Did your mammogram catch your breast cancer?

10 May

So I went to a boob show last night, otherwise known as the Breast Reconstruction Group at Seattle’s Polyclinic.

I’ve been once before and found it a great place to learn about all the different types of reconstruction out there — and trust me there’s a lot — as well as talk to women who are going through the various stages of breast cancer school. (Hey, if they can call it a journey, I can call it a school.) 

Some of the women were newly diagnosed and surgery-bound, asking questions about immediate reconstruction, just as I had when I went to my first BRG right after my diagnosis last year. Others were there to show off their newly reconstructed breasts so the freshmen and post-treatment/pre-reconstruction sophomores and juniors could see what kind of results they might expect from tissue expanders and implants or tram flaps or lat flaps or what have you.

While it’s always interesting to hear about reconstruction (especially now that I’ve cleared the six month post-rads mark and can actually start thinking about getting new girls), hearing each woman’s cancer story is even more riveting — and heartrending. Some of them had had more than their share of experience with the disease. They’d lost mothers (or even fathers) to breast cancer. Others were hit by a diagnosis like a shovel upside the head.

What struck me last night — and this seems to happen every time I hang with a group of BC survivors — was the number of women who didn’t find their cancer via an annual screening.

As some of you may know, I’m one of those women. My cancer didn’t present as a lump but as a small “tuck” just under the left nipple. After going to my ob/gyn (who assured me it was nothing but a cyst), I went on to get a diagnostic mammogram and ultrasound. Just like all the other times I’d had a mammogram (including the one 12 months previous), mine came back clean as a whistle. No lumps, no bumps, no funny business at all. But when they took me in for the ultrasound, it was a much different story. I had four masses — two on each side.

Here’s the problem: this is a story I’ve heard again and again from breast cancer survivors. Somebody will go in for their annual mammogram and walk out with a clean bill of health. Then three or six or nine months later, they’re diagnosed with stage 3 breast cancer, an aggressive cancer that could have — should have — been caught much earlier. Worse yet are the women who die because they put all their faith in a clear mammogram, even though one family member after another has been hit with this wretched disease. 

After my diagnosis, I immediately began lobbying my four sisters to go in and get checked out, pushing them to get their doctors prescribe ultrasounds as well as mammograms. My gut told me that the five of us share more than just a dark sense of humor and a penchant for antiques. I have dense breast tissue — which is why the mamm didn’t reveal the masses lurking in my breasts. I’m guessing my sisters are every bit as dense as me (so to speak).

Unfortunately, thanks to the way things are set up (with the insurance companies, with the medical providers, with the gods, etc.), you can’t simply request an ultrasound in lieu of — or in addition to — a mamm. Not even if you pay for it yourself. One after another, my sisters were told they could get mammograms, but unless there was something wrong with their breasts (or they had tested positive for the BRCA gene mutation), ultrasounds were not an option for them. Even though their sister had just been diagnosed with BC.

This kind of crap drives me crazy, especially as I read stories about the push to get moms to go in for mammograms as a way to celebrate Mother’s Day. Mamms are all well and good for some women, but they don’t seem to do squat for those of us with dense breast tissue. And there are a lot of us out there with this stuff. In fact, according to AreYouDense.org, a website devoted to exposing what it calls “the best kept secret,” two thirds of pre-menopausal and one quarter of post-menopausal women are saddled with dense breasts. Boobs that are full of connective tissue that appears white on a mammogram — same as a tumor — making it very difficult to see who does and who doesn’t have cancer.

And yet, millions of women consider their annual mammograms the end-all, be-all when it comes to their breast health. They trust mamms and mamms alone to tell them whether they have breast cancer.

Unfortunately, it doesn’t seem like those suckers can be trusted. Not on their own, anyway.

I’m not anti-mammogram. I know of at least one person who found their cancer during their annual screening so they absolutely do work for some women. I just don’t know how many. Or how often. Or how much the technician or radiologist has to do with the final results. Nor do I know why women aren’t automatically offered a choice of a mammogram or ultrasound (or both) when it comes to their annual screening. Especially when some states are more than happy to force a woman to have an ultrasound — at least a transvaginal one — if they’re thinking about terminating a pregnancy.

Last night at the Breast Reconstruction Group, a couple of the women talked about how confusing the world of breast cancer can be. “You have this choice, you have that choice,” one said. “I just wish there weren’t so many choices, so many decisions.” I understand exactly what she’s talking about. It’s confusing and upsetting and mind-numbingly horrific to have to sort through all the options one by one, especially as you get deeper and deeper into surgery, treatment and, finally, reconstruction.

Here’s my thought, though (and no doubt it’s a naive one). If women had a few more choices up front, maybe there would be fewer choices to be made down the line. If women were routinely told about their dense breast tissue and routinely allowed to have whatever type of screening they needed — or their bodies necessitated — maybe there would be fewer late stage cancers. Fewer mastectomies. Fewer rounds of chemo. Fewer deaths. And yes, fewer hissy fits pounded out by angry boobless wonders like me.  

So I’m curious, dear readers. Did any of you discover your breast cancer via your annual mammogram? Or did you discover it through self-exam? Or via MRI or ultrasound or a physical exam? Does anybody know why women — especially those with dense breast tissue — can’t automatically get an ultrasound and have it covered by insurance? Inquiring minds want to know.

55 Responses to “Did your mammogram catch your breast cancer?”

  1. BlondeAmbition May 11, 2012 at 12:52 am #

    What a great post … as a 3-yr post-grad (just love your school analogy; I often tell people I have a degree in B.C.) I’m proud to say I (finally) completed my nipple reconstruction. The delay was mostly timing/job-related and the fact that I exchanged my implants, but that’s a story for another time.

    My BC was diagnosed through a routine screening that was anything but routine. I was on the verge of losing my COBRA and had scheduled everyone from the opthamologist to the orthopedist, and everyone in between. During an ultrasound for a pesky fibroid issue, my radiologist (aware of my extended unemployment and insurance situation) noticed I was due for a mammogram. I dutifully informed her that I was coming back two weeks later for it and she frowned knowing that someone in her office was an idiot for not combining the appointments.

    Ever-efficient, she smiled and said, you’re here — put your pants on and I’ll be back to do the sonogram (aka ultrasound). There’s a short wait for the mammogram.

    I didn’t know it then, but that delay may have saved my life.

    My mother was diagnosed with BC when I was 21 (and I’m proud to say she’s a 20 yr survivor). My gyno and doctors have kept a watchful eye over me ever since. I was told early on that I had breast dense tissue and I can’t remember ever having a mammogram that wasn’t combined with a sonogram. Up until that raw February day in 2009, my previous exams had all been without incident; maybe an extra film here or there, but no biopsies. Your post was very disconcerting to me because in all these years, no insurance company has ever contested the sonogram — and this time, it saved my life.

    You see, my radiologist found a 0.5 mm tumor in my left breast with that ultrasound. At face value, that might not sound particularly remarkable, but remember, there was a line for the mammogram. Using ultrasound alone, my doctor found a tumor so small that all four of the breast surgeons I consulted with post-biopsy said it should not have been found based on its size and location. It couldn’t be felt and it was so deep the biopsy was very challenging.

    And the mammogram, you ask? It was clean.

    I still get chills down my spine recalling that moment and wonder what would have been had there not been a wait for the mammogram that day and when the doctor got a seemingly ‘clean’ film, might she not have been as thorough with the sonogram? Is it better for doctors to do an ‘unguided’ sono first when they’re not relying on the results from the mammogram? Is it the skill and training of a particular radiologist? And how on earth was my radiologist able to detect something so small that her colleagues marveled at the find — and most troubling … how far would my disease have progressed if I’d been sent home with a clean bill of health and the 0.5 mm had a year to grow? (Fyi, the tumor was Stage I, invasive cancer).

    Long story not so short, this post really resonated with me and it’s very upsetting with all the ‘awareness’ out there, women are not routinely being informed about breast density or routinely offered ultrasounds (which are far less invasive and much less risk for those with radiation concerns) as part of their yearly exams. I have read that many states are proposing legislation that requires disclosure to women with dense breasts (I believe CT is the first state to have done this) and I hope your blog will bring more attention to this … it won’t prevent BC, but perhaps more women will be diagnosed at earlier stages as I was.

    • singleshot1 May 11, 2012 at 10:19 am #

      What an amazing story, Blonde Ambition. Thanks so much for sharing. Maybe it’s just me, but I’m getting tired of relying on chance or fate or the uncanny skills of a handful of radiologists to find these cancers. Early screening/early detection is a wonderful thing – especially when women are given all the tools they need to accomplish it. At this point, they’re not. What I’d like to know is, why not?

  2. The Savvy Sister May 11, 2012 at 3:41 am #

    Mine was mammogram, but I was NOT doing self exams at the time, and after I was diagnosed, I looked in the mirror the way your supposed to do with a self exam, and WHAMMO there was my huge dimple under my left breast! My tumor was 7cm (yes, that’s CM) and I was having mammos only every 2 years because I was under 40, so I’m sure I would have caught it sooner.
    Here is a new article on a new diagnostic tool using laser and ultrasound…..maybe the diagnostics will get better.

    http://www.sciencedaily.com/releases/2012/05/120507141351.htm#.T6kPE1V78Bc.twitter

    Great post!

    • singleshot1 May 11, 2012 at 10:26 am #

      Thanks for your note and for passing along the info regarding Photoacoustic Mammoscope (PAM). It certainly sounds less invasive than the pancake machine we’ve all grown to hate. Which brings up another good point: if the screening options were less painful/scary/humiliating, would women be more diligent about going in for regularly screenings? Hope you’re doing well and so happy the mamm worked out for you!

  3. pinkunderbelly May 11, 2012 at 4:20 am #

    Angry boobless wonder–that’s so funny! My OB-GYN found my lump, but even when she placed my hand on it, I didn’t feel it. A routine mammogram, diagnostic mammogram, ultrasound and biopsy followed, but none of those, nor the PET scan, chest x-ray or CT scan, showed the Pagett’s disease and 5-cm-diameter smattering of tiny tumors in the “clean” breast. Yep, both breasts were infested, yet only the tumors contained in the right breast showed up. The mess in the left breast only came to light with the post-mastectomy pathology. Had I opted for a single mast, the evil lurking in the left breast would have gone unchecked. Scary.

    • singleshot1 May 11, 2012 at 10:31 am #

      Very scary, Pinkunderbelly. I know there’s no perfect screening tool; they all have shortcomings. But limiting women to one tool seems insane. If we’re serious about early detection, we need to make sure women have access to everything in the breast cancer detection arsenal. And we still have to be ready to make those hard decisions based on our gut, as you did. Cheers to you, my friend. So happy you were able to save your own life.

  4. M May 11, 2012 at 4:29 am #

    My sister was dx’d at age 43 by regular screening mammo as stage 0 (maybe DCIS? was mid-late 1990s, they called it 0) but when they did surgery they changed the staging to 2 and she had the full gamut of nasty treatments. She is still here, 15+ years on! My mom ( dx’d at age 61, 5 yrs before my sister, and died <1yr post-dx) was dx'd at stage 4 (never had a mammo that I know of tho). I've been told I have dense breasts for years (apparently a little less dense as I get older), have been getting mammos since I was 8-9 yrs younger than my sister's age at dx (doc said to start 10yrs younger than earliest incidence, so I started in early 30s, am now mid40s). A few years ago we added breast MRI at same time as annual mammo, so have had a few of those now too. (some discussion as to whether to have at same time for comparison or separated by 6 mos to give more coverage – anyone got info on that tossup?) Haven't had a breast US.

    • singleshot1 May 11, 2012 at 10:35 am #

      I’m so glad your doc is taking your situation seriously (and I’m so sorry to hear about your mom passing). Don’t understand why my sisters’ docs won’t do the same for them, especially when they’ve offered to pay for U/S’s out of their own pocket. I so don’t want my sisters going through the “full gamut of nasty treatments” that your sis went through. Take care and here’s to years of clean screens in your future!

      • Susan September 21, 2013 at 6:22 pm #

        Your sisters need to get new docs. My doc had no problem with ultra sound, but she really should have been recommending an MRI. I had clean Mamo, with “notation” of a “new” area that was being watched every 6 months. Clear in April, suspicious in Oct. Mastectomy in January.

      • Susan September 21, 2013 at 6:28 pm #

        Oh, I forgot just one tiny thing. Once it was determined I had a lump, THEN they ordered an MRI. They found another lump 1.1 mil. Too small to show up on Mammogram. It was 80%benign.20% possible future cancer. Determined my choice down from lumpectomy to mastectomy. I’m so glad I found this site. I thought I was the only one asking these questions.

      • singleshot1 September 22, 2013 at 10:55 am #

        Thanks for writing, Susan, and I’m glad you found the site, too. I think the more women speak out about their experiences with screening, surgery, treatment, side effects, caregivers, doctors, medications, recovery, etc., the better. “Knowledge is power” is one of my favorite adages and when it comes to cancer knowledge isnt only powerful, it can save your frigging life.

        Take care, all the best, and please stop in again!

    • Laura Temkin May 11, 2012 at 9:14 pm #

      My breast surgeon and oncologist go with every 6 months.

  5. rosiebogie May 11, 2012 at 4:40 am #

    Mine was caught during my routine screening. Lucky girl I am it seems! I am 45 years old with implants, so mamms are always a real joy seeing as how I have to have two sets of pictures. 3 months prior to the “finding”, I had seen my primary care doctor for my annual exam. She clearly didn’t feel a dang thing.

    • singleshot1 May 11, 2012 at 10:36 am #

      Glad to hear the mamm worked for you. It definitely does for some women and some cancers. But not all. We need individualized alternatives! Okay, climbing off soapbox now. ; ) Thanks so much for reading and writing and best of luck to you, my friend.

  6. M May 11, 2012 at 5:13 am #

    I have to leave a 2nd comment/rant. For years, I’ve been told “you have dense breasts”. It if often said in a way that is somewhat negative or accusatory, like “you’re a problem”. It took a while for me to stop taking it personally and start getting irked. I’m a premenopausal woman, so it’s not surprising that my breasts are still somewhat dense. And it;s not like I chose it or can do anything about it – factory equipment and all. :) So why is it ok to “pathologize” a normal healthy woman’s body instead of talking about the inadequacy of the technology in what is a very common situation?! It’s not MY problem, it’s that the medical establishment and technology development aren’t capable of dealing with my body properly. It’s not a “condition”, it’s just how my body is! (there maybe areas where I’d say I’m a “freak of nature” but this isn’t one of them) Couldn’t we change the frame here – “the mammo can be a good screening and detection tool, it isn’t sufficiently sensitive to catch everything in certain bodies, and here are some additional screening options we think might be a good idea in your case”.

  7. Laura Temkin May 11, 2012 at 6:48 am #

    Diagnosed almost exactly a year ago with stage 3 BC, I had a “clean” mammogram 2 months before AND on the day I found a lump under my arm. That little bump which didn’t hurt one bit, showed up black on the ultrasound. Altho my doctors searched (you probably can imagine how fun that was) they never found the tumor in my breast, only the 18 lymph nodes under my arm. Feel your pits, not just your breasts!

  8. DrAttai May 11, 2012 at 8:47 am #

    No question about it – we need better imaging for women with dense breast tissue – which includes most premenopausal women and many peri-menopausal and even post-menopausal women. Our current mammogram technology, even with digital imaging, simply cannot see through thick nodular breast tissue with reliability. And some cancers, especially lobular cancer, are hard to detect on any imaging, including ultrasound and MRI. Ultrasound and MRI also have limitations in women with dense breast tissue, but combining several imaging modalities is often recommended – each images the breast differently, and the studies can complement each other.

    Traditional “hand-held” ultrasound scanning can certainly miss lesions – it depends on how compulsive the technologist or physician is in their scanning, and how well-trained their eye is. Automated whole-breast ultrasound may help but is not yet covered by insurance. Other newer forms of imaging such as tomosynthesis and contrast-enhanced mammography unfortunately still use radiation (and an IV contrast injection for contrast-enhanced mammography) but may be helpful in women with dense breast tissue.

    Several points made above are worth repeating – NEVER ignore a lump, dimple, or other change in your breast, even if the mammogram is normal. And yes, check your armpits also! Know what is going on in your breasts, and bring any change to the attention of your physician. If the first imaging test is normal, additional imaging may be required.

    Excellent post!

    • Stephanie (@StylewithClass) May 11, 2012 at 8:59 am #

      Excellent post with so much information/insight & things to consider. For me, I found a lump myself during a BSE, when I was 32…..one year later, at my annual mammo, both sides checked clear. Because I already had a Dx of breast cancer (stage 1), the doctor also sent me for a bilateral ultrasound (I do have dense breasts as does my mother) and on the other side, a small something was found. That small something that did not show up on the mammo, was just under .8 cm and already had invaded the sentinel lymph node (Stage 2A) I agree…further screening is needed, especially for those women with dense tissue. Great post….this is such good information.

  9. motokoneko May 11, 2012 at 11:26 am #

    I had stage I BC discovered through routine screening with mammogram – tumor was too deep to feel with self-exam but having grandmother, aunt, mother and sister all diagnosed with BC I was doing both – mammograms 1x/year since mid-late 30′s. Ultrasound costs about 3x as much as a mammogram, I’m sure some insurance company accountant somewhere did a (flawed) cost-benefit analysis and decided such screening was ‘unnecessary.’ This discussion has made me curious to know what research has been done on this subject – I’m off to pubmed now…..

  10. Renn May 11, 2012 at 12:05 pm #

    Excellent post!!

    My 3cm IDC was found during a routine mammo — but only AFTER I received a letter stating that everything was normal! How could this be? My mammo was lucky enough to be reviewed a 2nd time… perhaps because I have family history, but I don’t really know.

    What I do know is that there was an entire month between my “all is normal” letter and my “you need to come back” letter. During that time, my 2010 mammo was compared to my 2009 mammo and a “subtle architectural distortion” was noticed. Because my sister was diagnosed at age 31, it was recommended that I come back for more compression views (I wrote about this in detail at http://www.thebigcandme.blogspot.com/2011/04/joining-cancer-club.html). PS: Ultrasound was not suggested until AFTER they reviewed my 2nd round of mammograms.

    More than 75% of women diagnosed with BC do NOT have family history, so I have to wonder: What what would have happened to me if I DIDN’T have family history? Would they have called me back anyway for more views? Or would they have me wait 6 or 12 more months and come back then? It’s mind-boggling.

    It’s also easy to be lulled into thinking that it’s likely “benign” since statistically speaking, that’s true (80% of breast lumps really are benign). But that means 20% are cancerous.

    As hard as this is to say, I have to be grateful that my sister had breast cancer — or my own cancer would not have been caught so early.

    That’s a tough pill to swallow.

  11. Nancy May 11, 2012 at 1:06 pm #

    Mine was found through routine mamm, although in retrospect, I probably was feeling it myself. Who knows though, my girls are lumpy so I never know if what I’m feeling is real. At any rate went through the whole mamm, diagnostic then ultrasound routine. I’m 63 and this wasn’t my first hayride. I previously had two benign tumors removed at different times, as well as several diagnostics and/or ultrasounds because of questionable routine mamms, so I wasn’t too alarmed at first. But waddya know, BINGO third time’s a charm! Now that I’m a “winner” I’ll regularly get diagnostic mamms on the bc side only, but my “good” girl is on her own apparently. I don’t get it either.

    As always, Diane, thank you for this excellent blog.

  12. Arianne May 11, 2012 at 1:12 pm #

    Thank you for your post. I found my lump in ’09 while showering. I made an appt to see my OB-GYN who found nothing when she did the breast exam. Then she asked, “Oh yeah, you said you felt a lump?” Then she felt the lump I pointed out to her. Mammogram revealed calcifications. Then a biopsy revealed cancer. Stage 2.

  13. Beth L. Gainer May 11, 2012 at 9:30 pm #

    I love this posting! A routine mammogram had missed my tumor, and I discovered it myself during one of my monthly breast self exams. It presented itself as a slight, very subtle dimple. I also had very dense breast tissue, so a mammogram missed it. My oncologist ordered MRI’s from then on, which were covered, because he advocated for my need for this test. An MRI revealed something in the same breast that had cancer, but luckily it was scar tissue. By that time, I realized that keeping my breasts was akin to Russian Roulette, so I had a double mastectomy with DIEP flap reconstruction.

    It was disheartening to hear that your sisters are having difficulty getting the screening tests they need. One piece of advice is that they find another doctor(s) who are willing to write in a letter that an ultrasound is necessary. A doctor’s letter is golden. That’s how I got my preventive double mastectomy covered by insurance. And goodness knows, that was the right course of treatment for me.

    Keep writing. Your voice is powerful!

    • DrAttai May 12, 2012 at 7:08 am #

      Sometimes even a letter from the doctor does not work. I cannot tell you how many times an MRI that I and the radiologist think is necessary is denied by the insurance company for various reasons, despite writing a letter, speaking to a medical director, etc. Yes, having your physician write a letter is important but so too is you as the patient making phone calls and writing letters to your insurance company and anyone else who can influence the situation. Having a patient that is willing to advocate for herself – now that’s golden!

      • Beth L. Gainer May 16, 2012 at 7:30 am #

        Wow. It’s ridiculous that insurance companies deny a service in spite of a doctor’s letter! You are right about patients advocating for themselves. In my case, I was the agent responsible for the intense letter-writing campaign. My insurance company agreed to cover the out-of-network expenses. I worked really hard to get my surgery approved, and my doctors were so supportive.

  14. Dianne Duffy May 12, 2012 at 12:59 pm #

    Great thoughts you have. I wish the medical (insurance) community would start to listen.

    I had an exam by a BREAST SPECIALIST and a clean mammogram in April and found my lump myself in May. It was actually marble sized on the mammogram – but just missed. By the time it was removed in July it was the size of a golf ball.

    Then the results came back positive for BRAC2, something I had been saying all along. Every woman in my DAD’s family has died of breast or ovarian cancer, but since non of my sisters, aunts or mother had breast cancer they wouldn’t believe me. (I have no sisters, nor does my dad). Stupid insurance rules…

    I have found that if your mammogram report has the word “dense” anywhere on it You can ask for an ultrasound or MRI.

    Had I known then what I know now…

    • chemobrainfog May 15, 2012 at 6:46 pm #

      ARGGGGG….OMG….. ovarian cancer deaths and still ignored by insurance company…. LET ME AT ‘EM. I am not someone who has a “little voice” when it comes to stuff like this….. Wow….. The stupidity of people who are supposed to know better…….

  15. drcranflake May 12, 2012 at 3:14 pm #

    I was another “dense” patient. My GP sent me for digital mamm’s for years because of it. One thing I realized after my cancer diagnosis was that he would always say “you have very dense breast tissue” – but he never gave the punch line: “and you’re at higher risk for BC not being caught because of it.” Odd.
    About two years ago, I noticed that my left armpit was swelling up with my periods every month for several months. I mentioned it to the GP, who said “oh, that’s just normal breast tissue”. I mentioned it to my OB/GYN, who said “let’s get you in for US”. US showed a large but normal looking lymph node. They also did a mamm which came back clear. They told me to come back in 6 months just to be sure. Six months later, everything under the arm still looked normal, but the technician saw a tiny breast lump nearby. Still nothing on the mamm. It was invasive ductal. I made plans for a lumpectomy and radiation. Then the surgeon sent me for an MRI just to be sure they hadn’t missed anything else. A second lump was found, same side. This one was invasive lobular. Upon further review, I also had LCIS, same side. (What a special case I was!!!) I ended up having a double mastectomy because of the LCIS – like Beth, I didn’t want to live with a ticking time bomb.
    I was extraordinarily lucky – even with two primary sites, I was Stage 1. The tumors were so small that no one could feel them – it could have been years before they were found. I was also lucky in that I didn’t have to fight with insurance for the US or the MRI. The moral of my story is: if something seems odd, CHECK IT OUT! If I hadn’t checked into the weirdness in my armpit, who knows when my cancer would have been found.

  16. Donna May 12, 2012 at 7:06 pm #

    I, too, had a perfectly “clean” mammogram AND ultrasound six months before I found my own lumpy, bumpy, suspicious spot….turned out to be approx 2 cm invasive ductal carcinoma. How does that happen in six months?? Actually, the mammogram and ultrasound were ordered because there were suspicious areas on my annual screening mammogram. Went in for “spot” compressions I believe they were called and an ultrasound of both breast. Came out with a clean bill of health. This was January. At the beach, in late June, same year, found a rather large lump….like, how did I not feel this the day before, or the day before that. Anyway, a month later, diagnosed with breast cancer…right after my 47th birthday. Went on to have a mastectomy and immediate reconstruction with tissue expander and slight reduction/lift on the other side for symmetry. Very painful experience (tissue expander), but great results (or so sayeth all the medical professionals that examine me)….as well as my husband! :) I, too, do not understand all the confusing news we hear about mammos, self exams, etc. I don’t understand why we can’t have MRI’s, ultrasounds, whatever it takes for ever how many women it takes, to make sure this disease is caught in its earliest stages.

  17. ZD May 14, 2012 at 1:49 pm #

    Found through self-exam. Almost 5cm.
    Would have had my first mammo the same year (just turned 40), but probably months down the line. I was very very lucky.

  18. Nancy's Point May 15, 2012 at 4:35 pm #

    Excellent post. You are asking some very important questions. I place part of the “blame” here on the “pink ribbon culture” that seems to promote mammograms as being THE answer, which of course is not the case. Mammograms are only one tool and they are far from perfect. My tumor was not found through a mammogram either. I had chest pain and went to the ER thinking I was having a heart attack. A CT scan was ordered (thank goodness) and then came the “mass sighting.” I hate that word – mass – by the way. Thanks for this well thought-out post. Keep asking the questions.

  19. Kate May 15, 2012 at 6:17 pm #

    I found mine through self exam. I had a dimple in my nipple. I didn’t feel a lump. Just new something was not right. I was only 39 but had been to my OB Gyn who had given me my script a few months earlier to get a Mammogram sometime within the year. Needless to say I made my appoitment a little earlier and it showed up on my first mammogram. The Utlrasound basically confirmed it. I am really lucky I followed my instincts and didn’t wait. I had it in two of my lymph nodes.
    Good luck with your reconstruction.

  20. Judy Griffin May 16, 2012 at 5:10 am #

    Thank you for your informative post. I am fortunate to not have been diagnosed with Breast Cancer but am so passionate about Breast Health because I have many good friends who have been diagnosed and have also lost a best friend and a close friend to this disease. Now I do also have Breast Dense Tissue so I no longer get mammos unless a sono or Themography indicate I should. I have a Doctor who does provide a script for sono only and he also does Breast Thermography which is an excellent diagnostic tool not covered by insurance. Here is an article I wrote about Breast Thermography http://rockvillecentre.patch.com/articles/breast-cancer-know-your-risk-before-detection

    • WorryWart August 6, 2012 at 10:25 am #

      Judy, Dr. Dekel is your doctor? What do you think of him and thermography? Honestly? I have concerns about the additional risks radiation poses, no offense to any of the brave women where who were diagnosed and who have mammography to thank for catching it. Mammograms are so the go-to procedure that I wonder if anyone would have caught their cancers earlier still, if other techniques were allowed routinely.

  21. Lisa Ellis May 16, 2012 at 6:08 am #

    1) DCIS – found on a mammogram
    2) IDC, .8 mm found when my surgeon felt a dimple on the underside of my breast and decided to remove what ever was causing the dimple.
    3) IDC, 1.2 cm found via MRI
    4) 2.5 cm of DCIS found after bmx, noted in pathology report

    So 25% of success rate for mammograms in my case. Not great….

  22. Julie Goodale May 16, 2012 at 9:30 am #

    Good post. Mammo is definitely not a perfect tool. It is flawed, but it is still very useful. It’s just presented in popular culture as something it’s not. It doesn’t prevent cancer, it doesn’t catch all breast cancers. We all know that, but it’s still often portrayed that way – if everyone just got mammos, all cancers would be detected early & everyone would go on to live happy, healthy lives. Reality is that if everyone got mammos, a lot of cancers would be detected, but not all of them, and not all of them early. Sadly, there are no easy solutions, but the public still wants an easy soundbite.

  23. The Accidental Amazon May 16, 2012 at 10:38 am #

    Oh, this subject just makes us all crazy, doesn’t it? One I’ve ranted about several times myself.

    My cancer was DCIS, which was not palpable, but because of the calcifications, it showed up brightly on my routine screening mamm. Because I was a healthcare colleague, the mamm tech pretty much told me then and there that I probably had DCIS & that I would be scheduled asap for a diagnostic mamm. I was & did. The radiologist told me I needed a biopsy. I then had an ultrasound that showed nothing, and a stereotactic biopsy which was positive. I was still shocked even through I was ‘warned.’ Then I had a breast MRI, which showed more spread than the mamm’s. The path report showed high grade DCIS.

    When I went in to have surgery about 3 or 4 weeks later, I had to have a wire-localization procedure by mammography right before surgery. During that lovely procedure, the radiologist found even further spread of the DCIS than any of the previous images had shown. She then had to insert two wires to bracket the spread more accurately. This had to be the most awkward procedure I’ve ever seen anyone have to perform. I had bruises to my breast for weeks after from the squishing I took from the window-paddle. The first wire went in okay, with no pain because the local anaesthetic worked. The second local did not. When she inserted the second wire, it was so painful, I passed out. When I came to (after being NPO for twelve hours by then), I threw up bile.

    If I’d had any wits about me, I would have stopped everything and asked to speak to my surgeon before going any further. I didn’t so I didn’t. Thus, my lumpectomy ended up being a partial mastectomy, to which I lost half of my breast instead of a lump. I took to calling it a slab-ectomy. Weeks after surgery, I had radiation. Then tamoxifen. Oy. I didn’t like any of the recon options so I’ve been holding off for better ones since. I had no nodes removed. I had mild lymphedema early on and axillary cording since. I’m the poster child for how miserable and confusing the treatment for non-cancer/non-invasive cancer/the ‘good kind’ of cancer/is-it-or-isn’t-it-cancer can be.

    I’ve run into that photoacoustic imaging info myself. Fingers crossed. I’ve also found this, which is Contrast Enhanced Spectral Mammography, which apparently lights up the cancer through densities and other non-cancer anomalies in breast tissue. It’s being used at one breast center that I know of in Bevery Hills. http://medgadget.com/2011/10/ge-senobright-contrast-enhanced-spectral-mammography-gets-fda-510k.html

    We desperately need better path analysis, better screening tools, less confusion, and more consistent cooperation and protocols from the insurance and medical communities on this. It’s totally nuts. You could write a book from this post. Great work.

    xoxo, Kathi

  24. diplomom08 June 18, 2012 at 4:53 pm #

    I discovered mine by myself. Was nursing my little guy and thought perhaps mastitis. When it didn’t go away in a couple of weeks time (as it had in the past), I went to the doctor. Not a good time for me as my husband was in Iraq, so he didn’t even know about the whole situation until I called him from the parking lot crying after my biopsy. Had a skin-sparing surgery, followed up by a DIEP (no chemo) and love the results of the DIEP. I spend 98% of my day forgetting that I went through that whole mess and it’s a good feeling…

  25. Lisa Miller June 22, 2012 at 2:52 pm #

    Thank you for saying what I scream to every woman I see. My stage 2 breast cancer never showed on any of the mammograms that I did. An ultrasound literally saved my life. The technician found two tumors way up high in my armpit and the MRI found a third in the front of the breast. I am doing well… only two more rounds of Radiation. We keep saying that we could have missed this exit on the highway. I tell women to listen to their bodies and never take no for an answer from any medical personnel. Ask questions and demand the care that you need.

    • singleshot1 June 22, 2012 at 2:58 pm #

      I’m a health reporter and even I didn’t know that mamms could completely miss even large tumors. I’ve become a bit of a broken record about this since I was diagnosed, as well, but I’d rather annoy people (and possibly save somebody’s girls and life) than stay quiet and let my friends and family get diagnosed with this crap disease. So happy that your technician found the tumors and that you’re doing well now. (Woo hoo on only two rounds of radiation to go, too!) Did you have surgery and chemo, too? I had the full monty and am now enjoying the wonders of tamoxifen. Is it me or is it hot in here? Oh wait, it’s me. Again. ; ) Thanks for stopping by and writing a comment and please keep me posted on how you’re doing.

  26. ninagail June 25, 2012 at 11:01 am #

    Mine was found by routine mammogram, 1.8 cm stage 1, couldn’t feel it even after I knew it was there. But I don’t think I’m “dense,” so I guess the mammo was more effective. Obviously, a mixed approach and opportunities for alternative screening methodology is needed to make sure diagnostics are effective for everyone. I’m very grateful for early screening. I’m in British Columbia, a province that starts routine mammos at age 40, was diagnosed at age 47. But in Ontario they don’t start routine screening til age 50; would have probably been very bad news for me if I had lived there.

  27. Lynn September 1, 2012 at 5:04 pm #

    I found mine. Had clear fluid discharge for yrs. More than once I went to surgeons to make sure it was not the big C. Almost to the day, a year before I found mine I went to a surgeon because I felt a lump. Surgeon says its definitley a cyst and this is why……shows me xrays and explains it might even get bigger, dense breasts and all that, don’t worry. That one year later doing my usual discharge check fluid is now bloody. My adventure started 3 days later with a stage III diagnosis. This was now 11 yrs. ago. I’m phsically fine just trying to understand the Health Insurance problem in America and my life for the last 2 yrs. Today is 9/1/2012 chk out story on CNN.com about woman dying because of H.I. or lack of, leaving unbelievable debt after trying so hard.

  28. Tracy October 30, 2012 at 2:22 pm #

    Hi, I’m the fifth generation of women in my famly to develop BC in their early 40′s. None of my predecessors has lived beyond 50 so it’s a little concerning to say the least. I’ve been having mammos since I was 30. Had one in December ’11 – clear result Jan ’12. I noticed what looked like a shadow in the bottom right quadrant of my right breast in May this year – poked and prodded around in that general area and thought I could feel something different under the shadow. Sure enough it was breast cancer – 2 cm’s of it, grade 3, HER2+ marching relentlessly through my breast. It didn’t show up on mammo and nor did the additional DCIS and LCIS festering away in there. So 5 months down the line I’ve had mastectomy, immediate reconstruction with ADM and silicon, have been tested for BRCA (negative – they don’t know why breast cancer is so prolific and deadly in my family) and I’m now 1/3 through FEC-TH chemo and herceptin. Next year, once chemo is over and I’ve recovered sufficiently, I’ll be booking in for prophylactic mastectomy and reconstruction of the left side followed by prophylactic salpingo-oophrenectomy. I have so much still to look forward to! I thank my luck stars that I trusted my instincts about the shadow because at the rate my cancer was developing I’d probably have been at stage 4 by the time I got to my next mammo in December this year. I live in the UK. Screening doesn’t normally start until age 50 – not much use to the women in my family but not much use anyway when BC doesn’t get picked up!

  29. lemonadefund November 10, 2012 at 11:35 pm #

    Hi. This is a topic that is of great interest to me. Multifocal lobular breast cancer found on my tenth routine mammogram. Went in thinking the mammogram was just a yearly female bother, suddenly they were doing an US, then needle biopsies on the table. MRI found second smaller tumor which didnt show up on US or mammogram. No family history. No lumps. No dimpling, nothing. Would never have been found by BSE. I also have always been told I have dense breasts, but was never told that that put me at higher risk for BC. I sometimes stretched a year between mammograms to two, but if BC has taught me one thing it is…don’t look back, do as well as you can from this day forward.

    In truth I credit the fantastic mammographer with this save. It was my first time going to a new hospital and I think she was just smarter and better than the people who had been reading my films prior. She wont tell me, as i think she doesnt want me to feel badly, but my suspicion is that the ILC could have been seen earlier. It is usually slow growing, but hard to see. I was so incredibly blessed that even though it was invasive, it was early stage. Had a unimastectomy (dont even ask about the weirdness of being lopsided; still debating reconstruction and if, then what kind) oopherectomy, tamoxifen and will switch to an AI soon.

    So I would add to the discussion here that even if you have to pay out of pocket once a year, go to the best breast center you can find. I am convinced that the level of expertise of those reading our mammograms varies greatly and is critical. Thanks for starting this discussion. Wishing us all the energy to help each other and good health.

  30. Coach Lin Elliott July 23, 2013 at 1:59 pm #

    Similar story here. I too found my lump which even the diagnostic (not screening) Mammograms could not see??? They were the last mammograms I ever had, dispite the constant nagging from my cancer doctors. I am very concerned with the amount of radiation we are expected to endure but what really got me, was the complete inadequace of mammograms.

    10 women are misdiagnosed for even single life saved. This is not in my mind any way acceptable AND these machines cause cancer……….dont ever doubt that!

    I now pay to have a 3D Ultrasound ABUS ($300) once a year instead. NO Squashing, NO Radiation, NO misdiagnoses………….& results more accurate than an MRI. Its a win win and well worth the money. Plus for anyone who is near or can get to Toronto, I have coupon’s giving you a $100 DISCOUNT.

    These 3D ultra sounds are relatively new and have been passed by FDA, HealthCanada, NHS and others; so far just for dense breast but that will change. I also think you will see insurance companies paying up in the not too distant future but for now, I feel $200 is a small price to pay for piece of mind and a healthier more trustworthy way forward.

    (You can read more on my blog about this should you be interested.)

    Coach Lin

  31. Robert Gaunt September 11, 2013 at 11:21 am #

    Hi
    My sister had an annual ultrasound and They found a small ‘ nobule’.
    And ( this is part of the situation that concerns me) they didn’t inform us until 6 months later, that something was found. Now they recommend that she make another appointment to get another ultrasound.
    My sister lives in Canada with my mother, she is mentally disabled.
    Not sure what to do if something is found? I am living in Australia.
    Cheers
    Robert

    • singleshot1 September 11, 2013 at 3:30 pm #

      Thanks for the note, Robert. That sounds confusing and distressing for both you and your family. I’m not a doctor so I can’t really speak about ultrasound findings or nodules or any of that. But from what I’ve experienced — and from other survivors tell me — if there’s something wrong, the health care folks let you know pretty quickly. I had a raft of tests after my BC diagnosis and after my CT scan, I was told I had several nodules on my lungs. But they haven’t done anything about them except check them via CT scans every year to make sure nothing’s changed. You might want to check out a few breast cancer websites and see if you can find more info. Here’s one where you might be able to get some answers about the nodule. http://www.bcsmcommunity.org/ Talk About Health (www.talkabouthealth.org) also connects people with a variety of doctors/oncologists, etc. Good luck and best to you and your sister. –Diane

  32. Coach Lin September 11, 2013 at 5:32 pm #

    Hi Rob, my cancerous lump was labled suspicious by Ultra Sound, not Mammogram that missed it. I live in Canada also and the care here is second to none, so please try not to worry to much. It is probably good that they are airing on the side of caution, way too many are over treated,. but if you would like to talk more please do contact me or indeed ask your sister to.

    I also have access to discount coupons for Canadians to get the new 3D Ultra sound scan (ABUS) which is more accurate than MRI even. I would be happy to send one to your sister. A 2nd look could help allieviate your concerns.

    Yours Coach Lin

  33. Linda Bell February 3, 2014 at 10:29 am #

    I was 64 when I had a double Mastectomy (my choice). I am not sure that my breast tissue was dense but they were fibrocystic. I ALWAYS had my mammos and checkups
    performed in a timely fashion. I also did self exams.
    My lump was located in my armpit. It was more like an irregular thickening so I assumed that it was just an extension of my ropey breasts. I continued to feel that lump for a LONG time before I decided that I should get it checked. I FOUND IT. The doctors missed it and so did the mammos! You must know that you are in charge of your own health! I worked in health care and I still trusted the system more then I should have.
    Invasive Lobular Carcinoma -1.8cm in greatest dimension -lymph node neg – er pr pos -
    stage 1- Femara was my only treatment. SO THANKFUL!!

    • Laura Siekert July 14, 2014 at 12:32 pm #

      I am 62 with new diag of lobular stg 4 BC and have done the ultrasound and mammos every year and out of the blue without incident I broke a collar bone. Never in my life have I had a bone fracture so it was odd, neg x ray and neg MRI for the collar bone but lots of pain in the area. Six months later I got a biopsy for the right breast and return a diag. of stg 4 mets to the bone. This was in feb 2014. I was told they often see women with lobular stg 4 as a first time diagnosis due to difficult detection. Otherwise no medical issues or medications. Why are these results OK with the medical community. Very little they can do with me now. Mastectomies are not an option. Too late once it spreads outside. No idea how long I have. Any one where I am?

      • SingleShot/DoubleWhammied July 20, 2014 at 11:34 am #

        So sorry about the stage 4 lobular diagnosis, Laura. I was diagnosed stage 3 lobular so we’re not quite in the same boat (yet). But every one of my doctors referred to lobular as a “sneaky” type of breast cancer so part of me keeps expecting it to sneak back, despite all the treatment (surgery, chemo, rads). Mastectomy is no picnic so if you don’t have to go that route, that’s something. No medications, though? Most of the stage 4 BC gals I know are on some type of chemo (often a pill form). I’m not sure where you live but if you’re near a large cancer/treatment center, there may be clinical trials available. Also, are you on Twitter? If so, you might want to connect with @jodyms (Jody Schoger). She runs the #BCSM (breast cancer social media) tweet chats and is also a lobular gal. Here’s the website: http://www.bcsmcommunity.org/ You might also want to check out the Inspire – Advanced Breast Cancer Community’s forum. Here’s a link to that: http://www.inspire.com/groups/advanced-breast-cancer/ I’ve found it helps a lot to connect with others, compare notes and just generally surround myself with as much support/information as possible. Best of luck to you, Laura, and thanks so much for stopping by.

        Your lobular sister,
        Diane

      • Susy Gibson July 21, 2014 at 8:16 am #

        I’m sorry about your diagnosis. It seems you were doing everything right. I was being checked every six months because of fibrocystic (dense breasts) and in the interim of six months, where I was told that I had a new benign lump it turned into a mastectomy. The real truth is the only accurate diagnosis is an MRI, but insurance companies do not want to pay for it. I understand anger directed at your doctors, but it is really the insurance industry. A mamogram will not save your breast, but it might save your life. I wonder where you were getting your mamograms and who was reading them, but that kind of thinking won’t help you now, I just want you to know that Miss-Diagnosis happens all the time. Mamograms generally don’t detect anything under 2 mg. Ultrasounds are better.
        MRI’s are tops. You may have heard about false positives on MRI’s. What they don’t want to discuss is the false negatives of mamograms.

  34. Jo October 8, 2014 at 7:23 pm #

    Hello sisters,
    My 2.6cm IPC (intracystic papillary carcinoma w/focal invasion) lesion dx’d by US guided core bipsy by was found during a self-exam, but it didn’t show up in mammography screening that same day due to my dense breasts. The lump was only visible in ultra-sound & by 3D tomo, but barely visible in the highest zoomed closeup diagnostics, even though I could feel it. I’m guessing it’s a grade 3, stage II due to it’s faster growth, although we won’t know for sure until after they do my lumpectomy next week.. 6 wks of rads to follow regardless of my nodes. Hang in there sisters, none of us are alone, and we’re always too young to face this.

    • SingleShot/DoubleWhammied October 12, 2014 at 12:30 pm #

      So sorry about the diagnosis, Jo. And best of luck with the lumpectomy and the radiation treatment. I tried to stay as active as possible through rads and I think it really helped to counteract the fatigue. Walk/run/bike/dance – do whatever you can. Also, keep your chest moisturized/slathered in lotion and your skin will have an easier time. You hang in there, too, sister.

    • Susy Gibson October 13, 2014 at 9:27 am #

      My April 2012 mammogram was clear, yet by October of 2012, it was 1.5 mm. So in April between dense breasts and whatever they missed it, (An MRI would not have missed it, since the MRI is was discovered the second lump). I am interested in legislation that would require the Dr.s in the State of Florida to inform a patient within 24 hours of the diagnosis. THEY KNOW, and some of us are driving ourselves to their offices unaccompanied. My breast surgeon only informs her patients on Thursday. That is just for her convenience.
      I never had a problem with the insurance getting the sonograms though. If your insurance does not cover it, women should consider getting it done anyway, although I don’t understand why it wasn’t covered. It’s always been covered for me. And if it wasn’t you can negotiate the price with the doctor. Even if they say no, it makes them squirm. I asked for a 50% discount on my mammogram and they acted like I was kidding. I was not. They said they would have to “get back to me”, that no one had ever asked that question before.

      A ha… Like I believe that.

      and you are right, they do not want to discuss the false negatives….

      Why are we not being given the option of an MRI?

      Sig

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Follow

Get every new post delivered to your Inbox.

Join 202 other followers

%d bloggers like this: