[it is a patients' family member guide - to make informed decision]

When bad things happen, it is meant to happen to make us change in order to change the bad situation.

Since my dad has cancer, I became very additive to learning new things, especially in medicine. In the past 2 years, I have read books about nutrition, conducted research on other patients and studied genetics and epigenetics. Of course, this process includes reading a lot of scientific research paper. The great news is, my dad's lung cancer tumor had shrink and is very stable, and no mets yet; we also know exactly what to do if any changes happens in him.

Now in retrospect, I realized reading one book in diet for cancer is not enough, and knowing a genetic mutation causing cancer is too generic. In fact, gene expression can be turned on/off by DNA (de)methylation [epigenetics], diet and parenting habit can alter epigenetics up to 3 generations, while retrovirus can be a gene therapy to change bad gene and at the same time, causes cancer. As a patient's family member, the key to deal with cancer, is to be informed.

How?

The process would seem difficult if we just start. But it will become easier and easier and the experience itself as well as the results are rewarding.

1. start with something you know.

The easiest way to get started, is to type in your answer in Google, and she will give you some suggestion. Or read a book that do not have a lot of medical jargons. One very famous book in dieting is called: The China Study, by Prof. Colin Campbell. [who does not eat anyway?? diet is easy enough] Or here is an article about dieting: http://www.telegraph.co.uk/foodanddrink/healthyeating/10868428/Give-up-dairy-products-to-beat-cancer.html

Drawback: we will still be overwhelmed by research data and some terminologies. And we are easy to be fooled by the convincing statement from survivors.

Please remember one thing: everyone is different. So if one diet works for breast cancer patient for example, does not mean it will work for my dad. How different are we? Besides height, race and gender and any other visible phenotype differences, there are 36,000+ genes and majority of them are linked to each other. In addition to that, epigenetics marks can turn on and off gene expression, and sometimes, not completely turn on/off. The combination of all these genetic and epigenetic differences, make every patient different from each others (although doctors will still treat you the same way as other patients).

2. Go deeper.

Although there are some medical terms you do not know, as you wikipedia the meaning of these terms, you start to build your ability to read scientific research. Now it is important to raise questions yourself, what treatment fit me best? Based on gene mutation, gender, habit, age, race, and all other things you already know, to form key words for Google Scholar to search for scientific papers. Try to read the results, and see how similar you (or whom have cancer) with the study subject. For example, in my dad's case, i will search for: EGFR 19 deletion, Asian, Male, Tarceva. Any combination might give you surprising results.

Drawbacks: there will be more jargons that you do not understand. The more you search, the more potential solutions you will find, which will be very confusing.

But another great news is, you collect the dots. Now the next step is to connect the dots.

3. Join the (scientific) discussion.

Yes it is true that there are lots of forums out there regarding how someone beat cancers, what diet they tried, and which doctor they see. But goes back to "everyone is different", everyone is indeed very different. Since you are already in the 3rd bullet point, you are more informed than a lot of people, including authors and survivors who wrote books and leave comments. So go ahead and take classes and shoot emails to research scientists to answer questions you might have. Here are a few classes that I would suggest caregivers to consider taking (they are all free!):

1. Epigenetic Control of Gene Expression, offered by Coursera & University of Melbourne;

2. Genomic Medicine Gets Personal, offered by edX & Georgetown University;

3. Drug Discovery, Development & Commercialization, offered by UC San Diego.

Drawback: yes it is time-consuming. The biggest drawback is, once you form a habit of learning, YOU CANNOT STOP.

These classes gather the brightest and the most motivated minds in research and medicine field. Using educational platforms like Coursera and edX, you will have an amazing opportunity to raise questions and even find out new clinical trials that are yet to be published in clinicaltrial.gov.

This is cancer and me. The journey has been fruitful, although it is somewhat bittersweet. But when i was brave to reach out, the fear went away and there are always people willing to help.

Next step, i will be building something to help guide through this learning process. Stay tuned :)