In my "Cure and Active Surveillance" column in the Sept. 10 issue, I discussed some of the challenges patients with a potentially curable cancer may face if asked to consider active surveillance. Here's a patient handout that you may edit or use as is to supplement your discussions about active surveillance as a curative approach.
With hope,
Wendy
Understanding Active Surveillance
Dear Patient,
Our goal is to make the best treatment decision for you regarding your potentially curable cancer. Please read this overview of active surveillance to help us discuss the pros and cons of this option in your particular case. This will ensure we arrive at an informed treatment decision that reflects your values.
What is active surveillance?
Active surveillance is one approach to treating a few select types of curable cancer. The goal of active surveillance is to achieve the best long-term cancer outcome for you.
Of all the treatment options that preserve our hope for cure, active surveillance is the only one that enables you to delay or avoid treatment toxicities. It achieves this benefit by personalizing when we begin anti-cancer therapies-i.e., not too soon and not too late.
How is active surveillance done?
Active surveillance involves close monitoring of your cancer through periodic check-ups and diagnostic tests, including biopsies. This way, we document that your cancer is remaining low-risk and doesn't need treatment.
Why is active surveillance an option for me?
Given your type of cancer and your medical condition, active surveillance is a treatment option because...
* You have a low-risk cancer that is growing so slowly-if it's growing at all-that it poses no immediate risk to your health; and
* If your cancer were to progress sometime in the future, active surveillance would pick it up early enough that your chance of cure with treatment would be the same as if we started treatment now.
Is active surveillance the same as watchful waiting?
No. watchful waiting is a treatment approach intended to optimize quality of life-and not to cure cancer. Watchful waiting involves few tests and no biopsies. The trigger for beginning treatment is usually new (or worse) symptoms.
In contrast, active surveillance is a curative approach for patients like you with potentially curable cancers. It involves periodic checkups and diagnostic tests, including biopsies. The trigger for beginning treatment may be symptoms, as with watchful waiting. But usually the trigger to switch to active treatment is a change in the results of a blood test, scan or biopsy, while the patient continues to feel fine.
Unfortunately, people often mistakenly use the terms "watchful waiting" and "active surveillance" interchangeably. That's because they both fall under the treatment category called "expectant management" and share the benefit of delaying anti-cancer therapies. But for patients like you with potentially curable cancer, the two approaches are fundamentally different.
How long can we do active surveillance?
We can continue this approach for as long as the active surveillance indicates your cancer continues to remain a low-risk cancer. Some patients do this for the rest of their life.
We will stop doing active surveillance if you develop symptoms and/or your test results indicate a change of your cancer into a more aggressive form. At that time we would begin anti-cancer therapies.
Why not treat my cancer now, while it's early?
We know you have cancer now. The idea of not treating it is unsettling, to say the least. Everyone has been taught that early treatment is key to survival. Indeed, that's true for many types of potentially curable cancer. But for patients in your condition with your type of cancer, early diagnosis and treatment are not necessarily the best approach. Active treatment now may not yield the best outcome for you.
Thanks to medical advances, today the chance of curing your cancer is the same whether we treat you now or later, if active surveillance indicates your cancer has started to progress. Many people struggle with that idea when they first hear it. But excellent studies with reliable statistics bear it out. That's progress!
Why is delaying treatment important?
The primary reason for choosing active surveillance is to avoid over-treating you. As long as active surveillance shows that your cancer is remaining low-risk, we are sparing you the side effects and risk of long-term aftereffects of cancer treatments-while maintaining your same chance of cure.
Another factor to consider when weighing your treatment options is that researchers are developing more effective and less toxic treatments. Let's say you choose active surveillance as your treatment approach. If one day, whether 6 months or 6 years from now, test results and/or new symptoms indicate your cancer has progressed, we may have better treatments to offer you than those available today.
What are the down sides to active surveillance?
Active surveillance involves frequent check-ups and diagnostic testing, including biopsies. While it's not the same as chemo or radiation, you still have to deal with the inconveniences, discomforts, risks and stresses of check-ups and testing (needle-sticks, scans, biopsies, waiting for results).
Active surveillance can cause anxiety, since you are not actively treating your cancer and you don't know whether it will stay low-risk or not. That anxiety may resolve by itself as you adjust to the routine and keep in mind that you are only delaying treatment-and not your chance for cure. Many patients benefit from one or two visits with a counselor and/or short-term anti-anxiety medication through the adjustment phase.
Sometimes anxiety persists, even for patients who want to avoid cancer treatments and believe active surveillance preserves their chance for cure. That's okay. It suggests that active treatment may be a better option for them. Simply put, active surveillance is not for everyone. Our goal is finding the best treatment option for you, whatever that may be.
What if I agree to active surveillance and then change my mind?
You can stop active surveillance at any time. Let' s say that one day you decide you want to receive anti-cancer therapies, even if your tests continue to show low-risk cancer. No problem. We will be happy to discuss cancer treatments and get you started.
What now?
Please ask for referrals to support services (online and in-person) designed to help you process the medical information, manage the stress of uncertainty, and make wise decisions. Please keep us informed of how you are feeling, physically and emotionally.
Some support services can put you in touch with patients who have experienced active surveillance or active treatment. Learning from patients about the ups and downs may help clarify the issues involved. By obtaining support while you obtain sound knowledge, you'll nourish hope of making the best decision and moving forward with confidence and hope.