Dr. Robin B. Dilley, author of In A Moment’s Notice: A Psychologist’s Journey with Breast Cancer and a licensed psychologist.
For those of you who have been treated traditionally by oncology and radiation therapy you may identify with the awkwardness felt when that day of discharge from the oncologist finally came. Now, that “discharge” is being re-examined and explored positive by the Commission on Cancer.
This morning I was listening to Dr. Andrew L. Sainer talk about cancer survivorship treatment. Dr. Sainer is the director of Helen and Harry Gray Cancer Center in Hartford Connecticut. In his short eight- minute audio he covered some very important facts and spoke of the Commission on Cancer. The Commission on Cancer is an important and clearly missing piece of this post treatment puzzle. There are current 14 million Americans living after a cancer diagnosis. 2/3 of that number will survive five years without a recurrence. This rapidly growing population has unique needs that have never been addressed by the treatment team because there has been no team.
For instance, in my case, my oncologist acted as the hub of my treatment for the first five years and because I continued on the estrogen receptor blocker, Femara for an additional five years I continued to see my oncologist twice a year. Then I was discharged. Ten years is a long relationship. It was during a follow-up mammogram that my radiologist said to me that she did not relax until a patient was 15 years out. I remember thinking to myself. “Really? I have to still be on guard.” And sure enough 15 years to the month the ultrasound tech hung—out for a significant amount of time right over my nipple. When I asked her what she was finding, she said, “Something very small.” The radiologist came in and took over the ultra-sound equipment and told me “IT” is very small. Let’s look at “IT” again in three months. This was a different radiologist than the one I had seen previously. I sat up from the table and said, “Maybe you didn’t notice my right breast is missing. I am a cancer survivor. I am not waiting for three months to recheck.”
The good news about this story is that I did follow-up with my former surgeon and had a left mastectomy. The “IT” was DCIS and it was contained (meaning IT had not spread to my lymph nodes). No follow-up was recommended. Again, I initiated a follow-up with my former oncologist. So the fact that the Commission on Cancer is going to provide every cancer patient/survivor with education and comprehensive care by the end of 2015 is quite impressive. What will that include?
First it will include better education to the survivor. The education will include:
- Knowledge about the disease and therapy
- Possible late effects of therapy
- Surveillance of recurrence
- Screening for new cancer
- Risk-reduction lifestyles
The Commission on Cancer believes the patient should be empowered with knowledge and not be lost in the transition from treatment to survivorship. I can attest to that feeling after discharge is a powerless one filled with a loud echo of “Now What?” Thus this important word, “survivorship” is now on the Cancer Control Continuum of Care.
Survivorship Care Issues will include a team approach that will include a psychologist or social worker, assessment of rehabilitation issues, late-effects intervention, wellness strategies, and proper transition to your primary care doctor. Each patient should receive a personalized plan of wellness guidelines that include the promotion of physical activity, diet, and body weight. This plan will be discussed with the patient and the family and with primary care physician.
It is my opinion that each of us need to responsible for our medical treatment and follow-up and not leave these important decisions to an over-utilized, over-worked, and under-served medical machine. However, most of you know doing treatment of any sort is exhausting, mentally fatiguing, and so overwhelming that just getting through it is the only goal at the moment. But, as treatment draws to a close and energy begins to return it is important to turn your attention and energy to the “what-now?” Once you are in the survivor phase of treatment what is it that you need to do differently to enhance the quality of your life now?
Even though, there is some discussion over the use of the word “survivor” shall we put that aside for now and realize that as a person who has had cancer in the past, we are on a continuum of care and caring for the self, as a survivor is equally important. Unfortunately, cancer is never in the past tense for those of us who have been through-it, but the phase of survivorship treatment needs to be celebrated in life-enhancing choices. Live well today my friends and fellow survivors.
Dr. Robin B. Dilley, author of In A Moment’s Notice: A Psychologist’s Journey with Breast Cancer is a licensed psychologist in the State of Arizona. Her eclectic practice allows her to cross diagnostic barriers and meet clients in their need assisting them to respond to life in healthy and empowering ways rather than react to life’s circumstances.