Expert: Claes-Gustaf Nordquist, M.D. - 9/1/2008

Question
My son had the above tumor partially removed at age 2.There was no progression until the period Nov 2007 to April 2008 where it increased in size by 1cm.A follow up scan was done in August 2008 indicating no increase in size,The tumor is situated on the brainstem and is situated close to the optical chiasm .We have had eye /vision and hormonal tests done and everything is normal.My concern is that we are running out of time.It has been recommended to us that proton therapy is the best option however the Proton center in South Africa cannot offer treatment for 5 days per week for 5 to 7 weeks due to our energy crisis.Another doctor has suggested stereotactic radiotherapy in place of proton therapy however my understanding is that the side effects are worse using this option.My questions therefore are:which is the better option Proton therapy or Stereotactic radio therapy.
Where can we get this treatment outside of South Africa and what is an approximate cost.Our Professor looking after our son has communicated to France and Sweden for assistance however its been two months and we have had no response.Thanking you in anticipation.Aubrey Els

Answer
Both proton beams and stereotactic radiation therapy (GammaKnife, CyberKnife) can probably be used but proton beams will probably give you a better definition. In Sweden (where I live) proton beam therapy can at present only be given at the Uppsala University Hospital (Akademiska Sjukhuset) in Uppsala (a university town about 60 km/40 miles north of Stockholm). It is done there in cooperation with the department of physics of the university in the so called Gustav Werner's Institute where this treatment method was pioneered - first such treatment in the World - in the 1950'ies. I live in Stockholm and have been retired for more than 5 years. So I do not have any contacts in Uppsala any more that I can use. I'm not even sure if this treatment is managed by the radiation therapy department or the department of neurosurgery there. But the phone no. to the hospital exchange is: international dial code-46-18-6110000 (46 is the country code for Sweden). Sweden & South Africa are both more or less in the same time zone. Stereotactic radiation therapy (gamma rays) is also a Swedish invention made by the late professor of neurosurgery, Professor, Dr. Lars Leksell, M.D., Ph.D. of the department of neurosurgery Karolinska University Hospital and the Faculty of Medicine, Royal Karolinska Institute in Stockholm. His invention is in English called the GammaKnife and in Swedish Leksells kula (Leksell's ball) because it looks more or less like a sphere. Karolinska is my own old Alma Mater so I know it much better (I'm now myself a patient there in the department of radiation therapy - my old workplace - for prostate cancer). Over the years here I have actually recommended a couple of patients - both from Denmark - to seek GammaKnife treatment help at Karolinska (one for an acusticus neurinoma and one for a meningioma in a difficult location). At least one has been treated successfully. In Karolinska it is the department of neurosurgery that is in charge of the GammaKnife.  The name of the dr. there in charge of it is Dr. Elfar Ulfarsson (he is from Iceland) and his e-mail address is: elfar.ulfarsson@karolinska.se and the phone number to the hospital exchange is: international dial code-46-8-51770000. The size of your son's tumour is of great importance in BOTH these treatment methods! It may not be too big! I honestly suggest that you contact Dr. Ulfarsson first. He can tell you what he thinks is possible with both these methods in your son's case and if he thinks the proton beam treatment would be better I'm sure he will guide you to Uppsala! A letter of referral from your son's dr. is NECESSARY! Since you come from South Africa and therefore from outside the European Union - unless you also are British subjects which I know some people in South Africa are too - you will have to pay the hospital here for your son's treatment. How much that will be I do not know but it will not be cheap. In both cases it is the local county council - in charge of public medical care - that wants your money, so either Uppsala County Council or Stockholm County Council. I'm sure however that the Swedish Embassy in South Africa can help you with such details. But they must have been taken care of before any treatment can begin! I will send Dr. Ulfarsson a copy of your question and my reply. I do hope that I have been of help and that this will help your son! Good luck!