London, UK: A specialist cancer nurse will tell Teenage Cancer Trust's Fifth International Conference on Teenage and Young Adult Cancer Medicine today (Monday) how a young man waited for ten months before doctors correctly diagnosed him as suffering from Hodgkin lymphoma, after he was delayed by the referral pathway and hospital system.
Ms Sam Smith, a teenage and young adult (TYA) Nurse Consultant at the Teenage Cancer Trust Unit at the Christie Hospital (Manchester, UK), said: "The 20-year-old visited his GP with a painless swelling in the neck; a classic symptom of Hodgkin lymphoma. The GP did the right thing and referred him straight away for an ultrasound, which showed abnormalities.
"However, the problems started with the referral pathway. His GP referred him to an ear, nose and throat team at a district general hospital and not to a cancer specialist, which is a common pathway unless cancer has already been diagnosed. The tests that were carried out would not have been able to identify a malignancy. He was given the results a month later and clearly told it was not a cancer. His symptoms worsened and he was referred for a scan, which did not take place for a further two months. The scan was abnormal and he was then referred to another general hospital for a second opinion. This took a further month for an appointment and eventually an open biopsy of the neck lump was performed which is the only way to diagnose Hodgkin lymphoma. The results of the biopsy were further delayed due to the Christmas and New Year period. He was eventually given the diagnosis of Hodgkin lymphoma in January this year, ten months after the first onset of his symptoms.
"His mother heard about our unit and rang me and asked if his care could be transferred to the Teenage Cancer Trust Unit. When he came to our unit he had not had necessary staging scans performed and so there was a further two-week delay while we carried out the pre-treatment tests and staging. The whole process meant that he was not correctly diagnosed for more than ten months; much of this delay was due to professional delay within our current hospital system. He is just coming towards the end of his treatment now.
"It's a worrying story, but unfortunately not a rare one."
The young man who is now 21 (and wishes to remain anonymous) said that he first noticed the lump at the end of March last year and he went to his GP in early July. Initially he thought it was a muscle tear from playing rugby, but when it didn't go away he went to his doctor. "During the following six months until I started treatment at the Christie, the lump grew from 2.5 x 2.5 cms to 15 x 13 cms. But apart from that, I didn't have any other symptoms, although just as I started at the Christie I began to get night sweats."
The patient, who is team manager in a bank's customer services department, will be finishing his chemotherapy treatment on 30 June and has been told that there's no sign of any cancer remaining. However, he remains concerned about the way he was treated before he finally received the correct diagnosis.
"When I was referred to the first hospital I was told on two separate occasions that there was definitely no cancer. They had identified it as either a lipoma, a non-malignant tumour of the fat cells, or a hernia. But I have since seen in letters that they sent to the second hospital that actually they had no idea what it was."
As he had been told it wasn't cancer, he didn't worry about it at that stage, but once he was given a correct diagnosis, he wanted to start treatment as quickly as possible. "I was told that Hodgkin lymphoma was one of the easiest forms of cancer to cure and the treatment is very successful. I was anxious to get started and was frustrated because while all these delays were going on I wasn't being treated. I was very relieved when I got the first dose of chemotherapy into me."
The Teenage Cancer Trust unit also ensured that he was given information about sperm banking before the chemotherapy started in case the treatment damaged his sperm irreparably and made him infertile. "The Christie sorted all that out for me," he said. "They reckon I have about a 70% chance of everything being normal, but the banked sperm is there in case it's not. I just have to have a fertility test at a later date after my treatment has stopped."
Ms Smith said: "We don't know whether delays make a difference to the outcome of these patients, as we don't have the evidence yet that their outcome would be better had they been treated promptly. But it underlines the need for making referral pathways less complicated and to have specific pathways mapped out for suspected cancer."
In 2005 NICE (the National Institute for Health and Clinical Excellence) issued guidance on children and young people with cancer. Among the recommendations, NICE said that cancer networks should identify their main centres, such as hospitals or clinics, for treating different types of cancer in children and young people, and that they should ensure that the ways children and young people were referred to treatment centres were clear.
Ms Smith said: "Hopefully, proper implementation of the guidance will lead to much clearer referral pathways across the country and the classic symptoms in the key TYA cancers must be recognised much earlier in order for young people to receive a more timely diagnosis of cancer."
Note: please see the press release about Prof Tim Eden and Ms Sam Smith's research on delays faced by young patients.