Tell us who you called and when
It is often confusing to know what needs to be reported to your doctor. Is my fever high enough that I need to let her know? How worried do I need to be about this headache that has lasted for two days? Which doctor should I call to ask about my lingering cough?
There are a few times in Cancer World when it is imperative to make a call right away. If you are on treatment and your temperature goes above a certain point (usually 100.2 but different doctors may say different things); if you think you are experiencing an acute crisis like a heart attack or a stroke; or if there is a sudden and dramatic change in a symptom. It is pretty easy to recognize these moments, but what about all of the others?
Obviously your doctor or nurse does not need hourly updates unless you have been asked to call that often. They do need to know if there is a real problem. Whenever I speak with someone who is soon scheduled to begin chemotherapy, I remind her that, the first time, all we can do is make our best educated guess about symptom control. We know what helps most people, but everyone is different, and your reactions may be less common. The reminder is: Don't suffer in silence and think that chemo is just like this. It does not have to be. If you are miserable, call us!
At BIDMC and all other cancer treatment places, there is someone available to speak with 24/7. If you are miserable at 2 AM, please call. That is their job, and that conversation may have you feeling better by 3 AM. There are no gold stars in heaven to be earned by toughing it out and not calling.
Another variation of this is the "Two Week Rule." This mostly applies to people who have completed active treatment and are going on with life and yet worrying about cancer. We all know that, especially in the first months, every single ache or pain or cough panics us. Oh no! The cancer must be back, we think, forgetting that we helped to move a piano the day before. Again, obviously, if you are in the midst of a medical emergency (a possible heart attack or stroke or something else equally frightening), call 911 immediately. Most things, however, fall in the worry bucket, not the panic bucket. If your shoulder is sore or your back aches or you have a lingering cough, give it two weeks. You may even want to make a note somewhere of when you first noticed it so you don't forget the timing.
If two weeks pass and you still have X, the next question is whom to call. Some people prefer to start with their PCP, who seems less scary. Others prefer to go directly to the oncologist and acknowledge what they are scared about. My advice here is to call the person with whom you have the most comfortable relationship and whom you know will call back quickly. Most of the time, X turns out not to be cancer or anything else awful, and this experience then serves you well next time, when Y occurs.
The core advice here is to have a plan in advance of experiencing a need, let alone a crisis. Speak with your doctor(s) about the best way to reach her and what kinds of things she wants reported. Decide how and whom you will contact when you have a concern, and be reassured that most things are not emergencies. It is imperative that you feel secure in knowing that you will be heard, that your needs will be met and that your questions will be answered.
How do you manage your worries? Whom do you call? Share your story in the BIDMC Cancer Community.