All the wrong symptoms...

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Dee1028
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All the wrong symptoms...

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

JanineT Forum M...
Hi Dee, Welcome to Grace. 

Dee, I'm sorry that I didn't publish this and your post yesterday when I wrote it. 

 

Hi Dee,

 

Welcome to Grace.  Before I forget, Grace is having our 2020 OncTalk, a live online panel discussion on early and locally advanced NSCLC.  This Saturday Dec. 5.  10AM to 12:30 Central Time.  The Agenda, The faculty info, and Registration.  It's free and the subject matter is right for you.  (more often our live faculty events focus on metastatic nsclc and sclc)  It's exciting to have enough new info to dedicate OncTalk 2020 to earlier stage disease. ! If you'd like some study material :) yeah I used to be a teacher, The Pacific trial will surely be discussed.

 

I can really appreciate that last sentence, you prob know this but usually, lung cancer isn't found unless it has spread.  My husband had a pancoast tumor that he would never have known about early.  He too didn't have a primary doc.  He even went through 5 weeks physical therapy before he got a CT, ouch.  That all started over 11 years ago.  He had chemo/rads and lots more chemo and he has been cancer free since. 

 

Thank you for sharing your story.  There's only been a couple of others on Grace who have told us about having a pancoast tumor.  Your care really isn't any different than anyone with stage 3 nsclc except for the orthopedic issues it causes and finding a surgeon with lots of experience with pancoast tumors if that's a direction you're looking at.  Today surgery for resecting a pancoast tumor usually involves more than one specialist surgeon and sometimes 3 or more.  A "dedicated thoracic" (not cardiothoracic who does heart surgery) surgeon who does a lot of pancoast tumors, a neurosurgeon and an orthopedic surgeon are all often needed. 

 

There is at least one difference in treatment options today that we didn't have 11 years ago.  If someone has unresectable (non-metastatic) nsclc the new option is to do chemo/rads with adjuvant immunotherapy.  The survival benefits are high with the immunotherapy if there is at least 1% PD-L1 expression.  A comparator study between chemo/rads with adjuvant immunotherapy and chemo/rads surgery with adjuvant something probably won't be done.  It's been impossible to complete a trial like that because so few people who can have surgery would willingly opt for no surgery.  At least some of this will be addressed, maybe updated this Saturday.

 

Don't hesitate to share your journey or ask questions.  I know you didn't ask for input but it's hard to not give a couple of insights you probably already have.  :)

 

Best of luck,

Janine

 

 

Dee1028
Dee1028's picture
Pancoast Tumor

Thank you Janine.  I am lucky to have found an oncologist in Lake City with radiation/chemo availability.  He referred me to Shands University of Florida in Gainesville (45 minutes away).  My Thorasic surgeon there has very high credentials and is in charge of lung transplants at Shands.  Even though, like your husband, I got a late start on diagnosis I feel some confidence.  Did your husband have the excruciating pain that goes with the Pancoast.  My pain began in July but the radiologist believes his treatments will help.

Thanks again,  Dee

Dee1028
Dee1028's picture
Pancoast Tumor

Thank you Janine.  I am lucky to have found an oncologist in Lake City with radiation/chemo availability.  He referred me to Shands University of Florida in Gainesville (45 minutes away).  My Thorasic surgeon there has very high credentials and is in charge of lung transplants at Shands.  Even though, like your husband, I got a late start on diagnosis I feel some confidence.  Did your husband have the excruciating pain that goes with the Pancoast.  My pain began in July but the radiologist believes his treatments will help.

Thanks again,  Dee

JanineT Forum M...
Hi Dee, I'm glad you have a

Hi Dee,

 

I'm glad you have a cancer center close by and Shands isn't very far.   We are just a mile away from D's onc, I still feel incredibly lucky to live so near compared to so many who drive hours every treatment day.  Unfortunately yes, he did have the excruciating pain in the shoulder and he was already holding his arm up by his elbow before PT.  There was destruction in his 1st  3 ribs, so close to a vertebral foramen and brachial plexus they couldn't tell, his spine is good and no horners syndrome. 

Radiation therapy really did help with the pain.  He still had pain but not the extreme 10 pain he had.  There's plenty of reason to believe it will help you too.  When is does your treatment start? 

 

Janine