This page is meant for experiences and research in the area of metastases (uitzaaiingen). After looking at Dutch sites such as KWF and the Borstkankervereningen (association for breast cancer) I was disappointed with the information available for patients who cannot be cured. As accurate as the other information seems to be, so little and insufficient is the information for patients such as myself. There are pages on where the breast cancer can spread (bones, liver, lungs) and what happens is described briefly. Most discouraging of all is the simple statement on most sites that once you have metastases, you cannot be cured and all treatments are palliative, aimed at prolonging life. However true, this leaves little room for hope. I am a great believer in innovation, and in this area progress is made. I believe more focus on new research and new treatments is needed in The Netherlands, and should be made accessible to patients. My role model in this area is my late friend and mentor Olf Kinkhorst, who died in 2009 of a rare vorm of jawbone cancer. He did not rest until he had tried everything and was very open about his search and results. He went to a clinic in London where they applied a new form of laser therapy to remove metastates in the brain. He had started a patient association for more patient control over his/her own treatments, instead of being led through well defined protocols which leave little room for individual choice, he believed patients in this fase should have more say in the treatments and these should be made available. After all, why can’t we get the treatments that patients abroad can follow?
Useful sites
The FDA approved clinical trials for SentiMag in April 2013. SentiMag is a device that detects the sentinel node prior to surgery using nano particles in combination with magnetic sensors whereas the current method uses radioactive tracers. This technology is already used in Europe (also in Holland).
A new therapy –Trastuzumab emtansine (T-DM1) or Kadcyla, produced by Immunogen – is on the market for metastasized Her2 positive breast cancer.
The (dutch) UMC Hospital site on cancer, specifically this section on liver metastases was useful for me.
The Memorial Sloan Kettering Hospital in New York has a very extensive English site on all sorts of cancers and describes all possible treatments they offer. They do a lot of research and provide a ton of useful information, also on new treatments. Best of all is their attitude: yes we can help you, no matter what. They are very patient oriented in the way the texts are written and the support options they offer. For instance, they have insurance specialists who help you with the finances. Also, they offer a second opinion on your medical file or give you a quote on what a private examination by a specialist costs. It does cost a lot, but may make the difference between life and death for many patients.
Sheila Ghosh - blog 