When a person receives a cancer diagnosis, their medical universe is changed forever. In my own case, I had a primary care physician who was there to help me at every step. She is the one who set up referrals for the testing facilities, surgeon, oncologist, radiation oncologist and plastic surgeon. And it was my surgeon who was responsible for selecting the anesthesiologist with whom he would be performing my surgeries. However, while my team was set to take care of my disease and physical needs, no one ever considered the mental issues that I might have to deal with, let alone how such a diagnosis might impact my caregiver. That is why I decided to team up with Med-IQ to help generate awareness around distress and anxiety for patients and caregivers. Med-IQ is an accredited medical education company that provides an exceptional educational experience for physicians, nurses, pharmacists, and other healthcare professionals.
Every single cancer patient’s experience in dealing with the distress of their diagnosis is as unique as their fingerprints. Although cancer-related distress is usually defined in terms of feelings of sadness, hopelessness, powerlessness uncertainty, guilt, etc., each person’s feelings are totally individual. A patient’s feelings may affect them on the mental, physical, social and/or spiritual levels that will make dealing with their diagnosis and treatment even harder for them.
How these feelings of distress manifest in a patient may vary in so many different ways. They may range from sadness, fear and helplessness to anger and feeling out of control. They may result in poor sleep, appetite or concentration or even depression, anxiety and panic. The list goes on and on. And for many, concerns about your partner, children, other family members, work, finances, etc. will become a primary focus, which can become overwhelming while trying to deal with all of the aspects of the cancer treatment.
Because of the trauma that I experienced from my domestic abuse, I thought that I had everything under control thanks to my previously learned coping skills. At work, I told no one other than my immediate supervisor and the human resources representative about my cancer diagnosis since they needed to know because of the time away from work that I would need for treatment. I requested that my husband not share with anyone in his family as I did not want to answer any of their questions or deal with any of their input about my choices. And since I felt that there was nothing that my sister, who lives in another State, could do to help and because our brother was dealing with his own advanced kidney cancer, I decided not to share anything with them until after my first surgery was completed. Boy, have I learned so much since that first surgery about how to handle things.
When I was diagnosed a second time, it was my husband who came to the rescue as he realized that it was not a good thing for me to be keeping everything inside. He knew that I liked to write, so he suggested that I do just that and he would find a way to share those writings. That’s how my blog site was born. And thank heavens that he did because my situation was about to become worse. Just a few weeks before my double mastectomy and start of my reconstructive surgery, my brother died on the operating table of a heart attack during his 12th cancer-related surgery. My doctor’s way of helping me to deal with the resulting anxiety that I experienced was to put me on blood pressure and anti-anxiety medications.
No one can tell a cancer patient or their caregiver(s) what is best for them to do in dealing with a major medical diagnosis like cancer. What works for one person may be completely objectionable to another. Therefore, I have been a strong proponent for years of adding a professional to each patient’s medical team who will be there to help find ways to deal with the distress that will result on some level for every single patient and caregiver. Such professionals have received the training to assist patients and caregivers in dealing with all of the feelings and issues that they are facing. They have worked with many others who have dealt with such issues and can either help directly or provide referrals to groups, agencies and/or other professionals to help with whatever may arise.
This is the reason that I tell my story. I have been on a mission to educate those in the medical community that we need to treat the patient and not just the disease. Every single patient and their caregiver(s) need to have the tools to deal with the impact that such a diagnosis will have on each of them on a personal basis. I do have great respect for the enormous strides that are being made in treating cancer on the physical basis, as evidenced by the daily postings on my site of information relating to this research that patients/caregivers can take to their medical teams in order to enhance the doctor/patient relationship in shared decision making. But, we shouldn’t stop there. The mental impact of dealing with cancer will last long after the physical scars have healed, as any cancer patient can tell you. It is time to give patients and caregivers the same level of help and tools in dealing with the trauma of a cancer diagnosis so that they can have the same level of conversation and interaction with a trained team member who can help them to deal with their personal distress and emotional issues in order to live a better life.
Disclaimer: I was compensated by Med-IQ through educational grants from AbbVie, Astellas, and Genentech to write about managing distress for cancer patients and their caregivers. All opinions are my own.
Barbara Jacoby is an award winning blogger that has contributed her writings to multiple online publications that have touched readers worldwide.