Take Control of Your Disease

Dr. Lenz

I wanted to share with you an amazing story which began a few weeks ago.  A 28 year old woman with metastatic colon cancer with intra-abdominal spread came for a second opinion. She is well-educated and knows what she wants. She already had two opinions from the National Institutes of Health and the University of California at San Diego, and was open to hear what we would suggest.

I love patients who are informed (although it does not necessarily mean they have all the statistics and data correct). The discussion can move more quickly to create a plan, and there is no need to spend much time on the basics. But sometimes the problem with having a lot of information, especially from the internet and all the good friends you have, is prioritizing it. You have to decide what is the most important, what is validated, and what is a scam.

For this patient, we decided to do genetic testing on the tumor then select chemotherapy based on the results. We wrote a review putting all the data together, and recommended that the patient see Dr. Paul Sugarbaker, a surgeon who specializes in gastrointestinal oncology, after her chemotherapy treatment.

This patient was well-informed, with a very supportive family. We connected her with another young patient who had metastatic disease in the abdominal cavity and has been cancer-free for 18 months. They were able to talk and put the information on a different level. Many patients struggle with all the overwhelming information, and have a hard time deciding what to do with so many, and often contradictory, recommendations.

The patient decided to deal with the disease head-on. She was proactive and put down her experiences in a blog. I don’t know if writing a blog is helpful for all patients, but it is for her. To identify and articulate the processes and challenges is the first step to overcome them. Personally, I am very proud that WUNDER is part of the blog’s name – it is the German word for miracle – and we’re doing all we can to make this another miracle.

There are many blogs and chat rooms which are important for our patients. Two good ones are the Colon Club as well as the Colon list at ACOR.org. Doctors can do so much, but without patients helping each other, we are much less successful. THANK YOU ALL.