All the wrong symptoms...

3 minute read time.

I was diagnosed in October 2020 with a Pancoast tumor in my right lung and it is my hope that this blog might help somebody recognize early symptoms and aid in getting the correct diagnostic testing early.

I am a 71 year old widow who until July of this year was in good health, hiked trails with my dogs, and had more energy than my children.  I will admit I neglected annual checkups and, in fact, didn’t even have a primary doctor at the time the pain began in July.  The pain started in the back of my right shoulder and I suspected bursitis as I had experienced that years ago. Within a few days I began having a burning sensation in the right side of my right breast and armpit.

I made an appointment with a general practitioner in early August and after a very lengthy scolding on overdue annual testing and a history of smoking he decided I had pulled a muscle or strained a tendon in the shoulder. By then I had tried every over the counter pain medication known to man with no relief so he wrote a prescription for pain and also a steroid.  I was given a list of overdue exams he wanted me to schedule that included mammogram, bone density, blood work, colonoscopy and CT scan.

The pain medication had no affect at all on my pain that was quickly becoming unbearable so I made an appointment with an orthopedic doctor who gave me an injection of cortisone and suggested massage therapy.  Massage therapy was out of the question as I was social distancing, not because of the pandemic, but the fear of anyone touching me around the right shoulder.

On arrival for the CT scan appointment scheduled for early September I was told they would not be able to do the scan because the primary care doctor had sent incomplete paperwork.  The scan was rescheduled for September 28th.

Two weeks after the CT scan I received an email from the patient portal regarding test results from the scan.  There it was...a 5.6 cm mass in the top apex of the right lung with “destruction” of the 2nd and 3rd ribs. I called the doctor’s office to see if that was standard procedure to let a patient receive that news through an email and they gave me a referral to an oncologist.

My first appointment with the oncologist was October 13th followed by a PET scan two days later that revealed the tumor at 7.5 cm.  I live in a very small town in north Florida, population 700, and the oncologist who I now consider my primary physician is twenty miles away.  He quickly referred me to a thoracic surgeon at the highly respected University of Florida Shands Hospital, 65 miles from me, for further testing and hopefully followed by surgery.

I have completed pulmonary testing, biopsies of the tumor and surrounding lymph nodes and chest and brain MRI’s.  The bronchoscopy biopsies and MRI’s concluded no spread to lymph nodes or other organs which puts my cancer at stage 3.  I am currently back with my oncologist preparing to start combination radiation and chemotherapy to hopefully shrink the tumor.

The pain is being controlled with Oxycod/acetam 10-325 mg but is still unbearable at times and now has radiated from the shoulder down the back of my right arm.  I am told radiation treatment should alleviate some of the pain.  When fighting the pain this monstrous tumor has caused I try to be mindful that without the pain a correct diagnosis would have surely come too late.

Dee

Anonymous
  • FormerMember
    FormerMember

    Hi Dee, my husband too had "all the wrong symptoms" he had right shoulder pain for over 2 years! Doctors here said everything from indigestion, pulled muscle to a possible collapsed lung... nope, big fat aggressive tumor that has already eaten 2 of his vertebrae. I would be interested in hearing how your treatments are going. 

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Blindsided, 

    My first treatment plan was radiation five days a week at the same time with chemo, Taxol/Carboplatin, once a week.  After the third radiation treatment the pain disappeared overnight.

    Five weeks into radiation I was suffering with burns and my blood counts were dropping from the chemo drugs.  My Oncologist decided I needed a month off treatment to recover.  Last week he put me on a chemo immunotherapy Keytruda treatment once every 21 days.  At this time I asked about the possibility of another Pet Scan.  He agreed and made the appointment with radiology.

    Today I met with the Radiologist for results.  He handed me a copy of before and after scans and the tumor is gone except for one tiny speck on the scan..  He said “The only way I can describe this is as an absolute miracle”.

    I live alone but I came home and told my dogs I may just out live them preventing them from becoming orphaned.  They seemed especially glad to see me so I suppose they understood.

    Here is my advice...Everyday I found something to be grateful for...I am so glad I am not nauseous, so glad I am not suffering with joint pain, so glad my radiation burns are healing, so glad I have confidence in my doctor, etc.  DON’T ever allow yourself to anticipate anything negative.   Dee