Jane is a ten-year survivor of a very rare form of cancer Myelodysplastic Syndrome. She has enjoyed several exciting careers including a librarian, counselor, teacher, and writer. She loves to write about surviving cancer, overcoming hearing loss, and her hearing ear service dog, Sita.
When it comes to cancer research, the Internet can be used for good or bad.
After I was initially diagnosed with myelodysplastic syndrome, I did what many people do. I perused the Internet for hours. The more I read the more confused and depressed I became. There are different types of MDS and the average life span ranges from living two months to 10 years. I did find my particular kind (deletion 5q) is one where cancer survivors usually live the longest. Even more confusing was that some articles called it cancer, and others called it a failure of the bone marrow to make healthy cells. Now MDS is considered a type of blood cancer because it was started by a single cell mutation.
The point I want to make is that I finally stopped reading everything I could get my hands on. I needed the initial immersion, but I was getting so depressed that I was making my diagnosis worse. I decided to stop researching, which I have a tendency to do because I was a librarian for 19 years. I also have a Ph.D. and dissertation under my belt. I needed now to learn to cope with my new normal.
I rarely research now unless I am on a new medicine. But I would like to offer some tips to help other people overwhelmed by all the information out there.
It is vitally important to research any new chemo or treatment. I was put on an oral medicine, Revlimid. I checked out all the side effects, and every month when I received my medication, the nurse had to recite them to me because it was a fairly new medication. But no one mentioned hearing loss. After my hearing went from severe to profound, I researched and discovered since Revlimid is a derivative of thalidomide, it is considered an ototoxic drug, meaning poison to the ears.
Another time when it is good to use the Internet wisely is if you are suffering new symptoms. I began to have terrible stomach pains that kept me awake at night. I was becoming nauseous when I ate and decided something was wrong. I mentioned it to my oncologist who immediately referred time to a gastroenterologist. After an endoscopy, I was diagnosed with esophagitis with multiple ulcerations. Medication keeps this under control. When I looked up the Vidaza chemo I was on, this was listed as one of the side effects.
Later on, I suffered muscle aches, and again, the Internet was my friend. This is another side effect from the Vidaza. My doctor confirmed this and prescribed over-the-counter mediation.
We need to be informed consumers. It is difficult not to be scared by reading all about the side effects, estimated amounts of time to live and other people’s experiences. However, there comes a point we get more and more frightened. The Internet outlines averages for information like life span estimates. It does not predict the exact outcomes for individual patients. Remember that.
Remember that average means that about half of the population is above and the other half below. Every single patient is different. You are unique. Survival rates depend on general health, age when diagnosed and several other factors. An example is when I went to my family doctor and voiced my fears about my longevity. He had known me for over 20 years at that time. He reminded me that both of my parents lived to very healthy old ages, and so this average most likely didn’t apply to me. In other words, no one really knows.
Also make sure that you are reading reliable sources. Mayo Clinic, Cancer Treatment Centers of America, American Cancer Society, Cleveland Clinic, MD Anderson Medical Center and CURE are all reliable. There are many others, but this is just a few. You can check with your doctor for a list. Anecdotal information is just that — anecdotal and someone else’s story. When I taught college, I always warned my students to not just research self reports, but professional websites.
I also find the websites helpful for information on bone marrow biopsies, procedures and tests. I feel it is better to know what is happening.
I do have mixed emotions about looking up the side effects of drugs and chemo. The list seems a mile long and scary. Remember that the drug companies are listing these as possible, and no one experiences all of them. However, now that I have been deafened by chemo, I do check that possible side effect with new medications.
Ask your doctor. I cannot stress this enough. After I found that the gastrointestinal problems may be correlated, I talked to her. Most oncologists are constantly researching information and may even make a call for you to places like the National Institutes of Health.
I have also discovered that nurses are another wonderful resource. I see them five times a month and chat with them while getting my chemo. Remember that they work with chemo patients all day, five days a week and spend a lot of time with patients with cancer. Often patients will confide in the nurses more than the doctors because they spend more time together. We all know how busy doctors are and do not want to bother them. It is the nurses who inform me about side effects and what they have learned from other patients. Some of them have even given me encouraging news about new clinical trials. I then can ask my doctor.
The Internet can be your best friend, if used judiciously. Or it can be your worst enemy and scare you if you don’t. Be careful when you surf and know that you are unique and not like anyone else. You will learn a wealth of information and it can make you healthier.