Posted 8/25/2011 8:07 AM (GMT -6)
This is my second time going through call-backs. The first time was in 2008; that was when I learned I had Fibrocystic breasts. Makes sense; I had uterine and ovarian cysts and fibroids. I had a hysterectomy at age 30, due to Endometriosis. They left me one of my ovaries, but it only occasionally "fires" because it is cystic. So I went on a high dose of estrogen and stayed on that for 10 years. There isn't a hereditary risk factor in my family, so I'm doing my best to be practical, and not worry about this second call-back. The first one was just a cyst.
What DOES concern me, and the reason I'm posting here, has to do with how my primary care physician is handling this.
Today is Thursday. My routine mammogram was two weeks ago. The first notice I get that the results had come in was on Monday, four days ago, in the form of a phone call from the diagnostic center at the hospital, wanting to schedule me for a follow-up mammogram. I told them I knew what it was, we'd done this in 2008, and not to worry - it's just a cyst. The receptionist gave me a rather long pause, and said that she would be right back. She came onto the line a few minutes later and said she wasn't allowed to discuss the diagnosis from my mammogram with me, but that I should really talk with my doctor.
Diagnosis? What diagnosis? That threw me for a loop!
So I called my doctor's office right away. Talked to a nurse, who said she'd have the doctor call me back. I didn't get a call that day, so the next day (Tuesday), I called again. Told the nurse that I hadn't heard from the doctor, but wasn't this just about the same small cyst from 2008? This nurse said she'd look at my chart if I'd wait a few minutes.
She came back on the line and said, "I think you need to talk to the doctor."
Well that alarmed me.
She then followed up and said, "You know, these test results really aren't my forte, and I'm not able to read the mammogram. It's probably nothing. But I'll print this out for the doctor and make sure he calls you this afternoon or this evening."
I waited. No call.
By Wednesday morning, I'm kinda huffy. So I called the doctor's office back, and said I was very unhappy with the level of service I was getting, the diagnostic center wanted me in for a test on Thursday, and I needed to know what the heck was going on!
The nurse went into "don't shoot the messenger" mode. Well, I couldn't blame her for that, and I said so. But at the same time... you know? She said she would see what could be done and promised to call me back.
An hour later she calls, and says that the mammogram showed a dense mass, that no, it wasn't in the same place as before. It was just below the nipple, was not a collection of smaller masses, and that I would need an ultrasound. I asked her if the threat level for this one was higher than the one for 2008. She said yes.
Okay, so at least that told me some of what I needed to know. But I had questions: like how big the mass is, what it looks like, what the Radiologist said on the evaluation of the films. She couldn't give me an answer for any of those questions. This time there wasn't even a promise to have the doctor call me. I hung up frustrated.
I did do a self exam, and I'm pretty sure I found the lump they were talking about: it's just behind my left nipple, at the 9 o'clock position. about 1/2 inch wide, 3/4 inch long, smooth and shaped like a teardrop with the tapered end pointing at the other breast. In doing my self-exam, I know that my breasts always feel like I'm palpating a padded bag of pebbles. This was a significantly larger pebble among pebbles, but still feels palpable; it's not hard.
Right. So I talk this all over with my husband, and when he comes home from work, he says that one of his coworkers had the same situation, and just opted for a biopsy. That it's the only way to know really for sure what you're dealing with. Cool. I call the insurance company - yep, you can go straight to the biopsy. I call the doctor's office: no go. They have a policy. Mammogram, then ultrasound, then biopsy.
"I can't just elect to have a biopsy?"
"No," she said.
Well, that was just the last straw. I asked to talk to a supervisor. I got one. She said the chief administrator was gone for the day already, but that she'd talk to her first thing this morning and give me a call.
I had to go through the runaround like this way back when I was a young woman. I knew I had Endometriosis when I was I was 24. Doctor after doctor told me it was just in my head. It wasn't until I was 30 that a doctor suggested we do an internal ultrasound. He stood there while the test was being performed, and the words out of his mouth were, "Oh my God." My uterus and ovaries were covered in webbing and scarring.
I had a hysterectomy a week later. I wanted to go back through the line of 6 previous doctors and slap their faces.
So with that experience in mind, I am NOT holding my breath that the administrator is going to call me back. What I am going to do though, is ask to get my records and find another doctor!