If you could help the medical professionals

[KatieB]

If you could help medical professionals understand how we feel, would you?

Think back to when you were first diagnosed.

For me, I received the information about my cancer over the phone, during a busy work day, where I worked taking customer service calls..... I was completely useless after that call and ended up almost losing my job (which I later quit btw)

How were you diagnosed? Did your pulmonologist or GP or surgeon let you know? Were you alone or with family? Was it in person or over the phone?

Looking back would you have changed anything about that moment you were given the news of your cancer?

I think medical professionals should know what our thoughts are about this and maybe, just maybe, in providing them this insight, they will change the way they interact with the next patient.

Please share!

[curlysue50]

I had a bronchscopy and was due to go to my pulmonary specialist the next morning to get the results. All my symptoms and the CT Scan seemed to indicate lung cancer, but I had not received my conclusive biopsy results. Up to the point of my biopsy I had been dealing with a primary care physician who could not figure out, chronic, violent cough, loss of voice, daily vomiting, significant weight loss, severe leg, hip and back pain, diabetes that had gone out of control, shadows on my chest x-ray, and difficulty breathing might add up to something more than the acid reflux she was treating me for with Prilosec and rectal suppositories. She called me at home, the night before my appointment. She had been cc'd the biopsy results because she was my primary care physician. She had not seen me the 3 days I had been hospitalized and had the CT scans and biopsy done. I had taken myself to ER when pain got so bad I could not stand it. I had also passed out and called EMS. I was living alone during the week, at the time and knew things were were not right. I called my doctor if she would admit me to the hospital. She wanted to prescribe the suppositories to stop the vomiting and give me more vicodin. So, when she got the copy of my lung cancer diagnosis she called me at home at 8pm and said," I don't usually do this, I let the doctor who performs the biopsy give the news, but I think you already know this, you have lung cancer". And then chattered on about, I don't even remember what. She told me as casually as if she had told me my eyes were blue. Her only involvement was to finally send me to the pulmonary specialist when she could not figure out why I was having so many problems. I thanked her and said good bye. Numb and alone.

My husband arrived the next morning to go with me to my pulmonary appointment. I let the doctor tell me what I already knew. That I had lung cancer. I had him write down word like NSCLC and adenocarcinoma. I then told him of my phone call the night before. I asked him if he would get in touch with my primary care doctor and ask her NOT to call someone alone, at home, the night before the physician who had done the biopsy would be giving the results. I did not think anyone should receive that news alone. I could tell he tried to hide it, but he was furious. He said he would be in touch with her. He was very caring and said he always gives his patient such news while they sit in front of him. Even if they call him and ask for the news, he makes them come in. He wants to look in their eyes and make sure they are understanding, to be sure they are okay, to be sure they know what they need to do next. As I left that office with my LUNG CANCER diagnosis that day, the last words I heard him growl to his nurse were, "Get me DR. *********, on the phone." ( I don't feel I should reveal her identity). When I went to her office to pick up my records to take to the University of Michigan Comprehensive Cancer Center in Ann Arbor, her office staff hurried around and could not wait for me to leave. I think the pulmonologist had made a big impression on them. I agree the doctor should sit you down, look you in the eyes and give you the news. No one should get the news over the phone. It is life changing information and you need to hear it and ask the questions that you know to ask at that point, you need to know what to do next.

Susan

[KatieB]

I LOVE that your pulmonologist did that. I'm so sorry you got your news over the phone and while you were alone. I can't imagine anything scarier.

(((hugs)))