The information and services provided by the Center for Advocacy for Cancer of the Testes International (CACTI) are for informational purposes only. The information and services are not intended to be substitutes for professional medical advice, diagnosis or treatment. If you are ill, or suspect that you are ill, seek professional medical attention immediately. CACTI does not recommend or endorse any specific physicians, treatments, procedures or products, even though they may be mentioned on this site.
True experts in the field of testicular cancer.
In the world of cancer, Testicular Cancer is relatively rare. To give you some perspective, approximately 8,250 men in the USA are going to be diagnosed with TC this year. While that may seem like a lot, it only accounts for about 1% of all the cancers affecting men. More importantly, if you compare that number to the number of board certified urologists in the country (around 8,000), you’ll see that even the doctors who are supposed to know the most about TC do not actually get to see it very often. The same thing can be said for Oncologists, Pathologists, Radiologists, and especially General Practitioners. In fact, Urology News Online estimated that a GP in the UK will only see one case of testicular cancer for every 21.4 years that they are in practice!
So why are we telling you this? While we don’t want you to lose confidence in your doctors, we do want you to realize that due to the relative rarity of this cancer, many doctors simply do not have the experience and expertise needed to deal with some of the complexities involved in its treatment. Only a small percentage of urologists perform a nerve sparing RPLND operation often enough to be considered experienced, let alone expert. Similarly, many oncologists are on uncertain ground administering the normal BEP protocol, let alone treating TC recurrences and advanced metastatic disease.
The same can be said for the pathologists that look at the original slides after the orchiectomy. One study found that 32% of the pathology reports evaluated had errors, and 36% of those errors resulted in a change in the treatment or prognosis. In fact, in Scotland they “found that survival rates for testicular cancer at one unit were 10 per cent better than at four others“. Even worse, an EORTC Study found that among poor prognosis patients, those treated at a center that rarely sees this type of cancer had a risk of death almost twice as high as those patient treated at a center that sees a lot of this cancer. Their treatments did not work as well and they suffered from more treatment related problems. There clearly is an advantage in making sure that your doctor knows how to treat this cancer!
Because of these numbers, we are strong believers in getting the right diagnosis from the right source. This may involve getting a second opinion, and it may also mean consulting with an expert in another city (or country!) in order to verify the proper treatment. It may involve having your slides sent to an expert pathologist to verify the histology of the tumor, or it may mean traveling to have the surgery you need done by someone who does it frequently and expertly.
We have compiled the following list of experts in order to help you get the best treatment – you may already be asking “Are these doctors the ONLY ones who know how to treat testicular cancer?!” – certainly not, but these doctors have chosen testicular cancer as their specialty / area of research, and they have been specially trained to treat it. They know what to do, and they are more than willing to help you or your doctor understand the correct treatment options.
If your cancer has recurred after initial treatment, or if the initial treatment did not work, then we strongly encourage you to call one of the doctors on this list!