Everybody Has a Story

I am sure everyone is now checking themselves and telling loved ones. This is not me on a soapbox but want you to know what I didn't.

I could never tell a lump from normal breast tissue. My doc told me that I had lumpy breast tissue and I never thought of anything of it. Because my mom had breast cancer at a young age, I had a baseline mammogram at 25. Then I went back every 5 years for another in addition to my standard annual exam and random, periodic, self exams. I felt I was pretty on top of things.

Last year, the month before I got pregnant with Macy (December 2006), I actually found a fairly large lump. My doc referred me to get a mammogram. They looked at my films, sent me home, and I got a card in the mail saying no cancer was detected. What it didn't say was that mammograms can't detect cancer in women with lumpy or dense breasts and this is pretty normal in young women (Yes, I know I am 40. Young = premenopausal in this world). Nobody told me that you should have any lump removed. I didn't know that if there is a lump, they should try looking at it with an ultrasound. I wasn't aware that I should request an MRI as someone with multiple risk factors. Looking back, I remember my doc saying something about one breast being bigger than the other which he had never said before. I just kind of nodded, "I guess", thinking that most women's breasts were not symmetrical and I had attempted breast feeding. However, a change is another sign that something may be amiss.

After Macy was born and my body got back to normal, I noticed that there was still a lump in the same spot and went back. In January of 2008, I was referred again for a mammogram. Apparently because it was the second time I was going in for the lump, they did many mammogram 'presses' on me with smaller and smaller devices. Then, they did an ultrasound and found a very large mass. Tears were running down my face and I was wiping them away as they told me "not to move," because they needed the doc to review. I don't know what the question was, there was an obvious lump almost jumping out of my skin. And how could they not have done any of this last year?

Then, they had a social worker come and get me to schedule a biopsy. A terrifying walk from the mammogram dept. upstairs to her office for 'counseling' (and they were out of Kleenex if you can believe that!). I'm not sure if I was supposed to talk to her about how I was feeling or not - I just wanted to get out of there. That same day she got me scheduled for a biopsy. I remember after my appointment calling SS and saying something ridiculous like I'll be really mad if I have cancer. And by the end of the week, I was officially diagnosed.

And not once during this, did they ever check the other breast (apparently the ultrasound isn't effective unless you are looking for something specific). Based on the ultrasound and biopsy, they originally recommended a lumpectomy. I insisted on a MRI because I wasn't going under the knife not knowing if it was in both. It was in only one but larger than they suspected in the other. And so started my blog with plans for the mastectomy.

It's kind of strange how you can tell when the call is bad news from the moment they start talking. And although I think the worst, I am still hoping to hear the next call start with, "I've got some good news..."

The system failed me. When I think about it, I get frustrated that this should never have happened or gone so long undetected in me. I've heard that healthcare is in the process of changing SOP to provide MRIs in young women (mammograms are still better for older women). And this isn't really the bright side but if I had been diagnosed earlier, I would never have had Macy and maybe not even Eli and I wouldn't want to imagine my life without them. That sounds so adult and cliche and not me, but so true.

Soapbox moment: I believe most women do find lumps themselves. Just remember, that a mammogram doesn't rule out cancer and now you can be proactive about your care. Always get it tested if not removed. Isn't this just like one of those annnoying emails that you get from people saying 'pass it on to all the women you know'? Maybe I'll start reading those now.