Ourania's Story- Carcinoid Tumour
My wife's name is Ourania. We live in Toronto. She was diagnosed with carcinoid (which was ignored by the surgeon) after removal of a teratoma in the sacral pelvic region in 1993. She was followed up for only three years with physical exams, without CT or Octreoscans. She was told that she was cured. She was diagnosed in the spring of 2005 with recurrence in the pelvis and metastases in low volume and size in the liver and minor lymph node involvement. Her prognosis varied from doctor to doctor from two years to indefinite. Her tumours are non-secreting. She was excluded from surgery and any treatments because of the location of primary and the multilobar nature of the metastases. Three lesions in the liver were in the 1cm range. Six months after diagnosis she was referred to London and in January of 2006 she started the Indium 111 + chemo treatment as the tumour growth began to accelerate both in the liver and pelvis. The treatment proved difficult because it was hard to have liaison between the Treatment Centre, the local hospital and the family doctor in dealing with day to day issues. In the end the treatment was not successful. She underwent Interferon A treatment for three months without response, weight loss and disease progression.
We referred ourselves in March of 2007, to London, U.K., and to a centre in Rotterdam in the Netherlands. Both centres offered treatment, Y90 in 12 weeks in London, U.K., and LU 177 in two weeks (April 12, 2007) in Rotterdam. After 3 cycles of the treatment Ourania is better, has gained 10 kilos, and the Scintigraphy and initial CT scans show tumour response, up to 1cm diameter reduction in the pelvic tumour. We will explore cytoreductive treatments and if they are not offered here in Canada because of protocol or lack of treatment options, we will explore opportunities in the US or in Europe for surgery and /or RFA, MICT, LITT.
For instance our Radio Frequency Ablation equipment can treat tumours up to 4cm whereas in the US and Europe the new generation treats tumours in the 7 cm range.
The reason I outline this clinical history is simple. We need better doctor education; clear treatment protocols and referral systems in the hospitals; improved co-operation between doctors and specialists, and between specialists in the field; and a referral system to specialists here in Canada and abroad as the case may require; more protocol options that are in tune with treatment protocol in the U.S. and Europe, early and more aggressive, and an improvement on diagnostic equipment and treatments such as PRRT, HACE, RFA, LITT, and the MICT in which we lag behind the Europeans. We need more programmes such as the one in London, which have the potential to offer multidisciplinary team treatment provided that there are clear guidelines, early referral protocols, and methods of disease management on a co-operative basis between the Treatment Centre, local hospital and Family Practitioner and Community Care.
There is no excuse for patients in Toronto to wait six months to a year for an Octreoscan or a referral, and for our diagnostic equipment and treatments to be one to two generations behind the Europeans.
December 2007 by Frank on behalf of wife Ourania
Carcinoid Tumour