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Ways To Keep Track of Your Own Symptoms and Be Your Own Advocate at the Doctor’s Office

May 17th, 2019 |

by CindyLupica | Survivor: Gestational Trophoblastic Tumor    Connect

You only have 2 choices, and choosing the wrong one could be devastating. These two choices can be life-changing, life-altering. 

“What are these two choices?” you may ask. As you’re sitting in the doctor’s waiting room, these two choices wander around in your head. The first choice is to go into the doctor’s office blindly, relying solely on your symptoms and blindly following the path that your doctor gives to you. The other choice is to go into the doctor's office with some insight, direction, and knowledge so that you can be your own advocate. 

How do you be your own advocate? Self-advocacy is looking out for yourself and  respectfully standing up for your views, opinions, thoughts, ideas, and even facts. Self-advocacy is our guard to protect ourselves. It really is our duty to be responsible and advocate for ourselves

Sometimes, however, this advocacy makes us step outside our comfort zones, perhaps even beyond our respectful zones just so we can be heard and recognized. I know. I was there. I had to do it. It was not easy but because I knew my symptoms because I knew my body and I knew something was wrong . This strife of mine lasted over 12 hours of repetitive self-advocacy and denial to leave the hospital, even after several doctors and hospital floors tried to discharge me home from the ER. I persisted that I was not leaving to go home to bleed to death. My main symptom was vaginal bleeding and hemorrhage. I also had symptoms throughout my pregnancy, 4 months into postpartum. Finally, after 12.5 hours and my persistence, my husband and I were given a diagnosis: choriocarcinoma placenta cancer from the disease called gestational trophoblastic neoplasia caused by my pregnancy that was a complete twin molar pregnancy with a surviving twin. I had lung metastasis, was high risk and began chemo immediately. Who knew, right? This cancer is also labeled  as rare,  making my advocacy even harder to be heard and taken seriously, but I stuck to it regardless.

You may know your symptoms but in most cases these symptoms can lead to many different diagnoses. I found that I had written down my ‘symptoms’ or issues on my mobile calendar, just as a little reminder, later passing it off, thinking it was no big deal. As time pressed on, my calendar was filled in more and I started to make connections between the symptom patterns. A notebook, pad, or journal is also another way to jot down notes. 

Research is another way to begin analyzing your symptoms. Modern technology makes doing research a simple task. . Resources are available on phones, computers, and tablets. Social media even gives you access to support groups that have real live people on the path that you may be facing. All of these resources are helpful and give you some understanding of your symptoms to help you have some knowledge when visiting the doctor. These resources, I must stress, should never take the place of an actual doctor! These resources are only to help AID you when you visit your doctor! In all honesty, looking up symptoms can also have a negative effect, causing more worry, distress, distractions so it is best to use your own discretion.  

When visiting your doctor, it is handy to have your calendar or notes of your symptoms. Having this information helps the doctor gather the facts to begin giving  possible diagnoses , tests, etc. The doctor can't even begin to help you unless you hand out clues, like a detective! Having a solid symptom/issue list can help you in the long run with voiding out other scenarios and tests. For me, the doctors were grabbing at anything pregnancy or pregnancy loss related, going in circles, getting nowhere. But because of my persistence and facts, they had to rule out a new pregnancy which then ruled out any type of pregnancy loss, narrowing down the mystery and diagnosis. 

During this visit, it is always good to have notes and to take notes. I learned this from my oncologist nurse. She could not stress this enough! She also suggested to bring someone with you on the visit for two ears are better than one. What you may miss, the other person might have heard. Another option she said was to bring a tape recorder or record on a device. This is especially important for those that may suffer neuropathy, arthritis or impaired vision. The recorded doctor appointment can be replayed for information at a later time. From my nurse’s advice, I went into oncology with my list of questions, concerns and issues for that week. I wrote them down as the doctor spoke. Prior to the appointment, I had already done the research for a heads-up to those possible answers. For me, I could then mentally cross off those that didn’t apply, while addressing those more concerning at the time of the appointment. It was a great help for me, especially with chemo brain in full effect. 

Knowing your body, health, symptoms and possibilities are all ways to be your own advocate. Speaking up about concerns and issues is  a great way to advocate while doing your own research to expand your horizons of knowledge. I have looked up symptoms with a specific mindset, while actually learning new things! How exciting is that? We are never too old to learn, as the saying goes. The key is to not be afraid to speak up. Have open communication with your doctors always and takes notes. Listen to your instincts, know your body and stick with it. In a case like mine, it can save your life.


Image courtesy of Unsplash

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CindyLupica's picture
Cindy Lupica is a wife, mother of four, and survivor and advocate for Choriocarcinoma & Molar Pregnancy Awareness. She is also an advocate for the Choriocarcinoma Research Fund at Brigham & Women's Hospital, where you can donate to here. You can connect with her on IHC under the username pregnancycancer_twinmolarpregnancy.