About consultations • Glioma - Center Foundation
Being foreigners, we will wish to consult our case with teams of doctors working in clinics abroad; in practical terms, we shall be asking for the so-called “second opinion”, and this is the phrase to use when looking for websites of foreign medical centers. On homepages of large clinics one can find particular tabs (for instance, “International patients”), which bring relative information. A “second opinion” can also be applied for in the patient’s native country; then we simply ask for an additional consultation. Consultations may concern either individual stages of treatment (e.g. only neurological consultation required because of pending operation), or general treatment procedures.
Some practical examples:
HEIDELBERG UNVIERSITY HOSPITAL
Consultations may concern both children and adult patients diagnosed with tumors. Correspondence should be conducted in English or German; documentation attached should not be older than three months and in general it should include all valid test results (MRI, histopathology, morphology, chemoradiation records). The documents will not be returned, and therefore it is photocopies that should be sent, via snail mail or e-mail. Basing upon them, the hospital will prepare, free of charge, a proposal concerning treatment procedures (if payment is required, the clinic should provide relevant information). On can accept or reject the proposal; asking for opinion is not in itself tantamount the patient’s commitment to undergo treatment.
MEMORIAL SLOAN KETTERING CANCER CENTER (MSKCC)
MSKCC is an American hospital which employs world-class specialists, who working both with children and with adult patients. The staff is engaged in numerous studies, it takes top ranking positions and is generally considered to be one of the best oncological clinics in the world. It is there that many patients unable to find help in other places are cured – for instance children with retinoblastoma. Like in most American hospitals, consultations for foreign patients are not free of charge. Depending on the institution, payment can amount to two or three thousand dollars. If treatment in an American hospital was to be undertaken (and there is no insurance for the US), the cost would be immense, which has to be taken into consideration. Each medical procedure – an MRI, tomography etc. – will be much more expensive in the United States than in Europe.
In order to reduce costs of consultation and treatment the patient can be qualified to participate in a particular clinical trial. However, it should be remembered that the institution which sponsors the study will cover costs of the drug being tested, but will not pay for the stay in the hospital or for additional tests and examinations, etc. Foreign patients who are not insured have to pay a deposit prior to undergoing medical procedures; after the trial the accounts are settled by the hospital.
Patients who want to obtain payable opinion should send an application form, filled in English, to Bobst International Center
Patients who wish to participate in a particular clinical trial should apply directly to its coordinators; e-mail addresses can be found in trial descriptions.
Consultations for children
MSKCC offers pediatric consultations there are three possibilities that might be relevant for individual cases:
Precise neurosurgical consultation for a child patient: University Hospital of Tubingen. The staff includes doctor Martin Schumann, a renowned neurosurgeon, who can determine, for instance, whether the tumor is subject to surgical resection. The registration form can be found:
Genetic tests – GOSH (Great Ormond Street Hospital) in London. The clinic provides “second opinions” (sample cost: entering IMRI results – 250 GBP; medical opinion – 300 GBP); prior to consultations reference number must be obtained, following written application. “Online referral form” to be filled and sent can be found
In 2017 the charge was c. 700 GBP, for tests with a limited number of mutations. Tests involving a wide genetic spectrum may be made in the Heildelberg clinic: http://pediatric-neurooncology.dkfz.de/index. php/en /diagnostics/pediatric-targeted-therapy. More information at :
The code number of the study is PTT2.0, and molecular analysis is carried out by means of three different technologies. The charge depends on whether the material is provided by the hospital and the doctor in charge (c. €3000) or sent individually by the child’s parents (c. €5000).
DIPG-TAC: DIPG Centre of Expertise in Zurich http://www.dipgtac.co and www.dipgzurich.com): for children with diffuse brainstem tumors. The clinic employs a team of doctors of different specializations with wide experience in DIPG treatment; a “DIPG-TAC treatment protocol” is created following consultations on the particular case. Following the tests, some or all procedures are recommended. One of the procedures seems to be the CED, liquid panobinostate (MTX110). It had been used in the past, in singular cases and with differing therapeutic effects, by the Harley Street Clinic in London. MTX110 can be also administered within a clinical trial to newly diagnosed pediatric patients (reference number of the trial is NCT03566199);
The Zurich team emphasizes the necessity of biopsy and detailed genetic tests. The present team began working only in February 2019, and therefore practical information concerning its activities will only be available in several months’ time. Contact: glioma@kispi.uzh.ch
Mail to contact
Diffused brainstem glioblastoma in children (DIPG) is particularly difficult to diagnose, and many hospitals cannot offer any treatment, except for possible participation in clinical trials. Below is the list of well-known hospitals, which we had contacted but which in all probability will not offer any precise treatment procedures for a child with DIPG (not insured in the USA): Boston Children’s Hospital and its partner clinic Dana-Farber Cancer Institute, St. Jude Children’s Research Hospital, University Medical Center Hamburg, Institute Curie in Paris.