As the director of a cancer education project, I frequently get questions from friends, family members and others about people diagnosed with cancer. Hopefully this advice will be helpful to others. Note that I am not a medical doctor of any kind. I am a PhD. I do not give medical advice on cancer cases. This is my personal advice from having working in the cancer field for many years.
- It is important to always get a second opinion about any cancer diagnosis. It is just too important of an issue to not get one. The second opinion should include an evaluation of any biopsy samples (if applicable). I think it is much better to get two sets of eyes (and/or computers) to look at any samples. This is better than just getting copies of the reports. Don't feel badly seeking a second opinion. The doctors work for you, and they should be fine with this.
- I believe that it is important to go to a specialist in your cancer type. Cancer centers designated by the National Cancer Institute are very good choices. They are required to have expertise in different cancers. Studies have shown that patients treated and cancer centers have better survival than those treated elsewhere. Even if you have to travel some, it is worth it. As a patient I know has said - "Cancer is not a disease of convenience." It is important to see the best person for your particular case.
- Someone should always accompany you to all medical appointments. Cancer is a very stressful diagnosis. It is very hard to process all the information involved. A second person can make a big difference - taking notes, asking questions, etc.
- Write down all questions and bring them with you. It is very hard to remember everything, so don't try. Don't leave until you've got answers.
- Record the appointment on a phone or other recording device. This is a great way to review the meeting and share it with people who can not be there. Always let anyone who will be recorded know what you are doing beforehand.
- Look into whether or you qualify for any clinical trials. Cancer clinical trials are always comparing current treatments with things that could work better. There are no placebo treatments in cancer trials. Note that the clinical trials offered at one location can be different from those available from a clinic right down the street. The National Cancer Institute has a large database of clinical trials that can be searched (https://clinicaltrials.gov). Also, know that you can leave a clinical trial at any time, for any reason.
I hope that these are helpful. Please share with your friends/family to help empower others.
Dr. Gregg Orloff