Staying Alive

My Story
Having spent more than ten years working in various positions in the medical field, I like to think that I know my way around, a bit. My theory was put to the test recently when, one night watching TV in bed, I noticed a golf-ball size lump protruding from the base of my skull. I had worked for an Oncology Clinic, and although not a physician, I didn’t feel that this “lump” warranted much thought, however, my fiancÃ?© felt otherwise. With his threat of canceling the wedding, I [reluctantly] made a doctor’s appointment.

After filling out piles and piles of papers, providing my address over and over, listing all of my bodily issues from my menstrual cramps to my problem with constipation, and then signing a three paged document saying that I understand that they will do their best to protect my privacy (even if it means not telling me anything), I was ready to sit in the waiting room and wait! After being a patient patient for well over an hour, I was taken back to see the physician. She entered the room, asked me about my complaint, issued me an order to obtain an X-Ray, and was prepared to send me on my way. “What are we looking for on the X-Ray, doctor?” I had to ask. “Cancer,” she said. Her one worded answer stunned me for a moment, and by the time I caught my breathe, she was exiting the room.

I proceeded to the walk-in Radiology Clinic down the hall. After sitting in their waiting room for 30 minutes, someone came to the desk, took my information, and quickly took me back for my X-Ray. “Will you be able to tell me anything?” I asked, knowing the answer. “All I can do is show you the films,” she nicely told me. She developed the films and came back out to the waiting room for me, “remember, I can’t answer any questions,” she said. In my mind I’m already thinking that she knows that I have a brain tumor, and she can’t tell me. The film nearly knocked me off my feet. There was a definite white mass on the back of my skull. She hugged me and repeated, “remember, I can’t answer any questions.” She also informed me that she would deliver the result to my physician right away. Tearfully, I left the building and went straight home to wait for the bad news.

Hours later, I had no news, so I called the doctor’s office, and left a message (which was apparently my only option). I continued leaving three messages a day for the next four days. Finally, an entire week after the initial appointment and X-Ray, I received a call back from the nurse telling me that if she had the results, she would have called me back after my first message, and in so many words, she told me not to call her, she would call me. I then took it upon myself to call the Radiology Clinic to make sure that they had, indeed, forwarded the report, as they said they would. I was told that the report had been hand carried on the day that the X-Ray had been taken, and that they would hand carry it and personally deliver it to the nurse with whom I had been speaking. The call I had been waiting for arrived that evening, and the nurse proceeded to tell me that I had a 2 cm mass in my head. Again, I was too stunned to speak. My next step was to get a CAT scan, because the X-Ray didn’t tell them anything (why they did it, then, I don’t know). So, I hurry up and wait for another appointment. Then I hurry up and wait for some more inconclusive results. I finally took it upon myself to visit a Neurosurgeon, who decided to remove the mass and send it for a biopsy. I then received a call (after the surgery), from my Primary Care Physician stating that I need to see a Neurosurgeon for further evaluation and a biopsy…thanks!
Long story, short I am OK. However, if it had been something serious, and I hadn’t taken [some] initiative, I could have been the one that everyone talks about saying, “if only they had caught it sooner…”

During my ten years in the medical profession, I saw all types of patients. Those that [to me] seemed nonchalant and didn’t call, didn’t follow up, and some of those didn’t live long after being diagnosed with cancer. There were the others, that wanted copies of every report, every letter, and would ask all the questions in the world; they are survivors. No, a patient’s outcome is not always based on how proactive and aggressive he/she is, but taking responsibility for one’s health certainly helps.

Protect yourself
When you choose your health insurance (if you have a choice), you should consider your health status at the time. Health Maintenance Organizations (HMO’s) may require referrals from a Primary Care Physician (PCP) in order to visit a Specialist (i.e. a Neurosurgeon), and even then, you may only be issued three visits per referral. If you have a health problem, you may easily lose track of things like this. A Preferred Provider Organization (PPO) allows you to make your own choices (to an extent); you will be allowed to choose from a list of participating physicians and see any specialist that you feel necessary (as I did when I took it upon myself to visit a Neurosurgeon).

The Internet has a lot of strange things, but at the same time, some very useful and helpful information. If you google “lump on skull” you get some reputable results and some not-so reputable. Below are some links to the more reputable websites:
www.webmd.com
www.emedicine.com
www.nlm.nih.gov

Doing your own research will provide you with knowledge that will enable you to ask the appropriate questions the next time you speak with your physician(s). Don’t live in worry! Call and ask questions, go to the office and sit in the waiting room until someone is able/willing to talk to you. Demand a copy of your medical record, it’s your medical record; take the record to another doctor that is willing to sit down with you and go over things. Get a second opinion, don’t just settle for what one physician says.

It’s unfortunate that we pay these medical providers and yet still have to do most of the leg work, but it is our health, and we have more of a vested interest, so we all have to take more responsibility for our own health.

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