnosed with this condition! Based on age (my father was 56 at the time), medical history and the nature of the symptoms (especially solid food was difficult i.t.t.t. achalasia, where both solid and liquid food passes laboriously) Mr H. should have considered the possibility of the presence of a carcinoma (De Vries, 2009)
(Source: Oncology for general practice). My father received palliative chemotherapy and radiation treatment at the Catharina Hospital in Eindhoven. My father died on July 24, 2015 and was only 57 years old. We (my mother, brother, twin sister and I) miss him terribly and he is also greatly missed by others.
With my story, I want to provide more insight, which reduces the number of serious errors in diagnostics in the
future. I recommend that doctors stick less convulsively to the prescribed protocols and the cost and not always rely on the classic symptoms; my father was a real sportsman (even before he fell ill in 2013 he climbed the Alpe d'Huez six times in the context of Alpe d'HuZes) and showed no worrying signs outside the aforementioned passage complaints for a long time. My father thought of achalasia quite quickly and cancer was ruled out very early (too early); a second viewing study would also cost money.
Now this course of action has cost much more money and also my father's
life. In addition, I hope to wake others up and make sure that more people share their stories. In this way, (future) patients have more opportunities! My message: be alert and do not stare blindly at conclusions of the so-called specialist ('The doctor will know'). They too sometimes get it "right" wrong!
SOURCE and with the permission of-Marleen van der Sange WWW.KANKER.NL Achalasia or esophageal cancer?
November 23, 2019 at 14.25 Marleen, first of all, a lot of strength for you, regarding protocols, I also suffer from passage complaints and have experienced esophageal spasm a few times, given that I have had colon cancer, fortunately no metastases, but after the second intestinal examination, you get if you have had cancer after a year a control examination and after=two years again had a laparoscopic examination with the conclusion: Mucous membrane biopsy sigmoid: tubulular adenoma with low-grade dysplasia, now I thought as layman 1 + 1=2 so was/I am curious whether the possibility existed or the low-grade dysplasia could cause esophageal cancer at a physically weak time, so an examination for esophageal stomach, when I was lying on the treatment table, the doctor asked me: have you ever had a bowel exam!?!?!?
, says her assistant gentleman has undergone a sigmoid resection, then as a rash :
Since times laborious passage high in esophagus. Swallowing is fine. No regurgitation from the stomach, no vomiting. Patient has a stable weight with a normal appetite.
No evidence for aealasia however, extensive tertiary contractions in the oesophagus with delayed passage to the stomach.
1. No macroscopic abnormalities in scopy, PA oesophagus follows
2. Mild redness stomach macroscopicly befitting mild antrumgastritis.
I biopsies gastricantrum: no abnormalities. No inflammatory characteristics of significance, no intestinal metaplasia, no helicobacter pylori.
II stomach antrum and corpussic membrane biopeds with phocial intestinal metaplasia. No dysplasia. Low chronic inflammation at most. No helicobacter pylori.
III biopsies esophagus: no inflammatory characteristics of significance. No image of eosinophilic oesophagitis.
In patients, there is esophageal dysmotility. There is no good treatment for this. In my opinion, underlying pathology is sufficiently excluded with these studies.
I see no reason for surveillance, but patient insists on this very persistently. I agreed with him to reconsider surveillance with you in three to five years. In my opinion, an X-esophagus is sufficient.
I didn't make a new appointment with patients.
Dysmotility esophagus without clue to underlying pathology. that person had quite a high opinion about himself, you want, but I do not give permission for this, now in
summary comes to me, after having read it to you like a Déjà vu about, sorry for the long text, but otherwise I did not know to explain, oh yes I also made an unofficial complaint because they do not bother to read through your "history", they did not even know that I had cancer.