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October 10, 2006

Titty Twilight Zone

I got back from the doctor – my second opinion, and certainly not the opinion I wanted to hear…Actually, I didn’t hear much after the word “lumpectomy.” That’s the first time any of the doctors had used that word. After hearing it, any intelligent questions I had vanished…as it seemed would soon be happening to a portion of my left boob.

It’s several hours later, and I’m still stunned…Mostly because I don’t have cancer.

Yep. You read that right. I DO NOT have cancer. So, why the lumpectomy?

That’s what I’m asking…rather, it’s what I should have asked earlier today. It’s why I went for a second opinion. You see, I had a stereotactic biopsy in August after some new calcifications were spotted on a mammogram. A week after that biopsy, the results came back negative, everything benign – no sign of cancer. I celebrated and breathed a huge sigh of relief. Finally, my husband and I could go back to trying to make babies…which I was told to “put on hold” until this matter had resolved itself, and we knew what we were dealing with.

I got a call a week later saying, “I’m sorry, what we said before….well, that’s not completely true.” I’d like to say that I asked intelligent questions and kept it pulled together. But, I didn’t. I stayed calm long enough to hear that they wanted to do a “needle loc biopsy.” – i.e. they wanted to take another sample – a bigger sample, about the size of a flat quarter – in order to see what it is.

Then, I fell apart. All I understood them to say was that they’d made a mistake, and that I did, indeed, have cancer.

It seems on a closer look, under magnification, some atypical cells showed up – atypical ductal hyperplasia and flat epithelial atypia. (I’m working on installing a dictionary on the side here. After spending the better part of the last few months with my nose in a medical journal, these words roll off my tongue, and now my fingers, as if I had been speaking “medicalese” my whole life.)

The Breast Care Coordinator then explained it to me like this: This surgery would be kind of like removing all the suspicious moles from your body before they have a chance to become cancer.

Still, I decided to research - nobody was going to be cutting on me until I had a decent understanding of what the heck was going on. I called the original doctor, peppered her with questions from my research, and asked her point blank, “Do I have cancer?” Her reply, “No, you do not have cancer.” Whew, another sigh of relief from yours truly.

Then she added, “But there’s always the possibility that I could have under diagnosed.”

Just great.

So, I made an appointment with the surgeon. At this point in my research, I wasn’t terribly convinced that surgery is necessary, and at that point, I was still under the impression that the surgery was an effort to positively identify, without any doubt, what was seen in the biopsy.

After hearing my family history, the first doctor decides that it needs to come out. When I ask him how much he’ll be taking, he says, “Oh, nothing larger than a golf ball.”

If you could see my boobs, you’d know that in the area where they’re talking about, there isn’t a “golf ball size” available. I have the kind of boobs – small – that slope, with the top portion being flat and the bottom being fuller….yet even at the fullest part on the bottom, a golf ball size would leave a huge hole.

It should have occurred to me right then and there that, “Helloooo! They’re talking lumpectomy!” But, I swear, when people start talking about removing pieces and parts, the ability to reason disappears, at least temporarily. What did I do? I numbly filled out the information for the surgery, and let them schedule it. I left the hospital in a mental fog, got really angry and cried. Once I calmed down again, I started investigating a second opinion…and how to deal with the insurance in order to get the second opinion, etc, etc.

Eventually, I found a doctor for a second opinion and was sure, or was hoping, that she’d recommend something more reasonable…at this point the removal of a quarter-size piece is sounding like an appealing option.

She began taking my medical history and upon hearing that three of my aunts were diagnosed before, or at, 40 years of age, this doctor says, “Oh, it definitely needs to come out.” (One of those aunts died at 29. One in her early 40s. The other made it many years after the 6 month prognosis she was given.) So, I can understand why they're being careful. Even though I understand, it doesn’t mean I’m not depressed and scared at the prospect.

Now that I’ve calmed down again, I have a couple more questions to ask tomorrow, and they’re written down this time…thought I had learned my lesson about writing the questions down. Guess not, but I hadn’t expected to hear the word “lumpectomy” which the Breast Cancer Book, by Dr. Ruth Grobstein, describes this way:

“Excisional biopsy,” “wide excision,” “lumpectomy,” “partial mastectomy” – these terms are all different names for the same procedure. Each mean removal of the cancerous tissue in your breast as well as a surrounding rim of normal tissue.

So, thus the feeling of being in the “Titty Twilight Zone.” No diagnosis of cancer, yet I’m getting a cancer “treatment.” I'll just have to call back tomorrow and get some more answers.

Don’t want to sound like I’m whining. I’m grateful to have my health, and I want to keep it. Even with all my research, it seems there was a huge misunderstanding on my part. Still, I can’t complain – or I shouldn’t – I should be grateful to have doctors that are careful. One of my aunts wasn’t so lucky…she actually had a lump, and her doctor kept telling her it was nothing. Nothing turned out to be a very aggressive form of cancer, and it was much too late to really do anything.

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