Patient self-advocacy is one of the most important skills I’ve learned as a cancer patient. Thinking back on it, I may have learned it accidentally. But I am purposefully writing about it because it is essential for getting better medical care, yet it is easy to overlook when you are caught in the tumult of a cancer diagnosis.
How I Learned Patient Self-Advocacy
I’ve always been curious and eager to learn new things, so when I was diagnosed with breast cancer I began reading about it. I researched my type of cancer and the treatment options. Ironically, the information was therapeutic. I felt empowered. I didn’t know why I had cancer, but I was learning what I could do to help myself.
As I dug deeper, I discovered that the FDA had recently approved a drug called pertuzumab (Perjeta) as a neo-adjuvant treatment for early stage, locally advanced breast cancers that are HER2 positive.
That was me! I fit that description! I was getting neo-adjuvant treatment for an early stage breast cancer, and my cancer was HER2 positive.
When pertuzumab is added to taxotere, carboplatin and Herceptin — the regimen that I was already getting — chances of a pathologic complete response (pCR) increase. A pCR is when there is no cancer present in the breast tissue or lymph nodes at the time of surgery, and obtaining this outcome improves your prognosis.
As you can imagine, I was super excited to discuss this with my oncologist! When I told him about it and asked him if I could add pertuzumab to my regimen, he told me that the FDA had approved it 30 days before and my insurance company might not cover it. I insisted, but he replied that he was giving me the standard of care established by the NCCN Guidelines. Pertuzumab was not the standard of care.
I accepted his decision, even though it didn’t make sense to me. Doesn’t the standard of care change as new treatments are discovered? What if pertuzumab became part of the standard of care down the road? And why was he assuming that my medical insurance would not cover it?
As I thought about my kids, my husband, my parents, my siblings — all the people I love and who love me back — I realized that I owed it to them to make sure I was getting the best treatment possible.
I decided to get a second opinion.
Believe me, it would have been easier to just let the tide take me where it may, but I did not want to have any regrets. I traveled to California to meet with an oncologist at UCLA. I didn’t tell her what my local oncologist had recommended because I wanted her unbiased opinion.
Guess what she said?
She recommended taxotere, carboplatin and Herceptin plus the new drug — pertuzumab!!
And you know what else happened?
In May 2014, neoadjuvant pertuzumab was added to the standard of care by the American Society of Clinical Oncology!!
In retrospect, I am so glad that I dug deeper because I did in fact achieve a pCR. I also learned that I am my best advocate.
Tips for Patient Self-Advocacy
Over time I’ve learned a few things about advocating for myself that I think are worth sharing.
1. Be informed about your condition, standard treatments and treatments that are in the research pipeline.
Even if you completely trust your doctor, stay abreast of the research and drug developments to make sure you are getting the best care. Review your lab/test results, and keep copies. You should also understand your medical insurance coverage.
2. Select doctors whom you can trust and are willing to consider your perspective.
Most doctors will not be offended if you politely question their recommendations, ask about what you’ve learned through your research, or seek a second opinion. If they are upset by this, then it might be time to look for a different provider.
3. Take a trusted person to your appointments.
This person should take notes for you, and help you interpret the information. So much gets covered during medical appointments, that it is very easy to miss or forget something. This is especially true early on in your diagnosis when your thinking is clouded by emotions and confusion. To this day, I ask my husband to accompany me to any appointments where I know we will be discussing important treatment decisions.
4. If you disagree with your doctor, present your argument politely and professionally, but be assertive.
Being informed will really help with conveying your argument to your doctor. Not only will you be able to express yourself better, but your doctor will take note that you have spent time learning and thinking about the issue. Be aware of your body language and tone of voice so that you don’t appear combative.
5. Be persistent.
At some point, you may face resistance — especially when dealing with your medical insurance. You will have to find ways get your point across. I have found that this usually involves asking somebody else to support my argument. If resistance is coming from your doctor, you may have to consult your provider’s nurse, ask a loved one to present your case, or get a second opinion from another doctor. If the resistance is coming from your health insurance company, you may need to speak with a supervisor or somebody with more authority.
If at some point you are too fatigued to advocate for yourself, consider asking a trusted friend or family member to help with this. Also, a professional patient advocate may be able to help. The Patient Advocate Foundation provides assistance when dealing with insurance companies, employers, and creditors. Hospitals and medical centers often have advocates who can help you understand your diagnosis and your doctor’s recommendations.
Ready to Ramp Up Your Patient Self-Advocacy Skills?
The National Coalition For Cancer Survivorship (NCCS) has a great resource page for patient self-advocacy. They offer a free audio program called the Cancer Survival Toolbox, which helps develop specific self-advocacy skills. Even if your diagnosis is not recent or if you’ve finished treatment, this is a great resource for learning how to be more in control of your medical care. NCCS has also published Teamwork: The Cancer Patient’s Guide To Talking With Your Doctor which is available here as a paperback and here in the Kindle Edition. Both the toolbox and the guide book are useful resources for learning communication and self-advocacy skills!
I hope this inspires you to take an active role in your treatment and future medical care! If you have any questions, let me know in the comments below.
Until next time,