All the wrong symptoms...

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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

  • Hi Dee and welcome to the online community

    Thanks very much for taking the time to tell everyone your story with lung cancer. I'm sure people new to the group in future with a pancoast tumour will find it very useful.

    I'm sure that you'll get lots of support from the others in this group who are incredibly friendly and helpful.

    x

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     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • Hi Dee.

    I know we have spoke already, I just wanted to wish you luck with your treatment. Do you have a date yet. I had radiotherapy at the start of my treatment, and it did really help with pain and symptoms. It also shrunk my tumour by 50%. 

    Chelle 

    Try to be a rainbow,in somebody else's cloud
    Maya Angelou

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  • Thank you so much.  I was struck by the kindness of the group before joining.

    Dee

  • Thank you Chelle.  The port went in last Wednesday and the radiation simulation is this coming Monday.  Radiation will be five days a week and chemo once a week.  I met with the chemo nurse last week and she gave me printouts on the two drugs I will get, Taxol and Carboplatin.  Your kind input on radiation sure gives me hope.  I just feel like I could get back to some normalcy without the pain.

    Dee

  • FormerMember
    FormerMember

    Your story sounds similar to mine. My pan coastal tumour wasnt detected till it was too late even tho a few doctors and 3 physios didnt get onto it. I have a letter from the doctors apologising which isnt worth a  carrot. Mine has spread to lymph nodes and rib. It also spread to my brain causing a tumour which wss removed. 

    I also spent most of my time walking my dogs and working, ive had to give up work and sell my car. I had only just started my.own business microchipping pets in their homes. 

    • I wll be 56 next month and i was diagnosed last year, it upsets me that my poor dog doesnt get all the walks she used to get when i was well.
    • I am taking cbd oil and i really think that helps as i dont have any bad days lying on the couch like i was doing.
    • But i still cant do things i used to as i also have a broken pelvis with all the falls so need a frame to walk with. 
    • Im just so angry with the doctors. I have spoken to a solicitor and hope they do something about the doctors and the misdiagnosis. Apparently they have been teaching the practice to look out for the likes of my tumour.
    • I wish you good luck and hope u dont have too much pain. 
  • FormerMember
    FormerMember

    Hi dee, i am on ketamin and found that was the only thing that relieved my pain which like yours was unbearable. It might be worth asking if you havent had it already. X

  • So sorry, and all too familiar circumstances breaks my heart.  My granddaughter wanted me to look into the cbd oil but I read on the internet that it can’t be taken with some chemo drugs so I will check with the chemo nurse on that. Thank God the oncologists seem to understand the pain but it has devastated my life.  The only time I leave my home or allow anyone here is when it’s unavoidable.  When the pain peaks my two English Bulldogs sit with me looking worried and my little Scottish Terrier gets in my lap and hugs me.  Wondering if you have had the radiation treatments and did that bring you any relief.  

    Thanks for your reply.  My prayers are with you and keep in touch.  
    Dee