European Cancer Clinics

If you are looking for information about the European cancer clinics, I recommend the Inspire website. Although there are a lot of clinics in Europe that offer treatments not available in Canada, based on reviews posted by Inspire members, it seemed that Herzog and Hallwang had the most success. Other clinics that I have heard about include Kleef in Austria which I didn't investigate based on some mixed reviews online and Paracelsus in Switzerland which seemed to focus more on  alternative treatment and less on immunotherapies which is what I was interested in.

I started by contacting the two German clinics by e-mail and giving them a summary of why I was interested in visiting the clinic along with my medical history. I heard back from both within 24 hours which was very impressive considering I have made urgent calls to my Oncologist at home and it takes longer than that to get a response.

In terms of treatment recommendations, both offered whole body hyperthermia and complimentary treatments to support the immune system but I found that Herzog was much more focused on chemotherapy. Right away they recommended a moderate dose of chemo which made me nervous given that I have already been down that route and it was not as effective as it should have been given that blood tests show I still have cancer cells floating around in my body. On the other hand, it also seemed like an aggressive course of treatment given that I am in remission, meaning that there are no signs of cancer on my PET/CT scan. 

It's so hard to be in this grey zone where circulating tumor cell tests indicate that malignant cancer cells are still present but whatever is happening in my body is microscopic and too small to be detected on imaging. Having said that, it could always be worse and I am thankful that whatever is happening was caught in this "grey zone" and not when it is potentially too late. 

In terms of cost, Herzog was around 30,000 EUR for 3 weeks of treatment which I understand is the typical length of time you can expect for your first stay at one of these clinics. Luckily for me, my parents have offered to pay for the treatment so cost did not factor into my decision. The main things I was looking for were treatments that were evidence based, supported my immune system, had been successful for others with triple negative breast cancer. 

After contacting Hallwang, I found that they met that criteria. Their treatment recommendation did not include chemotherapy but instead they wanted to test my tumor tissue for tumor associated antigens which would help determine which immunotherapies would be successful. This personalized approach made the most sense to me but unfortunately it comes at a cost. The testing alone was 3,800 EUR which is about $5,500 CAD. A number of different immunotherapies were available based on the results of the screening and when you add in the complimentary treatments, bloodwork and daily rate, they came to around 50,000 EUR for 3 weeks of treatment. 

The question I'm sure some people would ask is why spend all of this money when for all intents and purposes, I am cured? I have done everything Western medicine had to offer, my last scan was clear and I have no physical symptoms. This would be a difficult decision for many but seemed pretty clear to me. My decision to pursue additional treatment was based partly on intuition and the fact that all of my research had led me down this path for a reason but also the fear of this cancer coming back. The fact that I am young, my cancer was triple negative, had spread to my lymph nodes and I had residual disease after chemo puts me in a high risk category and I am willing to do anything in my power to lower, or better yet, eliminate that risk. 

Circulating Tumor Cells

CTCs are cells that a primary tumor sheds into the bloodstream or lymph system and these are the cells that can form metastasis, even after the primary tumor is removed. They can potentially play an important part in disease progression which is why many clinical trials have begun tracking them. I have seen a few clinical trials now that are designed to show whether there is a link between the number of CTCs and people who's cancer recurs versus those that remain disease free.

Even though this concept of CTCs is new in North America, it is something that has been done for a number of years already in Europe. Maintrac, which is the lab that did my chemo sensitivity testing, also measures circulating epithelial tumor cells and is one of the methods that can be used to track them. Cell Search is another system that measures CTCs and is the only one that is FDA approved. From what I have read, the number of cells detected by both systems can be drastically different which is why it is good to pick one and stick to it. The reason I chose Maintrac is because they claim to have the most sensitive CETC counting system in the world. They do not "touch" or extract the cells so this way no cells are lost when being processed. That is why the number of CTCs they report will be significantly higher than Cell Search. They also do not work with cut-offs to determine prognosis, only an increase or decrease in cell numbers. Cell Search on the other hand uses ≥5 CTCs as the cutoff for unfavorable prognosis.

Although it is approximately $350 each time you test, to me this seemed like a good way to gauge what was happening in my body post treatment. Unfortunately, rather than seeing a decrease in cell numbers which is the desired outcome, the two tests I have done showed an increase in cell numbers. I did one post radiation as a baseline, another 3 months later and in that timeframe, the cell count more than doubled. Fortunately this was caught early which is the intention of monitoring CTCs but these results together with the positive Oncoblot are a clear sign that I need to take action now.

Maintrac

Chemo sensitivity testing is something else I wish my Oncologist would have made me aware of. Did you know that different chemo regimens can be tested on your tumor cells? This testing can even be done before you start chemo to test the efficacy of the drugs being used. What a novel concept!

Before chemo, I was aware of the Oncotype Dx test which my Oncologist confirmed is only for women that are estrogen receptor positive to determine the aggressiveness of their cancer. I was told that because I was triple negative, AC-T was the regimen that worked the best and that was the end of the conversation. Unfortunately, even if my tumor was tested, I don't know if that would have changed the course of action. Our medical system is just not there yet but hopefully there will be a day where chemo is more individualized because people's cancers respond differently.

For example, my testing showed that Carboplatin which is a drug often combined with Taxol for women that are BRCA positive, was not effective. The response of my cells was 20% where the optimal response is 100%. Xeloda (also known as Capecitabine) on the the other hand was 85%. Other non-chemo therapies can also be tested such as mistletoe which is commonly used by Naturopaths. I tested two types of Mistletoe and got very different responses. Helixor was less than 10% and Iscador was 50%. Unfortunately I have been taking Helixor since completing radiation which is frustrating but I'm glad I did this test because who knows how much money I would have spent on something that was not effective. The effect it had on my body is also a concern because even natural therapies can have ramifications.

Since I received the results of the Oncoblot test, I have been gathering as much information as possible to help determine next steps and this chemo-sensitivity testing is just one piece to the puzzle. Unfortunately it is not cheap at approximately $500 per substance that you want to test but if you are able to afford it, this may be a good idea either before you start chemo or even afterwards if like me, you do not have a PCR (pathologic complete response) and are considering adjuvant chemo.

There are various companies that offer this testing. Mine was done through Maintrac which is a lab in Germany. I was able to have my blood drawn by my Naturopath and the sample arrived in Germany 48 hours later via FedEx.