I made some errors in my first essay on this topic and I hope I have managed to correct them in this rewritten version.
After my wonderful experiences with my non-caring, and it's "all in your head" doctor, I did locate a fine Internist. He was also a nice person. Go figure.
I had another complete physical. Had another chest X-Ray. Everything looked good. I had low BP, good cholesterol readings, good kidney and liver function. Only problem was the Radiologist did not like what he saw on my chest X-Ray.
My internist ordered a CTScan of chest with contrast. The radiologist did not like what he saw on my CTScan. He suggested a repeat Scan in 3 months.
In Oct. of 2004, I have a repeat CTSCAN as I was instructed to do.
Results of second CT are frightening to me. I have lesions in my lungs which have increased in size, prominence of soft tissue density in Mediastinum. Neoplastic (cancerous) process is not excluded.
Next step - Bronchoscopy. Findings are inconclusive, as I have a large lesion abutting the pericardium. The pulmonologist cannot get a biopsy of this, as it is too close to my heart.
Pulmonologist orders a Pet Scan and , "I lit up." All physicians involved are totally fixated on my smoking history, even though I've quit smoking and I keep reading in all of my Radiology reports that granulomatous process is the most probable cause, though lymphoma cannot be ruled out without further testing.
Too bad I never took the time to look up granuloma or granulomatous. At the very least I would have questioned what happened next. I would have been seeking a second opinion, before I agreed to major surgery.
Due to the Pet Scan results, my pulmonologist refers me to a thoracic surgeon.
Thoracic surgeon does not wish to see the results of the Pet Scan. ODD to me... HE is only interested in my X-Rays, CTScans, recent blood work and Bronchoscopy results from my current pulmonologist. He states that I need a thoracotomy and that I need to schedule my thoracotomy as soon as possible before all the good OR teams take off for the holidays.
Who is staffing the operating rooms during the Christmas and Hanukkah season, Santa's elves? Scary thought, if you need an emergency surgery during any extended holiday period.
I shall never know why not one doctor at the time did not first suggest a mediastinoscopy. But, I will tell you this much. I had the most intense, invasive, and risky type of surgery you can have done to you to diagnose chest irregularities, a thoracotomy. It ruined my mental health, and was terrifying.
I believe there are three types of thoracotomies(incisions into the chest wall), that chest surgeons perform, perhaps even more types as it's been almost 4 years since my surgery. I had what is called a flexible bronchoscopy followed by a right muscle-sparing lateral thoracotomy with a right middle lobectomy(removal of middle lobe of right lung) and thoracic lymphadenectomy(excision of lymph nodes) and resection (sugical removal) of middle mediastinal mass. The mediastinum is the region between your pleural sacs which contains your heart and all of the thoracic vicera, except your lungs. They entered via the fourth intercostal (rib) space. I believe this describes what a rib spreader is used for.
Listen to your body. I never once felt as though I had lung cancer. I also had none of the symptoms. I had no cough, no weight loss.
I am left with a terrible scar, not to mention the extensive internal scarring and the pain and adhesions that come with it. I have intense pain and pressure in the center of my chest, most all the time, and doctors I see are not sure if it's sarcoid growing or pain from the scar tissue which resulted when the surgeon removed what he said looked like a mass of matted lymph nodes.
If we could have sarcoidosis removed from our bodies with a surgery, would not most of us go for it? Then there's the article I read somewhere that stated sarcoidosis loves scar tissue and the granulomas thrive on it. I have no idea if this is true, but the information would be of no use to me at this point.
The most heartbreaking comment I heard was during my first appt. with my pulmonologist, a while after my surgery, when he stated laughingly: "I just took a look at your post op X-Rays and you're full of staples". It felt like a slap in the face.
When faced with any type of non emergency major surgery, please get a second opinion from a reputable physician at a reputable medical facility, preferably a doctor whose credentials and reputation can be validated by someone you trust.
I lost the middle lobe of my right lung, suffered the pain of severed nerves and muscles, the pain that results from separation of the ribs, and sunk into the deepest depression of my life. I still cannot sleep comfortably on my right side.
I was forced into a surgery by fear. I was hoodwinked into thinking that the surgery was what I had to have in order to have a chance of survival. I felt I needed a second opinion and ignored my gut instincts. I made a terrible mistake.
How important is a second opinion? How important is your life or at the very least, your resulting quality of life?
Go for that second appraisal of your medical condition in order to never look back and ask yourself, what if? Go for the sake of the people who love you. Go because you will feel better when you make your decision. God Bless... JanetG
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