Be Your Best Skin Cancer Advocate: Tips for Effectively Advocating
When I was younger and more naïve, I used to go to the doctor like I was riding in the passenger seat of a car. Basically, I was just along for the ride. That is no longer how I manage my healthcare, especially my skin cancer.
Establishing a relationship with a new provider
In March 2022, I had surgery for a dysplastic nevi. About a month later, I went to see a new internal medicine doctor to establish care. During our discussion, I mentioned to the doctor that in 2018 I had recurrent clostridium difficile (“c. diff.”) (an infection of the large intestine caused by the long-term use of antibiotics which can be difficult to get over. I ultimately had to have a fecal transplant and was told that I should likely never take additional antibiotics).
Was he actually listening?
Ten minutes later, the doctor was looking at my skin surgery wound, and he said, “It’s infected. It does not look good. I am going to prescribe you an antibiotic to take.” I responded and reiterated, “I have had recurrent c. diff., it was very difficult for me to get over, and I am not supposed to take additional antibiotics unless it is a critical health issue.” He paused a moment and then and responded, “You are right. I will not give you an antibiotic. I am sending you back to your surgeon for further treatment, and you need to be seen today.”
I'm glad I said something
I was seen later that day by the surgeon, and she determined that my chest wound was not infected and no treatment was necessary. My wound had split apart, but it was not infected. I did not blame the internal medicine doctor for the near misstep, but I am glad I was paying attention and spoke up before I took an antibiotic, which could have caused me to have a recurrence of c. diff.
Being my own best advocate
Skin cancer, like any other chronic health condition, is managed best when the doctor, a dermatologist primarily, and the patient are working in tandem. There are several benefits to being your best advocate when managing your skin cancer. For me, the greatest benefit to taking an active role is that I feel like I am engaged in the process. I also feel like the dermatologist and I are working together as part of a team. Playing an active role in my skin cancer management and treatment also helps me feel less out of control with my skin situation.
Below is a list of best practices that will hopefully help you improve your skin cancer self-advocacy skills
At a minimum, try one or two of the best practices, and see if you do not feel more positive about your active role in managing your skin cancer.
Have a dedicated skin cancer notebook
Prior to any appointment with your dermatologist, write out all the questions you wish to ask at the appointment. Those of us who manage skin cancer are nervous when we meet with our dermatologist, and this especially the case when the office visit involves a skin check. Having your questions in one specific notebook will help keep you organized and allow you to look back in the future.
Go to your appointment with a working knowledge of the issues
Before your appointment, do some basic on-line research and make yourself a more informed patient. Reputable healthcare websites, such as the Mayo Clinic and skincancer.net, provide accurate, reliable information. When you do some homework before you meet with your dermatologist, you put yourself in a position to ask more meaningful questions.
Be open and honest with your dermatologist. Your dermatologist cannot read your mind, and he does not know where you are coming from unless you let your voice be head. Your dermatologist cannot help you to the extent of his abilities unless he has all the cards on the table. Communication between you and your dermatologist is vital to effective treatment.
Ask questions and seek clarification
If you are unclear about what is said or done during your visit with the dermatologist, speak up and ask him. Be sure you understand what the dermatologist has said during each visit.
If necessary, ask follow-up questions
At a minimum, be sure to clarify what the treatment plan will be at each office visit. It may not change from visit to visit, but be sure to have that conversation regardless. It only takes a second for you to ask, “So, are we still planning to do skin checks every six months?” That question opens the door for the dermatologist to respond regarding the plan.
Ask for more information
If your dermatologist mentions a new treatment or diagnosis he is considering for you, ask if he can provide you with a pamphlet or direct you to an appropriate website for more information. Likely, your dermatologist will be delighted you are seeking more information and be happy to provide you with more information or direct you to further information.
Be a member of the team
It is important to collaborate with your dermatologist to manage your skin cancer. It is not your dermatologist’s role to address your skin cancer alone. Be proactive and assume an active role on your skin cancer management team.
Self-advocacy is a journey
We make small steps forward and then work to improve on that. A dermatologist can manage and treat your skin cancer most effectively when you advocate for yourself and meet him halfway. You and your dermatologist are a team, where both participants have an active role. After all, you are both dedicated to managing and treating your skin cancer in a manner that provides you with the best quality of life.
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