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.
The remarks posted by patients with cancer on the Internet can be skewed. Here are four tips to keep in mind when researching your condition and treatment options.
I receive e-mails and questions from people all over the country because of my website and articles I write for CURE®.
There are so many poignant questions and concerns:
“What chemo are you on?”
“What are the side effects?"
“I am scared to death to start chemo after reading about the side effects from patients on the Internet.”
I just want to shout through the computer — "STOP DRIVING YOURSELF CRAZY!"
I am the first person to Google any new conditions, chemo or treatment I am on. However, the key is knowing when to stop! When I was first diagnosed with myelodysplastic syndrome (MDS), I read about it by the hour. The more I read, the more confused I became. It is a cancer, it is not a cancer, you can live an average of 18 months, and you can live up to 9 years. Some people need oral chemo, others need a bone marrow transplant — HELP!
When I finally found out there were four or five different kinds of this cancer and determined which one I had, I settled down to read about that one. I was fortunate to have the one that people live the longest. I found out which oral medication I would be on. I switched from a doctor who would not answer my questions to one who always asks before she leaves the room if I have any concerns. Then I signed off because I wanted to stop reading and start living!
Here are four tips to keep in mind when researching your condition.
1. You will not experience every symptom listed.
Each time I have been on a new chemo, I look it up. But here is where you need to be careful. If one reads the literature accommodating any — and I mean any drug (even aspirin) there seems to be every side effect listed in the world. Drug companies are required to list any symptom one person or more may report. Admittedly, chemo is poison so somewhere in the world people would have suffered nausea, vomiting, allergic reactions and on and on. But most people do not have every single one of the reactions or they would be dead!
2. People who suffer negative effects are more likely to write about them than success stories.
When people tell me they are scared to go on chemo after reading all this “stuff” posted by patients with cancer on the Internet, I use a caution: Remember that people who suffer negative effects are more likely to write about them. If the effects are not as bad, they may be off doing other things and living their lives. The remarks on the Internet can be skewed. It is not that I don’t believe patients have bad side effects and I have certainly had them, but I would rather experience some of these then not live!
However, the cancer survivor does need to know what to look for on each new medication. When I started my Vidaza shots, the nurse and the lab assistant sat down with me and carefully went over a list of side effects including fever and chills. They told me to call the doctor no matter what time of the day or night if my fever was over 100.4 degrees. I did experience these effects by the third day and called the oncologist on duty. We decided since I was coming in the next day I would be checked, but the fever went away on its own.
If something happened that I suspect is a side effect of chemo like the esophagitis and ulceration of the stomach I experienced, I would look it up to see if this was common. It was listed as a possible side effect, but a single pill from my gastroenterologist took care of it and I moved on.
3. Every patient is unique and can respond to treatments differently.
We also need to remember that every person is different. For example, the doctors are reluctant to put me on steroids due to a rare immune deficiency. They are not sure what would happen because the statistical chances of finding a patient or two with both my rare type of cancer (MDS) and the rare immune deficiency (IGA) is slim to none. If it becomes a matter of saving my life to be placed on steroids, I know the doctors would do it under strict medical supervision.
Recently, I was put on Procrit shots for several months. I quickly looked up the side effects. The usual long list was there but the one that repeatedly came up first was the danger of blood clots. I turned off the computer knowing if there is any redness or swelling, I need to go to the Emergency Department immediately. The Internet provided me with the important information I sought, so I decided to stop there.
You may also want to use your pharmacist to help you with any new medication, whether chemo or not. These professionals work with the drugs eight to twelve hours a day and are very informative and helpful
4. Consider the source.
The other thing we need to remember is where the information is coming from. Other patients are a huge help in support and ways to cope. For factual information, be discriminating on the Internet, and use realizable sources like Cancer Center of America. AICR, Mayo Clinic, Cleveland Clinic, MD Anderson and other research facilities.
People actually have sent me articles stating there will be a cure for all cancer coming out in a year. When I check the source; it is usually a place I never heard of.
Really? I think if there is a cure my oncologist would tell me!
In summary — use the resources at your disposal but be careful. Do not get into a panic due to every single story, symptom or side effect. You are an individual and it is your body. Trust your own instincts and ask questions of the people who know you the best, like your doctor. Let the Internet be your friend – not your foe!