It is October. That time of year when pink ribbons appear everywhere in honor of Breast Cancer Awareness. Eight years ago, breast cancer entered our lives with my diagnosis. While I have shared brief summaries of my story before, I thought that this year I would do things a little differently, and set about writing the whole story.
Thanks to the courage of women and men (men can get breast cancer too!) who had gone before me, and who were willing to share their stories, I was much better prepared to cast aside the recommendations of 4 different doctors to just wait and watch my lump, and instead, insisted on getting a biopsy and diagnosis while my cancer was still in the early stages. This is my chance to repay their efforts, and perhaps embolden another young woman who is about to sit in a doctor's office and hear "let's wait and watch."
I found the lump during the first week of April, 2002 while getting dressed. As I pulled up my bra, my fingers grazed the side of my right breast and felt a bump.
One of the things that cancer has taught me is that there is a frightening accuracy behind many of the seemingly hyperbolic expressions we casually throw into conversation: My heart stopped. I tasted fear. My stomach dropped to the floor. Everything stood still for a moment.
The instant that my fingers crossed over the lump, all of the above occurred simultaneously, which is rather remarkable since I was very healthy, had only just turned 28, and had no reason to suspect that breast cancer would be part of my life. And yet, I knew this was not good. The lump had not been there before, and now it was there, and that was not good.
(If you are curious, fear is kinda metallic tasting. I thought that was interesting.)
I asked Peter if he had noticed it before. No, he didn't think so, but - as many people would say to me from that point on - he was sure it was nothing. How could it be anything?
I called my mom - because that's what I do when I am freaking out. In a panic I describe finding the lump. She too assured me that everything was fine, how could it not be? Give it a couple days and if I am still worried I can go see a doctor.
The lump itself was small. People often ask me what it felt like, whether it hurt. It was about the size of a small pea and as hard as a BB, and didn't hurt at all. I could even roll it between my fingers - no pain. But, it was new, and it was different, and I just KNEW this was not good.
Despite all the reassurances from Peter and my mom, I called my doctor for an appointment.
In the meantime, Peter and I got some pretty wonderful news - I was pregnant! Our second child would be arriving around Christmas. We were thrilled. Even Connor - the prospective big brother - was excited.
My appointment to have the lump examined was mid-April and here's when it got interesting. As all the public health campaigns encourage you to do, I was getting my lump checked out like a good girl. And yet, when I went into the doctor's office, I got the impression that I was being humored, that the doctor suspected that this 28 year old was being a bit of a hypochondriac, and that he didn't believe he would find anything amiss at all. I started to feel silly about the whole thing and to wish I hadn't gone, until his hand reached the lump, at which point his entire demeanor shifted.
Crap.
While it was nice to no longer be thought of as the hysterical patient, having him get all serious was not exactly a victory.
He took a moment to ask me about family history. As far as I knew, I had only a great-aunt with breast cancer. Evidently, that wasn't considered a direct enough relation to classify me as having a family history of the disease. (I would learn a lot more about about family history and genetic predisposition later.)
He theorized that the pregnancy hormones were affecting my body and could have caused the lump. That didn't sound right to me. Sure, I was pregnant, but only very recently pregnant, certainly not long enough to have caused this lump that I discovered 2 weeks ago.
He offered an ultrasound and you better bet I accepted. I don't know why, but something inside me, something that I couldn't have put words to at the time, was pushing me forward, practically screaming to get that lump figured out. Maybe it was the pregnancy itself, a sense that if I am going to be pregnant, I need to make sure that I am as healthy as possible from the beginning. Or maybe it was all those public health campaigns. Perhaps I had really internalized the message that breast lumps are serious business. Or maybe it was all gut instinct. Somehow my body, and therefore I, knew that this wasn't right.
Anyway, I went to the ultrasound probably a week later. When you have an ultrasound, you don't see the doctor. A technician does your scan, the film is shown to the radiologist, and your own doctor calls you later with the results.
At least, that is what is supposed to happen.
That particular day, things didn't go as scripted. The tech disappeared from the room, with the usual, "I'll just show these to the doc, and then you can go." Instead of the tech returning, it was the radiologist who entered the room. NOT GOOD. Let's just say that now. When the radiologist comes in, it is not good.
He waved the wand over my lump, studies the screen, and then proclaimed, "well, I don't know what it is, but you are too young for breast cancer, so it can't be that." He further explained that it was a solid mass, and that if I was 60+ years old, he would be worried. His recommendation? Wait and watch.
WHAT?!?!
What do you mean, you don't know what it is, but it can't be cancer because of my age? That isn't even logical. You can't diagnose cancer with an ultrasound. Unless those little cells are put under a microscope, you cannot definitively say whether or not they are cancerous.
His report goes back to my doctor and new OB. In my very first OB appointment for this new pregnancy, I ask that doctor's opinion on the lump. She consults the radiology report and my primary doctor. They all agree that there is no cause for alarm and that considering my age, I should just wait and watch. Perhaps have it checked again in 6 months.
At this point I should note, that while the majority of breast cancer cases are in women over the age of 40, 10,000 young women are diagnosed with breast cancer in the United States each year. There are now over 250,000 women living in the U.S. who were diagnosed with breast cancer under the age of 40, and breast cancer is the leading cause of cancer death in women between the ages of 15 and 54. (These statistics are from the Young Survival Coalition's website, an amazing resource for young women who have been diagnosed with the disease.) Many of these women report the same experience that I had, of doctors telling them that they are too young to get breast cancer, and that they should wait and watch.
Waiting and watching a lump is perhaps the worst advice to give a potential cancer patient. The earlier a cancer is caught, the better the prognosis. Waiting 6 months or a year to see if a lump grows is risking that woman's life. In my case, the recommendation would have meant allowing a tumor that fed off estrogen, to live in a pregnancy fueled estrogen wonderland. The biopsy to test whether the lump was cancer or not only took 15 minutes. 15 minutes. That's it. 15 little minutes. That's all it took to answer a question that could save my life. Why would anyone wait?
Back to the story.
The OB reiterated her advice to wait and watch, but said that she could give me a referral to a surgeon if I REALLY wanted to go that way.
YES!! I wanted that damn thing out, and the quicker the better.
Peter joined me at the surgical consult. Once again, the doctor in front of us - this time the surgeon - said that he didn't know what the lump was, but his advice was to wait and watch it. I expressed my extreme frustration at that approach. Why couldn't we just take the damn thing out? The surgeon attempted to talk me out of my preferred course - getting a biopsy - by saying that only about 1 in 1,000 lumps turn out to be cancerous, and if he took out every lump that women find, women would be walking around with scars all over their breasts. (Note: those numbers were his, I've have no idea where he got them or if they are right.)
Here's the thing about statistics like 1 in 1,000. They tell you about a population, and perhaps guide doctors in treatment, but are useless if you forget that they say nothing about an individual. The facts of my case were that I had a lump that could not be diagnosed without the aid of a biopsy and microscope. He had no way of knowing whether I was the 1 or the 999.
And that comment about the scars? I was far more concerned about my health than the potential of a little scar. Sure, I would have to shelve my plans to appear in Girls Gone Wild, but I think the pregnancy and stretch marks knocked me out of the running already.
Again, I pushed for the biopsy, and the doctor reluctantly agreed.
What do you do while you are waiting for a biopsy to see whether or not you have cancer? I played mind games. One day I would convince myself that if I thought out all the possible negative outcomes, that would prevent them from actually happening. Different awful cancer scenarios ran through my head as I commuted to and from work. I would shake them off by deciding that no, I was being completely ridiculous, of course I don't have cancer and I should focus on planning Connor's upcoming birthday party.
He was turning 3 in the middle of May and we were having a big family party, with grandparents, great-grandparents, aunts, uncles, cousins, - everyone within driving distance.
My surgery date for the biopsy was early in the week prior to Connor's birthday. I think it was a Tuesday and the party was planned for Saturday. More than enough to keep me busy!
To be continued...
(Must stop here for the day. Both boys are now home, and the afternoon routine needs to start. )