getting diagnosed

Knowledge Is Power: Be Your Own Health Advocate

“There is no wealth like knowledge, no poverty like ignorance.” Buddha

“There is no wealth like knowledge, no poverty like ignorance.” Buddha

Knowledge is power, but information can be a double-edged sword.

After I was diagnosed with cancer, I was told not to dwell on the statistics.

I was told everyone responds differently, and endlessly researching every symptom and potential outcome will only increase my anxiety.

 I believe the same advice applies now too.

When you are dealing with life and death scenarios, information is critical.

Cancer taught me that the right information at the right time can make all the difference.

But can you ever really trust all the information that you read?

Can you ever really be sure you aren’t taking someone else’s opinion as fact?

No, I don’t believe you can.

That’s why you should always trust your gut.

Trusting my gut and constantly pushing for answers is a big reason I believe I am still here.

My cancer journey and numerous health challenges have taught me that we should always respect doctors, nurses, and health professionals, BUT you always have the right to disagree.

Never be afraid to get a second or third opinion.

There is absolutely nothing wrong with questioning a medical professional who offers health advice because it is simply just that—ADVICE

No two doctors are necessarily going to give the same advice to a patient.

It’s important to always keep an open mind regarding the information and facts as they are presented.

Health can be subjective.

There is not always one answer to every issue.

There is no one-size-fits-all approach to health.

What works for one person won’t necessarily work for everyone. 

Medicine requires a lot of trials and errors to get it “right.”

To understand how the information applies to your life, you should always run the “facts” through your body’s other brain: your gut.

Your gut is the final test.

You know your body best.

Does something feel off?

Always trust your instincts.

If I didn’t trust my gut and push for a surgical biopsy as soon as I discovered the swollen lymph node in my neck, I don’t know where I’d be today.

If I didn’t thoroughly read my labs, scan results, and seek out independent consults, you might not be reading this right now. 

Always be your own health advocate.

Now, more than ever, you have all the information you need at your fingertips to empower your health decisions.

Take the time to understand how your immune system works.

Don’t be afraid to read and research your condition or symptoms in medical journals.

You should always be allowed to ask questions.

Any medical professional who encourages you NOT to ask questions, or who criticizes you and tries to discourage you from researching things for yourself, is not being professional.  

You shouldn’t feel rushed to decide about treatment, even when your health problem is severe.

Second opinions are critical:

  • When the diagnosis is cancer

  • When surgery is recommended

  • When the diagnosis or treatment is unclear

  • When the patient is your child

  • When you want peace of mind

Always remember, your diagnosis is not always correct.

 Many studies show second opinions often result in a completely new diagnosis:

 A 2017 study of over 200 patients by Mayo Clinic found that 88% of patients looking for a second opinion, left with a new or refined diagnosis. 21% of the people left with a “distinctly different” diagnosis.

 Another controversial study conducted by researchers at Johns Hopkins Medicine in 2016 estimated that more than 250,000 Americans die each year from medical errors—making errors the third leading cause of death behind heart disease and cancer.

Be your own advocate. 

You’ll never regret getting a second opinion. 

Staying informed about your diagnosis and the possible treatment options helps ensure you will walk away with the best treatment plan possible.

 

Sources:

Yale Medicine

Mayo Clinic

Johns Hopkins University

Visit my Resources page for more blogs and other resources to help support you and your loved ones during your cancer treatment and beyond.

 Learn more about The Hopeful Warrior Project.

To the Doctor(s) that Misdiagnosed Me:

Throughout history, doctors have often been looked up to as gods for their ability to heal others. But even the best and brightest people make mistakes. Upon graduating from medical school doctors take a Hippocratic Oath professing to “first do no h…

Throughout history, doctors have often been looked up to as gods for their ability to heal others. But even the best and brightest people make mistakes. Upon graduating from medical school doctors take a Hippocratic Oath professing to “first do no harm”. But in certain cases, it is believed by many doctors that it may be better to do nothing rather than intervening and potentially causing more harm than good. As patients, here are 5 things we would like you to remember before you diagnosis us.


To the Doctor(s) that Misdiagnosed Me:

In my 30 plus years on this planet, I’ve been the unfortunate witness to the wide spectrum of care that exists in the medical field. As a cancer survivor, and after personally dealing with several chronic medical conditions myself, as well as both my daughter’s and husband’s serious medical conditions (heart surgery and brain surgery), both which required almost immediate life-saving surgical intervention upon diagnosis, there are 5 important things that I would like you to keep in mind when diagnosing a patient or a member of their family with a potentially life-threatening illness.

1.    We are beyond scared. Please be patient and kind. We may be just another patient on your schedule or a last-minute appointment that got added to your day, but please keep in mind patients often seek out the best medical experts when we are in life or death situations. We are scared for our lives. We want reassurance and false hope if necessary, to get us through this difficult time. Please remember to see us as fellow humans first. Patients second. 

 

2.    We are more informed patients thanks to Google and other online resources. Thanks to technology, I now walk around with 24/7 to my complete medical history for the last 4 years of my life. I have access to every blood test, scan and test result you can think of. I also have access to medical research articles and you’d be surprised by the valuable medical information you can get from Facebook and other online support groups filled with other’s going through similar health struggles. Please respect my ability to research my medical condition and listen with an open mind to my concerns regarding my health.

 

3.    By the time we are coming to see you, we have likely consulted with numerous other doctors and specialists. As moms and wives, we are often the ones in the family who are often on the frontlines of our families’ medical struggles. We manage the appointments and research the best doctors and specialists we feel can best help us. Please see as us more than as an unnecessarily worried, anxious, stressed ‒or worse a hypochondriac, a person who has an irrational underlying fear or belief of having a serious disease without medical evidence to back up their symptoms. Sometimes fears are valid. Sometimes it is CANCER or the worst possible scenario so all options should be explored until a valid theory is reached.  Sometimes symptoms can’t be explained with routine tests.  Please take the time and have the patience to get to the root cause of my issues, rather than simply prescribing me a prescription and calling it a day or dismissing my concerns as simply “in my head” and that “I’m simply stressed or depressed” and should seek out some ways to reduce my stress levels.

 

4. “Statistical improbabilities” exist. I’m one of them. As a cancer survivor, I’m a walking medical statistic and so is my daughter and my husband. No matter how outrageous my claim or statistically unlikely based on your initial assessment, realize that the human body is a mysterious and complicated machine and although you are extremely well-educated and highly trained, even the best doctors overlook symptoms and miss diagnoses. Please dig deeper and don’t settle for the first, easiest explanation you come across. If something doesn’t make sense, please continue to investigate.

 

5.    I’m trusting you with my life or the life of my loved one.  As humans, most of us are on the cusp of life and death all our lives and may never realize it. But as a mom to a child born with a congenital heart defect, a husband who had a serious brain malformation and now as a cancer survivor myself, I understand first-hand how fragile life can be. However, I also believe in miracles and the incredible power of people like you to help fix our broken bodies and uplift our spirits by giving us the power to have hope even in our worst times. Hearing you or someone you love has a life-threatening diagnosis is almost indescribable. But as a patient, what matters MOST are the words that come next. I’ll never forget hearing the words from my Ear, Nose and Throat Specialist on November 27, 2017:

You have Hodgkin Lymphoma. This is a type of cancer that starts in your white blood cells which are part of your immune system. However, this is extremely treatable cancer. Even curable in a lot of instances.

When I first met with my oncologist who specializes in my type of lymphoma cancer. One of the first things she did after explaining my diagnosis, was to compassionately look me in the eyes, hold my hand and tell me, “My job as your doctor (and a mother myself) is to cure you.” I believe her conviction at that moment was instrumental in helping me have the courage to go through with pretty aggressive 9 months of cancer treatment. And thankfully I did because I’m now in remission, largely to my doctor’s clinical trial and the trust we established during my initial consultation. Please remember that you are giving more than a diagnosis. You are sometimes giving a life-changing label, one that once spoken out loud by an esteemed medical professional can be quite unforgettable and even damaging‒ whether or not it is correct. Please also be careful with how you explain our diagnosis. As a patient and the mother of a patient, I want the good, bad and ugly. I want to be prepared by educating myself on all possible outcomes so I know what to expect. And remember, if you don’t tell me, I’ll probably just look it up on online anyway.



The Hippocratic Oath:

I swear by Apollo the physician, and Asclepius, and Hygieia and Panacea and all the gods and goddesses as my witnesses, that, according to my ability and judgement, I will keep this Oath and this contract:

To hold him who taught me this art equally dear to me as my parents, to be a partner in life with him, and to fulfill his needs when required; to look upon his offspring as equals to my own siblings, and to teach them this art, if they shall wish to learn it, without fee or contract; and that by the set rules, lectures, and every other mode of instruction, I will impart a knowledge of the art to my own sons, and those of my teachers, and to students bound by this contract and having sworn this Oath to the law of medicine, but to no others.

I will use those dietary regimens which will benefit my patients according to my greatest ability and judgement, and I will do no harm or injustice to them.

I will not give a lethal drug to anyone if I am asked, nor will I advise such a plan; and similarly I will not give a woman a pessary to cause an abortion.

In purity and according to divine law will I carry out my life and my art.

I will not use the knife, even upon those suffering from stones, but I will leave this to those who are trained in this craft.

Into whatever homes I go, I will enter them for the benefit of the sick, avoiding any voluntary act of impropriety or corruption, including the seduction of women or men, whether they are free men or slaves.

Whatever I see or hear in the lives of my patients, whether in connection with my professional practice or not, which ought not to be spoken of outside, I will keep secret, as considering all such things to be private.

So long as I maintain this Oath faithfully and without corruption, may it be granted to me to partake of life fully and the practice of my art, gaining the respect of all men for all time. However, should I transgress this Oath and violate it, may the opposite be my fate.

Translated by Michael North, National Library of Medicine, 2002.


Sources:

The Hippocratic Oath

https://www.nlm.nih.gov/hmd/greek/greek_oath.html

Myth or Fact: Is "First Do No Harm" Part of the Hippocratic Oath?

https://www.thoughtco.com/first-do-no-harm-hippocratic-oath-118780