The Perfect Storm
No, I did NOT skip a mammogram.
Phew! It feels good to get that out there. For some reason I feel the need to protect my reputation as the responsible, rule-abiding, appointment-keeping person that I am. I also feel the need to let other rule-abiding people know that you can find yourself up sh**'s creek even if you keep all of your appointments and ask all of the right questions (or at least what you think are the right questions!). The human body is complex and our ability to see what's going on inside at any given moment limited. Neither people nor technology are infallible. That said, intuition is a powerful thing and I wish that I had trusted mine a wee bit more.
The thing is that I kinda felt something was amiss and I kinda asked my doctors to take a closer look at a potential "problem area" in my right breast months before a biopsy would show that I had ductal carcinoma. By then the cancer had already bust out of the ducts where it had been incubating. I had fallen into a hole and it was up to me to dig myself out. Only I had no idea how deep the hole was or whether any of my tools were going to work. Wait a minute. How do you dig yourself out of a hole? That sounds hard. Plus, I've already introduced the storm metaphor, haven't I? Let's go with that.
Here's where I have to stop and take a deep breath. You see, every time I think about how many months went
by before I was diagnosed I feel like I've been suckerpunched. How could they have missed it? What if they had trusted my judgment from the beginning and not made me doubt myself? What if I hadn't been booted from my PCP's practice for being "too healthy" and transferred to a young and relatively inexperienced PCP when I needed someone to advocate for me the most? What if I hadn't believed the docs who assured me that everything was okay?
Early detection is key with breast cancer. Yet a combination of events and circumstances akin to the “perfect storm” that took down the Andrea Gail and her crew when they went out for the last run of the season in the fall of 1991 conspired against me in my quest to catch this thing early. You see, when I went for a mammogram in the fall of 2014 I went to a facility that still used conventional 2D mammography. It turns out that traditional mammography is not very reliable at detecting cancer in women with "dense breast tissue." So much so that Massachusetts (thankfully) now requires doctors to inform women who fall into this category that better technology is available. In all fairness, the technician did mention that I should get a 3D mammogram - called tomosynthesis - next time around by going to the main hospital rather than to the satellite location I had been visiting for reasons of convenience. I figured that meant the hospital didn't have the 3D technology yet. I mean, it's not like anyone would opt to wait another year before starting to get mammograms that are more accurate, for cryin' out loud. I have since learned that the main hospital did indeed offer 3D mammography at the time. Let's call this facility's decision to scan me even though they could have sent me down the street for more accurate imaging the cold front coming down from Canada.
.
Throughout this whole ordeal, my timing has been just pitiful. The cancer reared its head at the exact time I was informed about tomosynthesis (but not offered it) as an option. I notice a ridge of tissue at the base of my right breast that was just a bit thicker than I remembered it being in the past, but I don't catch it until a few weeks after the ill-fated mammogram. The change was subtle but it bothered me enough that I called the facility after being given the 'all clear' and asked if they thought I should have the scan redone because they might have "missed a spot." "No," they assured me, "we're really good at getting everything in the image." Considering how much the mammogram had hurt I figured they were probably right.
Early detection is key with breast cancer. Yet a combination of events and circumstances akin to the “perfect storm” that took down the Andrea Gail and her crew when they went out for the last run of the season in the fall of 1991 conspired against me in my quest to catch this thing early. You see, when I went for a mammogram in the fall of 2014 I went to a facility that still used conventional 2D mammography. It turns out that traditional mammography is not very reliable at detecting cancer in women with "dense breast tissue." So much so that Massachusetts (thankfully) now requires doctors to inform women who fall into this category that better technology is available. In all fairness, the technician did mention that I should get a 3D mammogram - called tomosynthesis - next time around by going to the main hospital rather than to the satellite location I had been visiting for reasons of convenience. I figured that meant the hospital didn't have the 3D technology yet. I mean, it's not like anyone would opt to wait another year before starting to get mammograms that are more accurate, for cryin' out loud. I have since learned that the main hospital did indeed offer 3D mammography at the time. Let's call this facility's decision to scan me even though they could have sent me down the street for more accurate imaging the cold front coming down from Canada.
.
Throughout this whole ordeal, my timing has been just pitiful. The cancer reared its head at the exact time I was informed about tomosynthesis (but not offered it) as an option. I notice a ridge of tissue at the base of my right breast that was just a bit thicker than I remembered it being in the past, but I don't catch it until a few weeks after the ill-fated mammogram. The change was subtle but it bothered me enough that I called the facility after being given the 'all clear' and asked if they thought I should have the scan redone because they might have "missed a spot." "No," they assured me, "we're really good at getting everything in the image." Considering how much the mammogram had hurt I figured they were probably right.
Around this time I decided to see my PCP since I hadn't seen her in more years than I care to admit. (Okay, so I don't follow all the guidelines, but I didn't feel the need since I'm a woman and we are tracked carefully by our "other docs," if you know what I mean). Nonetheless, I found out that PCPs don't like it when you don't visit them (surprise, surprise!) and mine had booted me from her practice. Thanks a lot! I was handed off to a younger doctor who tried to figure out if my concerns were valid or if she had a nut-job on her hands.
"So you think there's something wrong even though the mammogram was normal?" she asked. I managed to stick to my guns long enough for her to order up an ultrasound of the area in question. When the radiologist saw nothing of note on the ultrasound I was starting to wonder about my sanity. The funny thing is, I remember asking yet again if it was possible that she could have missed something due to the trickiness of the location. She conceded that it could certainly happen, but she didn't tell me what I might DO to make sure that was not the case. I convinced myself that I was being overly dramatic. Meanwhile, a cyclone was forming offshore. (Now that I'm a cancer "survivor" I will go ahead and be as dramatic as I like, thank you very much).
All would be fine and dandy (meaning the cancer might have stayed in those ducts for a bit longer) if I had not had a medical situation that necessitated immediate treatment with either a hysterectomy or (get this!) daily hormone therapy. Since I had been given a clean bill of health twice, I started taking a cocktail of estrogen and progesterone. Every day. Without an off week like you get when you're on the Pill. The side effects scared me, but the prospect of a hysterectomy scared me even more. I spent months trying to get my insurance company to approval me for a new form of noninvasive therapy and I even got an MRI as part of the screening process. The folks at Brigham and Women's Hospital took image after image of my uterus even though another part of my anatomy was silently trying to kill me: my boob.
Although the mammogram and ultrasound failed to turn up anything, my midwife referred me to a breast surgeon for another opinion because she could tell I was still worried. Puzzled is probably a better word. I wanted to know what was going on but I took heart in the fact that it didn't feel anything like those lumps they are always warning women to look for during self-exams. At our first meeting the surgeon said that everything seemed fine but she wanted me to come back again in six weeks so she could check again. At this point I had been poked, pinched, squeezed, and prodded by multiple doctors and nobody seemed alarmed by anything. I was getting tired of the rigamarole. The surgeon would go on to suggest a surgical biopsy of the area, but she added that it would be tricky as she wouldn't have any imagery to guide her. Huh? That didn't sound good. Plus, hadn't they said that it was nothing on four different occasions? So instead of having the biopsy in late July, I did something else. I blew it off. (I'm not looking too good here, I admit). I resolved to skip the surgery and just get my next mammogram a bit sooner than planned. Nine months had already passed so why not wait another two? Loading up on estrogen and progesterone all the while. Yep. Hurricane Grace had arrived.
In my defense, let me say: There was no lump. Why do they tell women to look for lumps?!? They never tell you to look for a weird ridge of tissue.
Let me also repeat: They saw nothing. I figured the ultrasound was the gold standard of imaging, as that's the way it had been described to me. Turns out that the MRI is where it's really at. By the way, I love that my doctors would later describe my cancer as "mammographically occult." Nothing could be more evil.
Then there's the fact that the surgeon had - ahem - less than stellar interpersonal skills. (Seems to be a pattern with surgeons, I've found).
I had other thoughts: Most folks get guided biopsies. Why would I let the surgeon go in blind? And, frankly: It's summer and I'm too busy for a surgery that will probably turn up nothing.
Fast forward two more months, when I finally make my way for my first 3D mammogram. After waiting a while, the nurse practitioner told me that the radiologist saw calcifications and would need to take a closer look. Only this time the doctor (who is very sweet and happens to look like Tucker Carlson, with bow tie and everything) comes in and he's not smiling as he was that one time many years ago when he told me that the lump my GYN wanted checked out was just an ordinary lymph node. This time he put his hand on my shoulder, looked me in the eye, and told me these calcifications wee "very suspicious." It turns out that calcifications can be of the good variety - deposited there for harmless reasons - or the bad variety - a harbinger of cancer nearby. Mine looked like the bad sort. And it was in the exact spot I had been telling them about all along.
A few minutes later he was doing a core-needle biopsy. Except he doesn't do just one biopsy. It's more like five because they want to be sure they are sampling the tissue all around the calcifications.
KA-CHUNG. KA-CHUNG.
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| Kinda looks like my MRI, actually |
Let me also repeat: They saw nothing. I figured the ultrasound was the gold standard of imaging, as that's the way it had been described to me. Turns out that the MRI is where it's really at. By the way, I love that my doctors would later describe my cancer as "mammographically occult." Nothing could be more evil.
Then there's the fact that the surgeon had - ahem - less than stellar interpersonal skills. (Seems to be a pattern with surgeons, I've found).
I had other thoughts: Most folks get guided biopsies. Why would I let the surgeon go in blind? And, frankly: It's summer and I'm too busy for a surgery that will probably turn up nothing.
Fast forward two more months, when I finally make my way for my first 3D mammogram. After waiting a while, the nurse practitioner told me that the radiologist saw calcifications and would need to take a closer look. Only this time the doctor (who is very sweet and happens to look like Tucker Carlson, with bow tie and everything) comes in and he's not smiling as he was that one time many years ago when he told me that the lump my GYN wanted checked out was just an ordinary lymph node. This time he put his hand on my shoulder, looked me in the eye, and told me these calcifications wee "very suspicious." It turns out that calcifications can be of the good variety - deposited there for harmless reasons - or the bad variety - a harbinger of cancer nearby. Mine looked like the bad sort. And it was in the exact spot I had been telling them about all along.
A few minutes later he was doing a core-needle biopsy. Except he doesn't do just one biopsy. It's more like five because they want to be sure they are sampling the tissue all around the calcifications.
KA-CHUNG. KA-CHUNG.
They take sample after sample and I am still calm because they've indicated that some calcifications are normal, you see. Plus, there is still nothing that feels like a lump in there. I await word that it's fibrosis, or connective tissue, or any of the other explanations they'd offered over the past ten months..
And then the phone call comes. It's a young, recently-hired nurse practitioner who exclaims, in a high-pitched squeal: "You were RIGHT! There WAS cancer in there!" As if it were cause for a big celebration. She said some other things I could hardly process and then scheduled appointments for me to come in for an MRI and to meet with the breast surgeon a few days later. On the MRI the breast which had surrendered nothing on the mammogram and ultrasound lit up like a friggin' Christmas tree. For over six months I had been taking hormones that had been fueling the growth of my cancer, which turned out to be (you guessed it!) estrogen and progesterone-receptor positive. Time to start digging. Oops. I mean time to do a U-turn and steam right through the storm because, unlike George Clooney and his crew, waiting for the storm to pass by is not an option.
The failure of the 2D mammogram to detect anything, the failure of ultrasound to pick up on anything, and my doctor's suggestion that I start chowing on hormones all converged like the three storm systems that brought down the Andrea Gail. Only in this remake, I've made it over the monster waves and I'm steaming back home to my family. And I ain't never going out to sea again. How's that for a Hollywood ending? If they wouldn't give us one, then I will.
Before I sign off, and go for my last radiation session (yes, today is my last day!), I leave you with a picture of me trying to pull off the Sigourney Weaver look. I was looking a bit like Annie Lenox last week but I'm morphing into Sigourney, which is alright with me. The hair dye I chose this time around was bright copper at first (think of a newly minted penny) but it has faded a bit. By the way, I almost used Alien as the inspiration for this piece but those aliens are just way too gross to even contemplate.
And then the phone call comes. It's a young, recently-hired nurse practitioner who exclaims, in a high-pitched squeal: "You were RIGHT! There WAS cancer in there!" As if it were cause for a big celebration. She said some other things I could hardly process and then scheduled appointments for me to come in for an MRI and to meet with the breast surgeon a few days later. On the MRI the breast which had surrendered nothing on the mammogram and ultrasound lit up like a friggin' Christmas tree. For over six months I had been taking hormones that had been fueling the growth of my cancer, which turned out to be (you guessed it!) estrogen and progesterone-receptor positive. Time to start digging. Oops. I mean time to do a U-turn and steam right through the storm because, unlike George Clooney and his crew, waiting for the storm to pass by is not an option.
The failure of the 2D mammogram to detect anything, the failure of ultrasound to pick up on anything, and my doctor's suggestion that I start chowing on hormones all converged like the three storm systems that brought down the Andrea Gail. Only in this remake, I've made it over the monster waves and I'm steaming back home to my family. And I ain't never going out to sea again. How's that for a Hollywood ending? If they wouldn't give us one, then I will.
Before I sign off, and go for my last radiation session (yes, today is my last day!), I leave you with a picture of me trying to pull off the Sigourney Weaver look. I was looking a bit like Annie Lenox last week but I'm morphing into Sigourney, which is alright with me. The hair dye I chose this time around was bright copper at first (think of a newly minted penny) but it has faded a bit. By the way, I almost used Alien as the inspiration for this piece but those aliens are just way too gross to even contemplate.
It's too damn hot for wigs!
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| She wears it so well |
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