The following excerpt is from: After You Hear It's Cancer: A Guide to Navigating the Difficult Journey Ahead, John Leifer and Lori Leifer. Rowman & Littlefield (July 2015).
The Middle-Stage of Cancer:
Many patients enter a midpoint in their journey with cancer. It is what author and ovarian cancer survivor Susan Gubar defines as the “middle stage.” Writing in a June 5, 2014 article in the New York Times, Gubar stated:
For some of us, there is a middle stage in this journey. Because of advances in cancer research and the efforts of dedicated oncologists, a large population today deals with disease kept in abeyance. The cancer has returned and has been controlled, but it will never go away completely. Like me, these people cope with cancer that is treatable for some unforeseeable amount of time. Chronic cancer means you will die from it—unless you are first hit by the proverbial bus—but not now, not necessarily soon.
Allowing for disappointment while not relinquishing hope
When you hit these milestones, it is time to be kind to yourself: a time to express your disappointment without relinquishing your hope. You will be traversing a new path on your journey, but first, you must understand how the additional knowledge acquired to date about your condition impacts your staging, prognosis, and recommended treatment options. Your physician should provide this information, as well as recommended modifications to the treatment plan.
Now’s the time to take out your compass and reassess the direction you are headed. It is essential that you go through an appropriate level of due diligence with your doctor regarding the next phase(s) of treatment. Just as you inquired about efficacy, side effects, treatment duration, and other factors prior to your first course of treatment, you need to repeat the process again now. Three very important questions to consider are:
1. what are the goals of this treatment;
2. what is the likelihood it will be successful; and
3. what short-term and long-term effects may the treatment have on my quality of life? Only once you’ve completed this process can you truly provide your physician with informed consent to proceed.
Expanding the range of clinical resources
Additional physicians may join the team to help you on your journey, depending upon the type of treatment(s) being recommended. Whereas you may initially have been treated only by a surgeon, you may now want to consult with a radiation oncologist, medical oncologist, or other specialists. These physicians may be providing simultaneous interventions. It is essential that they be functioning as a well-coordinated team, since the administration of one therapeutic regimen may affect the timing, dose, or even usage of another treatment modality. For example, patients undergoing chemotherapy may have to carefully sequence their radiation treatments so they do not overwhelm their bodies and increase the probability of adverse effects.
The stakes are higher now because the first line of medical defense has failed. The chances of having a sustained response to treatment diminish, while the level of risks, side effects, and long-term consequences of therapy may be increase.
Due diligence déjà vu
Just as you asked many questions about your initial treatment, so, too, must you feel fully informed about the next steps in your journey. In addition to understanding the fundamental nature of the recommended treatment, you may also wish to ask your physicians the following questions:
- Why might this treatment be effective when others have failed?
- Are there other options for treatment that we should discuss?
- What are the side effects or after-effects of treatment that I may experience?
- Who will perform this treatment, and what are his or her qualifications for doing so?
- Will my insurance cover the cost of this treatment?
- Where I can learn more about this treatment before agreeing to it?
It may be helpful to then take a few days, do your own research, talk with your caregiver, and then come to the most informed decision possible. Regardless of the outcome, you will feel as though you entered this phase of treatment with a solid understanding of its probable outcome, side effects, and costs.