So, how has your month been?

Things have been tense here. I haven’t said much about it, as there’s been a whole lot of waiting going on, and I didn’t want people to worry.

TL;DR – I don’t have cancer. And the story below is one of fear and stress, not sickness and pain. But I did learn how miscommunication and sloppy bedside manner can really mess you up for a month.

I have hereditary hemochromatosis. This is not important, but it’s a genetic condition that makes me need to see a hematologist every 6 months or so to check my iron levels, and sometimes I get bloodlet if they’re too high. What’s important is I see a hematologist/oncologist in a cancer center, and out of habit, she checks my lymph nodes and gives a breast exam every time she sees me, even though I am there for iron studies. It’s routine for us by now, having done this for over 11 years.

This time I was telling her about my book deal when I saw her face change. “I found a lump. There. Have you felt that?”

“Uh, no, I just-”

“OK, we’ll schedule you a mammogram and get it checked out. So will your book be in stores?”

“Well, yeah, it will, a mammogram?”

“And how do the stores find out about a new author? How will they know to stock your book?”

“That’s what the publisher does, um, a lump?”

“Great, well, don’t forget your flu shot.” And whoosh, she was gone.

The next week was stressful, to say the least. We walked around stunned, then did research to find my chances are low (genetics, when I had a kid, all those factors), but still. Lump.

It kinda permeates your world. I wanted to introduce myself, “Hello, I’m Mur, I have a lump in my breast.”

“I’ll have a number six with sweet tea, and I have a lump in my breast.”

“Good night, sweetie, I love you and I have a lump in my breast.”

Went for the mammogram. I’ve never had one. And you know those blood pressure machines in pharmacies that have the emergency release button? Yeah, mammogram machines don’t have one. They just squash you flat and you’re at the mercy of the technician to let you out. I developed a new fear- I’m stuck during a mammogram, squashed flat, and the building catches on fire and my technician runs out. And I’m stuck like a bear in a trap. And I can’t bite my own breast off.

After the mammogram, they decided they wanted to do an ultrasound. Then they looked at the mammogram order and said they simply couldn’t find a 3cm mass.

3cm.

I am not a large breasted woman. Missing a three centimeter mass in my breast would take a blind person with no hands, trying to examine the wrong woman. It just can’t be done. Why had my doc written 3cm? A 3cm mass would be actually visible on a woman my size.

“Maybe she meant 3mm?” I suggested. The radiologist frowned and said they couldn’t assume that, and they had to keep looking for the 3cm lump.

They found a tiny little dark spot that was so small they didn’t know if it would develop into a cyst or another kind of growth, but they figured that might be what she was referring to. But the radiologist said he couldn’t find anything to be concerned about, so we’ll do another mammogram in six months and tra la la go enjoy Thanksgiving.

He may not have said tra la la, but that’s what I heard. Whew. Time to relax, that was a scare, wasn’t it?

The week after thanksgiving, my phone rang. A very nice woman from my doctor’s office was calling to confirm an appointment with me with a doc I had never heard of. After a lot of “uh, I don’t know what you’re talking about?” we determined that my doctor had gotten my mammogram results and scheduled an appointment with a breast surgeon.

Without discussing anything with me.

What. The. Fuck.

So I told the woman I would look into this, but that this was a shitty way to run a practice and I was very upset that I didn’t hear anything from the doctor about the mammogram.

The day after, I called back and left another message telling them how angry and confused I was. The nurse said the doctor was in the office and she (the doc) would be sure to call me back. Didn’t happen.

Two days after that, I called and left a similar message saying that I was leaving their practice since clearly they either had bad internal communication about contacting me, or didn’t think it was important, either way they weren’t people I wanted dealing with my possible condition, whatever it was – which I didn’t know because no one would TELL ME. A very apologetic nurse called me back and said that the doc wasn’t in the office but she would be sure to call me back. I told her I wasn’t holding my breath.

Did I mention that the week this was going on, Jim was out of town? Yeah. Bad timing and stuff. So that night around nine I was on the phone with him when another call came in. I didn’t recognize the number so I didn’t answer it. Turns out it was my doc. On the message, she sounded annoyed and said she “believed someone sent me a postcard with my mammogram results” and said they were “inconclusive” so she wanted a breast surgeon to look at them and see if he wanted get a biopsy on the “three millimeter mass.”

So it was 3mm.

The next day I called my GP and went to see her, and nearly broke down in tears talking about how I had no idea what was going on and no one would talk to me or sound like they gave a shit. She examined me, finally found what the oncologist had found, and suggested I go to another breast surgeon for another exam, but she said it wasn’t something she would worry about, she just wanted to be cautious. I called the first breast surgeon my oncologist wanted me to see and said a very polite FU (ok, I just canceled the appointment, it wasn’t the woman who answered the phones fault.) The following Tuesday I saw the breast surgeon that the GP suggested, who heard the whole story and then gave me a manual exam. It took her a while to find the lump. When she did, she said she thought it was a cyst and backed up the radiologist’s suggestion to check again in 6 months. That was it.

I’ve heard horror stories about doctors who are good at what they do but terrible with patients, but I didn’t think that would be my case, since I’ve known my hematologist since the 90s. She treated me through my pregnancy, and then gave me babyproofing stuff when her twins got too old to need it, for crying out loud. I would allow her the brusque diagnosis of the lump; she was nearly an hour late seeing me and clearly was stressed that day. I’d even allow her the mistake of no one alerting me to the mammogram results – internal communication errors can happen in a busy cancer center (although I hope not often, as it could mean someone’s life). But calling me only after I threatened to leave, and then not even apologizing, but seeming annoyed that I was being so demanding as to want to know my results of a pesky cancer screening, that I can’t forgive. This woman’s inconsiderate handling of me gave me a month of stress and anxiety during a time of travel, deadlines, and holidays, and it wasn’t necessary.

So that’s what I’ve been up to. How are you?

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7 Responses to So, how has your month been?

  1. It’s scary to think that the lines of communication between doctors, nurses, office workers and patients is liable to be just as questionable as the lines of communication in any other office structure. At least when I forget to call someone back it’s about something relatively harmless, not their potential health.

    When I began the year-and-a-half that eventually led to my having a very minor cancer operation (I’m fine now), I received a call from the nurse/office manager at my GP who left me the following message:

    “Hi, we need you to call your doctor about the CYSTS on your KIDNEYS. K, thanks, bye.”

    This was during my X-Mas break. Turns out CYSTS on my KIDNEYS turned out to be a tiny (less than half a cm) bump on one kidney. But still…

    Anyway, all that is simply to say, I feel you pain. Glad to know you’re fine and keeping track of everything.

  2. Evo Terra says:

    Very glad you aren’t dying, Mur. The world needs more, not less, Mur.

  3. John S. says:

    And this kind of story is why I started RateMDs.com. Happens frequently, unfortunately, and oftentimes the patient is too intimidated to call the doctor out and name names. This is also the kind of story that the state medical boards will completely ignore if you were to file a complaint.

  4. Oh goodness. :( *hugs*

    December continues poorly over here. I really do want to sleep the days away, except for the nightmares.

  5. Kristin Molnar says:

    I’m glad you’re all right. No one should have to go through that kind of stress and miscommunication from a doctor about something so potentially serious. I hope the rest of your holiday season goes better.

  6. Jackie says:

    Ugh. I’m sorry you had to go through that. Especially during the holidays. It sounds frustrating and scary. The not knowing part is the worst. I’m glad it had a good outcome. Now relax, put it behind you, and enjoy the holidays!

  7. Deb Van Zelfden says:

    I am so sorry you went thru this Mur. Sad to say I know too many stories from friends who went thru similar circumstances. I think everything you did was absolutely correct. I’m sure I would have done more crying and most certainly some screaming. Traveling, deadlines and holidays all on top of this scare. You really are “MightyMur.” Take some time to de-stress. We need you.