Do Your Homework!
Last updated: July 2020
My lung cancer was found on 1/9/19, due to having a very good primary care doctor. I had to go in to see him because I needed refills for the inhalers I use for COPD, after 50 years of smoking starting when I was about 14 years old. He had a Resident with him the day of my appointment, and after both of them listened to my lungs, he asked me if I wanted an X-ray. I said sure. Good thing, because they found a small "suspicious" spot in my lower right lobe.
Diagnosis, staging, and treatment decisions
After reading the pros and cons of each, I chose the "Cyberknife" treatments over the surgery to remove my lower right lobe, thinking it would be less invasive to my lung, which consisted of 5 treatments of radiation directed at the spot of the cancerous area of my lung, five days in a row. The only bad part about the radiation treatment was the horrible feeling of claustrophobia or panic I felt by having to wear a "mask" to protect my head, and being screwed down to the table.
One thing I did notice a short time after my treatments was I developed pain in my rib cage area on the right side. When it got really bad I visited my chiropractor and it would alleviate the pain, but it would never completely go away.
A short time later I moved back to my hometown in California to be closer to my family. I was referred by friends in the medical field to new doctors who would take over my treatment. My new oncologist ordered new PET/CT scans which showed my cancer was in remission, and I was told I would just need to go in for the PET/CT scans every 6 months, which was scheduled for June of 2020.
Pain management and new pain
In the meantime, I was also referred to a Pain Management Specialist due to the pain I had for chronic back and neck pain, and also for the pain that would not go away in my lower right rib cage. I would visit them once a month. In early January I woke up one day with severe back and rib pain. I could barely move and my back would spasm about every 30 seconds, and the best way I could describe it was "labor pains in my rib cage."
I stayed in bed for 2 weeks, only getting out of bed to go to my physical therapy appointments and also a few times to see my chiropractor. It was weird because I noticed the pain was in my back and rib cage area, but my neck also hurt sporadically. Nothing helped. On my next visit to my pain management doctor, I told them about the severe pain in the right side of my back and my right side rib cage, as well as my neck. I told them about the severe pain I was in, also telling them I likened it to "labor pains in my rib cage."
Because at the time my neck hurt also, my doctor suggested an X-ray of my neck. I said, "Will you please order an X-ray of my back also, it hurts really bad?" He said sure. Long story short, the X-rays showed I had a compression fracture of my T8 vertebrae, which showed it had been compressed to 50% of its original size. The doctors couldn't believe I had done such damage to myself and hadn't known it. I told them "I told you my back hurt!" I just considered myself lucky that the chiropractic treatments and physical therapy treatments I had hadn't caused further damage.
I had to think back to what I could have done to cause such an injury, and only remembered that one day around the time the pain started, I had lifted a 20 lb. bag of ice and tried to lift a 44lb bag of kitty litter. It took about 2 months for the severe pain to go away, but I still had the rib cage pain. At this time I started to think it was suspicious that my rib cage started to hurt shortly after the "Cyberknife" radiation treatments, and also that the vertebrae that I had fractured was in the same area as the targeted radiation treatments.
After that, I was much more careful about lifting, but in May it happened again, I refractured my T8 vertebrae again. I was in such pain that I was convinced I had fractured my ribs and not my vertebrae. I didn't do anything that could have caused a fracture again, or so I thought. My Pain Management Specialist sent me to a spinal surgeon, who told me I was probably right about my radiation treatments "frying" my vertebrae, and that the rib pain was a result of that injury and due to two muscles that are in the same area under my rib cage. He put me in a back brace.
Shortly thereafter I went in for my 6 month PET/CT scan and the new scan showed numerous new nodules in my lower right lobe, a new area of concern now in my upper right lobe, and a "ground glass" area in my upper left lobe. All of them are too small to have biopsied, so I have to wait until September, 2020, for another PET/CT scan to see if they have grown enough to biopsy.
The importance of sharing our stories
To try to make a long story shorter, in retrospect I obviously wish I had had the surgery to remove my lower right lobe instead of the radiation treatments. But I did the best I could trying to decide, with the info I could find online about both treatments, so it's hard to know what treatment is going to be the best for yourself. If I had read something like MY story, I may have thought twice before choosing, which is why I decided to "share".
My oncologist said that if these new nodules are cancerous, it will probably be a case of trying to lengthen my life instead of curing the cancer, since it can no longer be treated by surgery. I'm still trying to decide what I will choose to do, as my COPD is severe and I'm kind of DONE with all this pain.
Anyone can get lung cancer
The sad part about it is my new family doctor's mother is now going through treatment for Stage 4 lung cancer. Unlike me, she never smoked. And I even made that comment to my doctor, how it wasn't fair that someone like me had it caught at Stage 1, and how it was a shame that someone like her would get lung cancer at all. He's pretty young, I hope he doesn't lose his mother.
I'm 67 years old and just had my 7th great-grandchild, a boy. I kind of suspected that there was a reason I became a grandmother at such an early age, and then a great-grandmother, so I'd be able to experience all of that. I've had a pretty full and remarkable life.
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Beside manner matters! What has your experience been?