Sometimes, cancer patients startle me. I will find out someone has or had cancer and I will ask them what type of cancer they had and what treatments they received. So often, I get a blank stare, and they tell me, “I don’t know. I just did what the doctor told me.” Ummm, okay, but that’s not very wise.
For the majority of the past six years, I have received quite good care. However, the medical system is just that: a system. Not all doctors are as knowledgeable as they should be. Not all doctors care enough to give you the best treatment and present you with the best options they can. The rarer cancers should be diagnosed and treated at a major cancer center. In addition, doctors that are not oncologists will more quickly “write off” someone who has cancer, thinking the patient will die anyway so what’s the hurry about getting treatment for them. To get good care, a patient must advocate for themselves.
So, advocate, advocate, advocate!! Ask for your specific diagnosis. Make sure you are even given a correct diagnosis! There are many, many different types of cancer. For example, Non-hodgkin’s lymphoma, the cancer I have, has over 60 types. That is JUST lymphoma. Depending on which type of lymphoma a patient has, the treatment will vary greatly and long-term survival will vary just as much. I was misdiagnosed at the beginning; most of general practitioner doctors wrote me off. The doctors seriously dropped the ball when I was first diagnosed. Just blindly going along and trusting your doctors is NOT a good idea. AT ALL.
So advocate! Do research online. Research what treatments are standard for your type of cancer. Contact doctors at other cancer centers and get second opinions if necessary. Look up survival statistics. Look up the side effects of the treatments you are getting so you don’t go into panic mode the instant something happens. Weigh the long-term side effects and the quality of life you can expect after treatment. Ask your doctor questions, lots of questions. If he doesn’t like you to do research or ask questions, find a different doctor. This is your life and your health.
If you have cancer, you may be too sick to do all the research yourself. That’s okay. Get a family member or friend to do it. Get them to research and tell you what is important. They can help you ask questions and record the doctor’s answers. Knowledge is power. Ignorance is NOT bliss.
Below, I list websites I use quite a bit in my research. Some relate specifically to lymphoma; others are more about cancer in general. Some of the sites are written in laymen’s terms and therefore fairly easy to understand for the person who doesn’t have a medical background. For myself, I prefer the websites that are medically detailed with medical terms. While they may take a bit more time to understand, they also give a much more complete picture. It helps matters that I’ve been doing research like this for nearly six years now. I nearly have a medical degree in lymphoma by now! Since people know I do a lot of medical research, sometimes I get asked to do research for others.
Not all websites are created equal. Some are authoritative and medically correct. Some are woefully inaccurate or promote little more than quackery.
General Guidelines for Conducting Medical Research Online
- Websites to trust:
- Websites connected to major medical centers, such as Mayo Clinic, Sloan-Kettering, MD Anderson, Dana Farber, UCLA, and John Hopkins
- Websites that end in .gov. These are official, government websites, so are generally very accurate.
- Websites connected to medical foundations or societies, such as the Leukemia and Lymphoma Society, American Society of Hematology, American Cancer Society, Liver Foundation, etc.
- Websites to use with care:
- Wikipedia. Wikipedia is an online encyclopedia. Writers from around the world contribute articles. Generally, the articles are accurate, but it can vary a lot. Wikipedia is a good place to start your research, but not to stop. Move on from there onto a more authoritative website.
- General medical websites. These would be the online equivalents of the printed medical dictionaries before the world wide web. A few examples are emedicinehealth.com, webmd.com, healthline.com, and medicinenet.com. These will give you a good introduction, but since they are a general medical website, they cannot give in-depth information on any one medical issue. Once again, they are a good place to start, but not to stop.
- Websites to avoid:
- If a website has a lot of of ads and pop-ups; misspellings; and unfounded claims, take what they say with a grain of salt.
- Websites that promote “alternative” cancer treatments. While some “alternative” treatments can be beneficial, there are many, many others that claim cures but are nothing but a lot of hocus-pocus and quackery. Some, I would even consider to border on witchcraft. If something sounds too good to be true, it probably is.
Now you are all set! If you want to find websites regarding your specific cancer or illness, just google it! Then sort through the results according to the guidelines above.
Websites about lymphoma
Websites about cancer
https://www.medscape.com (You will need to create a log in to access all the articles, but it’s well worth it.)
Another part of advocating for yourself is knowing about clinical trials. Now, we sure hope and pray that you beat cancer the first time around! However, if you don’t, and want to to try a clinical trial, this website is the definitive one about clinical trials: https://clinicaltrials.gov. It lists all the open medical trials for all diseases in the United States and has quite detailed search options. One time, I printed out clinical trials I thought might be options and presented them to my oncologist. He reviewed them and then made contact with those administering the trial. A good doctor will want you to do research and present him with ideas.
Cancer Forums and Support Groups
Cancer, or any chronic illness, can make a person feel very alone. Though friends and family care, they don’t truly know what it is like to suffer, do chemo, lose hair, face death, and so much more. To talk to someone who “gets” it without even having to voice it all can be a gift. Don’t isolate. Don’t tough it out on your own. Reach out. There are so many opportunities for connection around us. You can either search for support groups in your area or connect with other cancer patients and survivors online. In addition, ask the medical center where you receive treatment if they know of any local support groups for your cancer or illness.
https://csn.cancer.org/forum (all types of cancer, a different forum for each type)
https://www.lymphoma.com (for Hodgkin’s and non-Hodgkin’s lymph0ma)
http://stupidcancer.org (for young adults)