Carcinoid Cancer - Multiple locations : misdiagnosed with triple negative breast cancer

Hi, It seems you’ve been through a lot. The life expectancy of carcinoids is dependent on metastatic sites (usually taken as the liver involvement). Five year survival estimates are in the range of 30-40% for patients with a primary site in the appendix. There seems to be better odds of surviving among women than men. One of the initial steps would be to estimate chances of resection. In your case, if you are not a candidate (due to multiple sites of involvement), one of the decisions to make is when to start treatment. If you have any symptoms (like watery diarrhea) or if the tumor burden is deemed significant on the Octreotide scan – you may be offered treatment with sandostatin. The treatment generally stabilizes the disease and in doing so offers prolongation of survival. In a subset of patients, it may shrink the carcinoids enough to allow subsequent surgical removal. If the short acting sandostatin is tolerated – a longer acting drug is recommended. Other options would be radiofrequency ablation (depending on size, this may be used for the liver, accessibility of the thigh carcinoid and the spine may not allow its use here) and interferon. There are some options with using radio-labelled somatostatin analogues. This allows delivery of radiation as therapy. Some studies report an effect lasting 36 months (from start of therapy). This may only be available in the Erasmus Medical Center in Rotterdam http://www.prrt.nl/index.php?lang=en or in the European Institute of Oncology in Milan. I can only give you names of doctors who have research in carcinoids. There is Dr Oberg from Uppsala, Sweden; Dr. Kwekkeboom from Rotterdam, Netherlands, Dr. Faiss from Berlin, Germany. Among the things you need to discuss are: whether a cardiac evaluation has been done to rule out heart involvement, the chances of removing the sites currently involved, whether the surgery would be possible if there is a reduction in size after treatment, the experience of the institution with certain modalities such as radiofrequency ablation, the estimated gains with individual therapeutic options and their side-effects.

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