My answer: I'm not.
My answer: I didn't.
My point is, and has been, that the conversation is stopping at BSEs and Mammography, without any acknowledgment of the downside. I know it's harder to embrace a complex message, but my story illustrates how our current screening methods are both failures and successes.
I had been told my breasts were dense and lumpy, as are many pre-menopausal women's breasts. So while I knew there were lumps there, I had my annual exam with my gynecologist and he never expressed a concern. When I was forty, I dutifully went for my first screening mammogram. It came back clear.
When I was forty one, I dutifully went for my second screening mammogram. The mammogram itself came back clear, but I received a call back because the person reading the mammogram detected the edge of an "axillary lymph node" that looked abnormal. I had no idea what that even meant, but came to find out that there was a weird looking lymph node in my armpit that showed up in the mammogram.
So I was called back in and given several diagnostic mammograms of my right breast. Diagnostic mammograms are more targeted than screening mammograms and they take pictures from several different angles. Two doctors examined those and said the breast was fine.
From there, they did an ultrasound of the lymph node, then a biopsy, then another biopsy, then an MRI, then a CAT scan, then a bone scan. Finally I had that node removed along with five of its suspicious looking friends.
In the meantime, I switched doctors two more times because everyone was confused and that made me quite uncomfortable.
Then I found a doctor who had clarity.
In the end, I had about 8 cm worth of cancer in my breast. That weird lymph node had a 1.5 cm tumor of breast cancer too, meaning it was on the march.
So on the success side, if that doctor hadn't seen the lymph node, the cancer might have kept on marching until it took up residence elsewhere in my body, become metastatic - "treatable but not curable."
On the failure side, there was no early detection for me. My cancer had become "locally advanced" when it was detected.
Now, would my outcome be any different? I have no idea. But I am sure that less than perfect screening gave me a false sense of security and led to a whole lot of testing that took up two terrifying months during the Summer of 2008.
No sense in playing what-ifs, I know, but I put my story out there to illustrate the nuance of our so-called early detection methods. So yes, we have to take advantage of the tools we have, but that doesn't mean that we become complacent.
I don't know about you, but for me, what we are being offered is just not good enough.
12 comments:
Great post and I totally agree with your point. While Mammograms do save lives, it can also miss the cancer. Better options need to be developed. Plus, at my age (28) getting a mammogram every year would result in quite a bit of radiation over time BUT had I had some form of screening earlier on, then I too may have caught the cancer earlier. Cheap, accurate (easily read), and available to everyone on a yearly basis (like a pap smear, or a blood pressure monitor) - that's what we need.
I to am an advocate to find a cure, even before my mom was diagnosed the first time in 2003, but after that I haven't let up on letting my voice be heard and doing what's necessary to get the word out. I was 29 yrs old when mom was diagnosed and I have been having mammo's every year since. I too have had a few scares and have been thru the diagnostic testing and routine mammograms. If people don't want to hear it oh well cause I'm not stopping :) they can close they're ears if they don't want to hear me lol. Right now what we're being offered isn't good enough and I agree with you 100%...
Love this posting, Katie! You hit the nail right on the head. The conversation has, indeed, seemed to stop right at BSE and mammograms. These tools can be effective, but they are not the be-all and end-all.
Like you, a mammogram missed my tumor completely. In my case, I did find my tumor through a BSE. In that sense, I was really lucky. I insisted my gynecologist check it out again (he had also given me a clean bill of health a few months prior), and then I got the diagnostic mammogram.
And a keen-eyed technician spotted the tumor....barely.
I love your differentiating between a diagnostic and a screening mammogram.
And congrats to you for firing the doctors who didn't meet your needs and hiring the right doctor for you.
This posting is AWESOME!! I'm going to repost.
-- Beth
Great post clearly illustrating the flaws with mammography. And a scary post, as well. Thankfully, your lymph node was detected, but the cancer should have been seen sooner. It's the false sense of security, as you say is the real scary thing. It happened to me when my annual mammo was called clear two years ago. It was the ultrasound I asked for as backup, due to famy history that detected something suspicious. Without that ultrasound, I would have walked around believing all was fine for possibly another year and that's what's truly scary. Mammograms can be good, but are not always enough and that's what people need to understand, but sadly they don't until it happens to them.
Katie,
This is an important post. You're right, BSE and screening mammograms are important, but not unflawed. I look forward to the days when we have better tools and answers for all this stuff.
Luckily you were diligent and found the right doctor for your situation. Quite the lesson there! Thanks for sharing your story.
Great post Katie and thanks for highlighting this often contentious issue. You are right to point out that because breast tissue tends to be more dense in young women, mammograms are less effective as a screening tool and may even miss small cancers.
Right on, Katie! We do need and deserve better screening options. I had my first mammogram at 36, after my mom died of uterine cancer. Every year, my results were fuzzy: abnormal but with no evidence of a tumor. More than one year involved a follow-up mammo, 6 months later, to recheck, but nothing came of those follow-ups besides a lot of fear. Lo & behold, 4 years after my first mammo, my OB-GYN found the lump that was malignant. Makes me wonder if it was there all along, but was undetected by the mammos or technicians.
Your story, and this post, show how scary it is to be at the mercy of keen-eyed technicians, and how easily our outcomes can go either way; you are a shining example of the importance of self-advocacy.
Your post shows the complexity of diagnosing breast cancer, as do some of your comments. I too had a mammogram that was "all clear" only to find my cancer myself the very next month. Yes, it was there on the mammogram, but they didn't see it. In my case they missed all sorts of clues, especially my family history in which EVERY female has died of breast or ovarian cancer.
The situation surely needs more research.
Dianne Duffy
Thank you, thank you, thank you, thank you. I started to write a post a few months ago about how those of us who identify problems, blow whistles (or bang cowbells!) or otherwise ask the world to do better get misunderstood, tick people off, get labeled as 'negative' (which is a wonderful word to anyone with cancer, of course),etc., etc., while people completely miss the point.
Regarding the whole kerfuffel about BSE's & mammo's being inadequate, THIS is the point. None of us has ever said, stop checking your breasts or stop having mamms. But we need to do better.
It'll be interesting to see whether you get any comments from any of your previous nay-sayers.
xxoo, Kathi
Wow, what a lot to go through. You're going to help so many people by sharing this story.
I believe in mammograms because they're the only way you're going to catch ductal carcinoma in situ before it has a chance to become invasive. Some DCIS types are slower moving than others, but my docs told me I had a 50/50 chance of mine becoming invasive. Because my breast tissue is dense, my oncologist also ordered an MRI (which the American Cancer Society now recommends as adjunct tx to mammograms for women at higher risk) but they're really pricey.
While I got lucky having mine caught so early, I wholeheartedly agree with you that mammograms are far from perfect. We definitely need better screening tools.
P.S. If it helps, I have never thought of you as anti-mammogram.
Thanks for this post Katie. I don't think of you as anti-anything except breast cancer. Keep telling the truth sister......
Thanks for clearing this up for me, Katie. I'm doing a blog post about a new diagnostic technology called tomasynthesis this week. I'm interviewing a radiologist in NYC about it tomorrow.
We need better tools, indeed. Let's keep pushing for them.
Post a Comment