Has Your Doctor Misdiagnosed Cancer – How To Regain Your Health
Has your doctor misdiagnosed cancer ? I wanted to share how to regain your health and peace of mind after struggling to get the correct diagnosis. Just to be clear. I am not a medical professional. I’m sharing my story in hopes that it may help someone.
Do I Have Symptoms Of Cancer?
Over the past 11 years, I’ve dealt with a wide variety of health issues. I always felt as if they were all related in some way. Most of my symptoms began shortly after having our son, Gunner. Nerve damage and neuropathy left me unable to use my leg for 6 months after Gunner was born.
Two years later, due to severe heart palpitations I went to my cardiologist. After testing, the doctor confirmed my heart was fine. My diagnosis was severe anemia. I was instructed to schedule an appointment with my OB/GYN. I went on to have a partial hysterectomy, after a failed uterine ablation.
Over the next few years, I continued to have severe digestive problems. My stomach issues were so bad. I could barely eat or even keep down a few sips of water. My gastroenterologist did a scope of my stomach. A benign tumor was discovered in my lower stomach. The gastroenterologist told me he had never seen anything like it in his 29 years of practice. He diagnosed me with severe IBS. I was told to take a probiotic daily to help with my symptoms. A year later, I was blindsided by a kidney stone blocking my right ureter. Surgery was necessary to remove the kidney stone.
During this time, I put all my efforts into living a healthy lifestyle. My eating habits were the best they had ever been. My quest was to consume clean, whole foods. You can’t feel good if you fill your body with fake food. I eliminated processed foods, alcohol, caffeine, plus exercised daily. Despite my best efforts, I couldn’t lose any weight, not even a pound. My digestive symptoms persisted.
Then in 2014, our youngest son Gunner was diagnosed with leukemia.
Coping With Cancer
Our world came to a stop. All my energy went to caring for him. Endless medical appointments, long hospital stays, and stress took it’s toll on my health. As my symptoms progressively got worse, I just pushed them aside. Gunner was my main focus. In 2018, after 3.5 tears of daily chemo Gunner finished treatment. I was excited for our new normal. A chance to rebuild our lives. The ability to focus on becoming whole and healthy again as a family. A short 9 months off treatment, Gunner’s leukemia return.
Over the next year, we were in the hospital more days than home. Extreme amounts of chemo were given to save his life and get him into remission. All the while, my symptoms got to the point where I couldn’t ignore them any longer.
In early 2019, I went to the doctor for heart palpitations, severe fatigue and shortness of breath. My joints were also very sore and stiff. I had tingling and pain in my hands and feet, similar to how I felt after Gunner was born. My hair had started falling out in hunks. Tests were ordered. As abnormal or borderline abnormal results would come back. They would always lead to more questions and tests. My doctor proclaimed…. I was a medical mystery.
Finally, a blood test reveal a positive ANA test for lupus. Finally a diagnosis….. wrong! After a visit to the specialist, I was cleared from having any auto immune disorder. After returning to my primary doctor, she was convinced I was dealing with something very rare. She casually mentioned possibly a carcinoid tumor.
A carcinoid tumor is cancer with limited treatment options, or essentially none if the cancer has spread. Usually, the prognosis is grim. As I researched the diagnosis, I was paralyzed with fear.
How Does Cancer Show Up On A PET Scan?
During this time, I was sent to an endocrinologist. She strongly felt I had a pheochromocytoma. A pheo is a tumor on your adrenal glands. That tumor secretes hormones that effect your heart rate, blood pressure, and a host of other functions in the body. Removal of the tumor is a quick fix. Most patients return to normal after surgery. The symptoms of a carcinoid tumor and a pheochromocytoma are very similar. The main difference is a pheo is almost always benign(non-cancerous). A PET scan was ordered to confirm the presence of a tumor on my adrenal glands. My PET scan was easy. A radioactive drug is given through a vein. Then, the scan will reveal if your cells are more active than normal to reveal potential cancerous activity in the body.
The results came back from the PET scan showing no tumor anywhere in the body. Great news!! The PET scan also revealed no pheo on my adrenal glands. The only thing shown on the PET scan was a pooling of the tracer medicine in two areas of my colon. A colonoscopy was recommended to further investigate.
How Long Can You Have Cancer Without Knowing?
So what was causing all of my symptoms? After a meeting with my primary doctor, she once again suggested carcinoid tumors could be in my colon, causing the PET scan results.
At this point, my heart palpitations were severe and waking me up during the night. Just walking or even talking would leave me short of breath. Sitting on the couch, my heart raced as if I was running a marathon. My joint pain, muscle weakness, and pain in my hands and feet left me unable to function some days. Junior would have to help me walk from the bed to the bathroom. In the mornings, I was so unsteady on my feet. Most days even holding my cell phone was unbearable from the pain.
My next step towards a diagnosis was a colonoscopy. Due to the coronavirus, no doctor on Florida’s Space Coast would see me. I was offered a virtual appointment for a consultation. The first available was in JUNE! In a moment of desperation and lack of response from the endocrinologist on my next step of action for a diagnosis…. I began to pray.
What Do You Do When The Diagnosis Is Wrong?
Never give up if you feel your doctor misdiagnosed cancer. I felt lead to text one of Gunner’s old oncologists who worked in Orlando. He had since moved on to a new hospital in Tampa. The only contact information I had for him was from in 2018. He called on his cellphone when Gunner relapsed. Did he even still have that phone? Was it returned when he resigned from the Orlando hospital? Would he feel my text was out of line or invasive of his privacy?
I text him and within 5 minutes he responded. His friend, Dr. Bornstein, a pediatric gastroenterologist recommend his friend, Dr. Mayoral in Orlando. I called Dr. Mayoral the next morning. Their office staff arranged for me to be seen that day. Within 5 minutes of my appointment with Dr. Mayoral, he knew exactly what was wrong with me. Lab results confirmed his suspicions and praise God… he was right.
After 11 years of searching for answers, I don’t have a carcinoid tumor or terminal cancer. I have a severe B12 deficency caused by pernicious anemia. Pernicious anemia is an autoimmune disorder caused by the bodies inability to absorb B12. B12 is critical in the production of red blood cells. Pernicious was a fatal disease for many years. Thankfully, medical advances has provided an effective treatment method for this type of anemia. I will require injections for the rest of my life. I’m happy to report after just one week of injections I feel much better. However, the sad reality is I mostly likely have irreversible nerve damage due to my delayed diagnosis over the past 11 years.
How Do You Cope With A Medical Diagnosis When Your Doctor Misdiagnosed Cancer?
My three sisters have been a tremendous source of support along this journey. Kelly, my oldest sister has been a hospice nurse for 20+ years. She just recently took on the role of Director of Nursing. My second oldest sister is married to a very accomplished vascular surgeon. Last but not least is my baby sister. She doesn’t have a medical connection but has always been my confidant, constant cheerleader, and has lifted me up in prayer.
All three endured endless phone calls from me. I hoped a conversation about my symptoms, lab results or a doctor’s visit, might spark a thought to help figure out my medical mystery.
At my darkest hour – I resigned to the fact that I would have a heart attack before receiving a diagnosis.
The thought of not living to see our son finish his cancer treatments, our second oldest daughter graduation high school, our kids get married, or the ability to grow old with my husband was to much to bear. The list is never ending.
At night when I struggled to sleep from excruciating nerve pain in my hands, feet, hips, and lower back… I would emotionally spiral out of control. These feeling would ignite me into a feverish panic to push harder for answers. I wanted to be healthy again for myself and my family.
Read below for tips on how to receive a proper medical diagnosis, how to advocate for yourself, and how to regain your health and peace of mind after a medical diagnosis.
How Is Cancer Diagnosed?
Cancer is diagnosed by lab tests, and/or a CT/PET scan. Your doctor will accumulate an overview of your symptoms, lab results, and scans to make a proper diagnosis.
How To Advocate For Yourself?
• Journal your daily symptoms
• Keep copies of all lab work and medical tests in a folder. Take your medical folder with you to each appointment.
• Document your family history. Does thyroid cancer run in your family? Does your mom, aunt, and Grandma all have a history of issues with their heart valves? This is all very important information the doctor needs to hone in on what can be the root cause of your medical issues.
• Research online all medical diagnosis from your doctor. Read the symptoms associated with your disease diagnosis to become knowledgeable about your own health.
• Feel confident when sharing concerns with you doctor. You and your doctor play a critical role sharing information back and forth to confirm the correct diagnosis.
My doctor would say, “I suspect you have xyz… or the cause of your issue is xyz.”
When you are knowledgeable about your symptoms, you can respond with confidence. “I do have these symptoms typically associated with diabetes. What could be the cause of my shortness of breath?”
•Follow up on lab results, testing, and scheduling appointments. Depending on the lab or test performed, 3-5 days is sufficient time to receive results. If you haven’t heard from your doctor, call them yourself. It is common for medical follow up care to be disrupted. Don’t feel bad or bothersome. Call your doctor to inquire about results or treatments plans.
How To Regain Your Health And Peace Of Mind After A Doctor Misdiagnosed Cancer
1. Stay hydrated
2. Take all medicine exactly as prescribed to you by your doctor.
3. Eat healthy and nutritious foods
4. Move your body – respect the limits of your current health. That might mean move around in your house a little more than the day before. Then, progress to a short walk outside. The key is to move a little more each day.
5. Get Plenty of rest
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