Be cautious of misleading cancer treatments: what you need to know

Over the past week, the media in Belgium, Spain, Germany and Austria have reported on private clinics offering expensive experimental therapies to people with cancer. We are very glad this important issue is getting the attention it deserves.

At My Cancer Navigator, the free information service from the Anticancer Fund, we have noticed a growing number of questions about these clinics and the types of treatments they offer, mainly dendritic cell therapy(*). While patients seek hope, many of these treatments raise serious concerns.

Red flags in unproven cancer treatments

When we researched these clinics, we found red flags that had us concerned about the use of unproven experimental treatments, often produced in unknown laboratories and without follow-up by a cancer specialist. In some cases, it even seemed questionable that people were really receiving dendritic cell therapy they paid for, based on the way the treatment was explained and administered. We have asked specific questions from the clinics but never received any answers.

Investigational journalism exposes the truth

We brought our concerns to Lars Bové from the Belgian newspaper De Tijd, who started an international investigation, with journalists in other countries. They focused on Immucura, a clinic we receive frequent questions about, and confirmed our suspicions and raised new ones. They also highlighted the lack of transparency by the company. It is still unclear where and how their product is produced, and what exactly is in the injections that people receive. In the cases where we did find out who administered the injections, it was not by or under supervision of an oncologist.

Patients desperate for groundbreaking treatment options

When you are dealing with cancer, it is understandable that you are interested in promising, innovative therapies.  Even more when your treating doctor tells you there are no more treatment options left for you and that only palliative care can be offered.

If at the same time you are overwhelmed in the media with trailblazing stories about immunotherapy, cell therapy and cancer vaccines, you want to get access to these at any cost. New experimental therapies can be offered in the framework of a clinical trial, and this is by European law, free of charge. In case no clinical trial is available in your hospital, it absolutety makes sense to look outside the hospital, maybe even outside the country.

What to look out for?

In our opinion, the use of experimental treatments should meet certain conditions:

• Part of a clincial trial: it should be in the setting of a well-designed clinical trial, that has been evaluated by regulatory authorities and an ethics committee.
• Transparency: it should be clear where and how the treatment is produced.
• Free of charge: it should be free of charge for the patients who agree to try it.
• Results should be published: the results should be analysed and made public in peer-reviewed scientific journals so future patients can benefit.

Ask the right questions

So what can you do, when you encounter a therapy that sounds promising, but maybe also too good to be true? Talk to your doctor, or nurse specialist.
If you are in contact with the private clinic, ask critical questions:

• In which laboratory is the product made?
• How many people with your disease have they treated and what were the results?
• Have they published results on the use of their treatment in a scientific journal?
• Which doctors are responsible for the treatment? What is their specialty?
• How will they take care of you in case you get side effects from the treatment?
• Will they provide you with a letter for your own doctor, so he or she knows what treatment you received?

How My Cancer Navigator can help

In case you have doubts or questions, you can contact My Cancer Navigator, our free information service. We can support you with unbiased, scientific information, and if the clinic or proposed therapy does not seem reliable, we can find out if there might be other relevant treatment options available for your situation.

(*)dendritic cell therapy is currently being researched by many reliable laboratories and clinics throughout the world. Results so far are modest, and none are approved for use in humans outside of clinical trials, except one therapy for certain prostate cancer patients that is not available in Europe.