A Gut FeelingI spent much of the morning before I was admitted to an Intensive Care Unit for highly toxic experimental therapy puking my guts out from fear. Among other things, I was terrified of side effects.
I knew that if I had to be in ICU it wasn’t because it was going to be easy! My doctors had given me an informed consent paper that listed every possible thing that had ever happened to anyone getting this treatment. I could have a heart attack. I could go blind. I could get a perforated bowel and need a colostomy. There was a fair chance my lungs would fill with fluid and they’d have to put me on a ventilator.
The treatment could kill me half a dozen different ways. The list went on and on.<.
P>Use Your Head!Although I was scared in my gut, my head knew three things. First, the chance of side effects that would cause permanent damage was really pretty low despite the long list of improbable things that could happen. Second, the normal, common side effects were sure to make me very miserable during treatment, but for my treatment, those side effects resolve completely within a few days to a few weeks of stopping treatment. Third, this was by far the best kind of treatment there was at the time. I knew that if I didn’t get it I was almost certain to die of cancer within a few months, and that with it I had a chance.
So despite my gut reaction, deciding to go for it was really a, “no brainer.” My advice when thinking about side effects is based on these same three things.<.P>Three Things to ConsiderFirst, get a realistic idea if the possible benefits of the treatment are worth it to you. This means understanding how much the treatment is likely to help you or how much it could help you in the best possible case. Think about the side effects in comparison to other options. A difficult and dangerous therapy may be well worth it if there are no other options.
It might make more sense to do something just as good or maybe almost as good that’s a lot easier and safer – that is, if there is such a treatment.Second, consider the chances of permanent damage, and how serious that might be. For most drug treatments, the chances are lower than you might think. Take my treatment – bet you wouldn’t guess the chance of dying from that treatment was actually much less than 5%! Radiation and surgery often do have serious permanent side effects (but far from always!). Care to guess the chance of serious permanent damage from an amputation? Whatever the treatment, don’t assume – get the facts! One special area to consider is late side effects. Some cancer drugs can cause a second cancer years later, and some can also cause serious damage to the heart that may not show up for years.
You have to put these things in perspective though. If you have a 95% chance of being cured of your cancer with treatment, and a 100% chance of dying without treatment, it doesn’t make a lot of sense to get too excited about a 10% chance of a second cancer down the road. In some cases though, different treatment options may have different chances of causing serious damage. You may be able to find a safer treatment by researching the options, though, of course, there’s no guarantee of that either. Some treatments are much safer in the hands of a real expert. Perhaps there is someone who is particularly expert in a delicate surgery who can do it more safely than most other doctors. It never hurts to get the best!Third get an idea of the treatment’s “misery index”.
How much will the usual side effects make you temporarily miserable? How long will you have to be on treatment? What will that mean to your “quality of life”? If you are facing a highly toxic treatment that will only extend your life a short time at best, you may well decide it isn’t worth it. As a 32 year old patient with a small, but real, chance to beat terminal cancer, I was willing to endure whatever it took to get that chance. No matter what. It’s important to get the facts on just how miserable the side effects are going to be.
Don’t assume you’re going to get every side effect in the book – that’s very unlikely. To get an idea of the “misery index” of the treatment, consider the usual side effects, not the rare ones! And remember, different people given the same treatment can have different side effects of varying intensity. Despite my fears, it turned out that I had less side effects than most patients, and more important it wasn’t nearly as bad as I thought it was going to be. Finally, remember that if the side effects are too severe, your doctor will stop the treatment, reduce the dose, or maybe modify it by eliminating one of the drugs in a combination treatment, and of course, you always have the option to stop treatment if you find the side effects unacceptable.Take ChargeIt’s also worth thinking and asking about whether there is anything you can do to prevent or reduce side effects. You may be able to reduce the chance of serious infection by taking appropriate precautions.
I found out that the doctors were really concerned about the possibility of neurological side effects with my treatment. In the hospital I was offered a whole bunch of “zonkers” – drugs that would tend to zonk me out – like sleeping pills, pain killers, and compazine. These were all optional, so I took as little I could get away with.Perspective is EverythingI think the biggest mistake you can make is to refuse life saving treatment because of a fear of the side effects. I’ve seen it happen. I know my fears tended to make the risks feel much worse than they actually were. I had to fight my gut to do the right thing. In my experience, many people have an exaggerated idea of how serious risks really are.
Remember that without effective treatment, the cancer itself is a risk. Often a very high one. Sometimes nearly 100%. Look at the risk of the cancer to put the risks of the treatment in perspective.