Mammogram Shammmogram.......Again
My regular mammagrams did not find my 5.2 cm tumor nor positive lymph nodes. In fact I had 3 mammagrams in the same year looking at microcalcifications "were probably begnign" and told to come back in a year. Well 4 months after my 3rd "normal" mammagram I found the lump that led to the diagnosis of stage III cancer, mastectomy, chemo, radiation and my becoming part of this "sisterhood" . What was the point of doing everything I thought was right, to prevent breast cancer? Anual mammagrams did nothing to catch this cancer before becoming a stage III bitch. Sorry for the rant. Has this happened to anyone else?
Barb
So now I'm scheduled for another anual mammogram and I'm getting anxious just thinking about it because last year they cleared me after watching those calcifications during the previous year when I was diagnosed with cancer on the other breast. I just can't trust them anymore.
Barb
Comments
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I feel exactly the same way. I'd only had 3 mammos because I'm 43 and had no areas of concern. I left those appointments every year since 2007 feeling like I'd done what was necessary to be vigilant and responsible, and felt good about it.
However (and that's a big however), even when I found that evil lump in October, the mammos couldn't see it. I could feel it, the docs could feel it, but two sets of mammos showed nothing.
Finally an ultrasound was ordered and it was seen, 3 different drs reviewed that and told me it was very likely a fibroadenoma and not to worry. Ob-gyn said get it out and have it tested to be sure. Did that and even when the lump was sitting on its own in front of the surgeon, he said it was nothing to worry about - looked benign. Less than a week later came the phone call that changed my life forever - "hello, you have cancer."
Had an MRI after dx and that showed all clear in both breasts, except for a tiny spot that was thought to remain after the biospy. Went back in 2 wks ago to get this tiny bit o'tumor out, only to find the lump was all gone, taken out the first time - but that some DCIS was found in that area, which I guess didn't show on even the MRI.
All this to say that I'm beginning to feel really uneasy about not only mammos but US and MRI too. Seems the MRI did not indicate DCIS. How am I to proceed now, is there a lot of DCIS? Is it in the other breast too, since they looked clear on the MRI?
IMO, there should be a more accurate dx tool or a comination of tools used to get a better, more accurate picture. I have my fingers crossed for this blood test in the news this week. We women have to feel confident in the tests, just like our medical teams.
Don't mean to be alarmist but this is my experience - if anyone has more info on dx tools and their relaibility, I'd love to hear it.
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barb,
same thing here, My mammogram, although it was my base at 40 was perfect.
11 months later, stage three, lots of nodes. Whats the deal? It really is concerning, I had a friend tell me today, I just got my yearly mammo are you proud of me. Well of course I am so happy she is doing the right thing by yearly mammos, but are the mammos doing the right thing for
woman.
I feel like all woman should at least be offered a dx ultra sound w/ mammogram. What do you think? barb this has bothered me so much since my dx, it's nice to know I was not the only one,
but, I wish they would have caught it sooner for all of us. Ladie's, I just want to tell you that you are all such amazing woman!!
Hugs
Faithful
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No mammos for me. My bs was trying to discourage me from a bilat by saying "we can catch early". WTH. Like the last time? Although in her defense she was talking about state of the art testing equipment in Seattle, which would be available to me for a $500 rt plane ticket from Alaska.
Sherri - good for you for being assertive and getting the care you needed.
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I've been going through the same thing. I have been having mammograms for 20+ years. DCIS was found on my very first mammogram at age 30. Had the lumpectomy and rads, then DCIS recurred six years later, so had a mastectomy. I was told at the time, that even though I had 'very dense' breasts, that the DCIS showed up clearly. So I had the idea in my mind that if there was ever a problem it would show up quickly on my mammograms.
Fast forward past normal mammograms for 14 years, then come to find out I've got a stage III cancer 8 months after my most recent clean mammogram. What a shock! How in the H did this happen! I had the idea that it would take a long time for a cancer to get this advanced, so how come no one noticed a thing on my prior mammograms? Part of me wonders whether it was there and no one noticed. I don't really want to think about that.
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I too went for mammo's yearly for 22 years then 2009,mammo showed enlarged nodes,nothing in breast,until mri.My thoughts WTF!What good are mammos catching bc early.On the other hand if I missed this last mammo (which I was going to skip)I would not be around today since it was so aggressive.Even after the way my cancer presented,my surgeon told a yearly mammo would be fine.(did not feel comfortable with that)My onco listened to my fear,and recommended mammo 6 months, then mri.
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Yes, years of mammos. Felt good that I was being so pro active in my breast health by getting anual mammos. Had one Jan 2008, they said come back in 2 weeks so we can look again at microcalcs. Went back Feb. 2 weeks later. They said come back again to check the micro calcs. in 6 mths. So I went back for another mammo 6mths later in August 2008. They cleared me and said come back in a year. 4 months later in Dec 2008, I noticed my other breast had an inverted nipple and lump underneath. Decided to have it checked out 2 weeks later by Gyno. She immediately told me she "didn't like what she was seeing " and sent me for an ultra sound and fine needle biopsy at the breast center that day. It was diagnosed IDC at least 4.8 cm and I would need a BS to consult on mastectomy. After surgery it was 5.2 cm stage 3a IDC with lobular features,.. What the hell. All those mammos and suddenly a stage 3 lump I discover on my own. October Breast Cancer month should stress Awareness of Self Exam over beeing lulled into false sense of security with mammos, in my opinion.
Barb
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Me too Barb,
The "classic" large, dense breast B.S. I had "clear" mammo's for years before my dx, including the year before. I always had a weird feeling that I would end up with BC for some reason though, and about 15 years ago was SURE I had it, without any clinical reason to believe it was there. So flash forward to 2009, and much like SherriG, I had a 6.5 cm PRIMARY tumor, plus some smaller ones on the same side. MRI lit up as well. DAMN it---WHY don't they MRI for women like us? I KNOW it's expensive but sheesh---it was there all along, and not one mammo picked it up. Again, like SherriG I decided on the bilateral mx (ended up having LDIS on the left side) for my own peace of mind.
Love,
Sharon
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Hi amig1-Your post touched me-fellow Long Islander who got the phone call no one wants following my 22nd annual mamogram. Starting at age 40 (50 was the suggested age at that time), this due to adverse paternal history, I felt that this was about as proactive as it gets. My first response to them was that it couldn't be more than 12 months old, but they then informed me that they had been watching the particular area for 2 years (I was never informed). By the time I was told, it was found to be invasive and in 3 different areas (lost both breasts in 5 surgeries and 3 biopsies in 1 year). Anyone else with experience like this?
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grannydinny, I was told that my tumor had to be "growing" for years, even as much as 10" but because it was such a slow growing cancer and I had such dense breasts is why it was not seen. I just cant accept that.
Barb
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I too was told that the cancer had been growing for several years....At first visit with onc, he put up the current mammo and the one from the year before and showed the differences to us....nothing the previous year...and also showed us the MRI I had after Dx...he spent 2+ hours at our first visit.....I had baseline at 35, mammo at 40 and maybe 41, then was pregnant and went a couple years without one...then I had 5 or 6 in a row at time of Dx....this was the first time I was ever called back!!! I really don't give much thought to how long it was there other than the fact that I was Dx stage 3!!!! I'm coming up on 5 years.....no mammos since Dx since I had a bilat....
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it is so frustrating to read all of this. medicine has failed so many of us! the screening methods simply aren't adequate for many.
i had a clear mammo in fall of 07- although the radiologist ordered a sonogram "because there might be something there" in right breast - all clear, told to return in three years because i was just 37 (albeit with a huge family hx - mother and aunt died of breast ca)...anyway, summer 09, i feel the lump, and voila - stage 3, one week before my 40th bday. happy birthday to me!
there must be a better way.
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Shanagirl, same here....I'm with ya.
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Me too. Every year like clockwork, got my mammo. "Clear" mammo in March; diagnosed Sept. It absolutely infuriates me. I had no idea mammos missed so many tumors. Now I tell every woman I know NOT to rely on just mammos - insist on a schedule of mammos/MRIs. My multifocal tumors had both DCIS and IDC. At some point along all those "clear" mammograms the DCIS turned invasive. So much for early detection. I would have paid for an MRI myself if I had known this possibility. And no one is accountable for missed diagnoses. Nobody. It makes no sense on so many levels. People complain about the cost of healthcare. Well, the cost of periodic MRIs (maybe every 2 years) does not come close to the cost of life-long treatment - surgery, radiation, chemo, hormone therapy, drugs (not to mention sustained emotional trauma on millions - those with bc and all of their family members).
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Hey Barb, add me to the list! Baseline mammo at age 35 & annually after 40 - age 46 had surgical biopsy for calcifications (benign) but breast got lumpier by the year even though mammos kept coming back "normal" - finally at age 50 went back to surgeon as I had developed a "2nd nipple" - he said it's probably just scar tissue but was he sheepish when it came back stage IIIC (promptly changed doctors). All my life I thought having dense breasts meant they were firm & sexy - thought it was cool when they said that - now I know I should've been scared iinstead. Well, no more mammos for me...
Julie
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Have you gals looked into thermography? It is especially helpful for dense breasts and it is safe, painless, and has a 90% accuracy if done with an experienced tech with the most up to date cameras. I will never have a mammo again, because they missed my tumor as well. The therm can be done more often and it is easy to monitor changes. My doctor sends me the pics and I can see for myself if there are any changes. There is lots of information about them if you check around the web. The reason they are not standard of care is because the mammo industry would go out of business if women knew the benefits of thermography. The industry even lobbied the FDA to take away the insurance code, which is really BS. But I just pay for my own because it gives me such peace of mind.
One more thing, if you have dense breasts, you really should look at taking iodine. Check out the iodine thread and go to breastcancerchoices.org for more info.
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Shanagirl I could have written your post:
My regular mammagrams did not find my 5.2 cm tumor nor positive lymph nodes. In fact I had 3 mammagrams in the same year looking at microcalcifications "were probably begnign" and told to come back in a year. Well 4 months after my 3rd "normal" mammagram I found the lump that led to the diagnosis of stage III cancer, mastectomy, chemo, radiation and my becoming part of this "sisterhood" . What was the point of doing everything I thought was right, to prevent breast cancer? Anual mammagrams did nothing to catch this cancer before becoming a stage III bitch.
Had yearly mammograms for 9 years, at some point before 10th mammogram I noticed some inversion of my nipple, so off I go to MD to get a script for a mammo, insurance not happy because it was 2weeks before due, eventually get insurance to agree. Yep, in less than one year I am a stage 111 bitch, and here is the kicker I also live in Monmouth County, NJ.
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I hear what you are all saying.......and there is a better imaging tool in the pipeline.Please read the post 'Gamma Ray Imaging'.It features an inspirational video and some hope for the future.
But I also have a sneaky feeling that too much radiation from all those mammos can actually cause a tumour to form.That's what I think contributed to mine. I am now very scared to have a mammo and very scared not to.
Sam
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Sam52-You are onto something. Read this:
http://preventcancer.com/patients/mammography/ijhs_mammography.htm
Is there a connection to the fact that the two counties that have the highest rate of breast cancer in the US also do the most mammos? I live in one of those counties. I asked my doctor this question. Her answer was "I don't know". Then she said it could be that we are better at diagnosiing. I am not buying it. The compression issue is not something to scoff at. Compression can injure sensitive breast tissue. Injured tissues damage DNA. Damaged cells are vulnerable to cancer.
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After 14 years and 14 "clear" mammos, I found my BC lump that propelled me into this odyssey. My BS said it could have been growing 5-10 years and about 30% of BC is "mammogram occult". I had never heard that term, EVER. If 30% of BC "doesn't visualize" on mammos, why is this not in the news? Fast forward post lumpectomy, SNB, AND, chemo and rads. Now my BS wants me to have a mammo+US every 6 months then an MRI every other 6 months. When I asked her why I had to have the mammo, not just the US she said if I get another recurrence it might be a different cancer that can be visualized. RIGHT! she also indicated that the insurance company wouldn't pay for the US unless I have a mammo. I am scheduled for mammo+US in March. I am going to probably go ahead with this first one so I have a baseline post surgery. Then I am going to fight for just US rotating with MRIs.
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I did not like the idea of more smashing of my already tender breast, nor more radiation so I have been doing follow ups with thermography. I love it. I can get them regularly and chart my progress. A good thermographer, with the latest high tech camera can detect 90% of tumors, as opposed to the 60% detected with mammos. And since breast tumors do normally grow slowly, a suspicious therm can be followed up by in a few months. If it looks more suspicious, then further testing should be done. This would eliminate so many false positives that lead to biopsies, which are also dangerous.
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Cite the studies that prove themography efficacy, please, Vivre.
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I found my tumor myself and after having a mammo I was told I was fine, all they see are calcium deposits in that breast and none in the other. I gave it 2 wks and the tumor was growing so, I went back and was sent to a BS who did a biopsy and MRI which came back + and showed I actually had 2 tumors. You would think after hearing "your good" after a mammo I should have been ok but I knew in my gut something was going on. I knew my breast better than they did, they had been mine for 34 yrs! I was also told my cancer had been there for years probably 8-10 and that my case was a-typical. What a crock...I didn't know this was so common either. Moral of the story trust your gut...it's the Lord speaking to you!
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Amen to that Jennyboog!
Barb
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I found my tumor myself (was too young for annual mammos) and even though I could feel it, the technician still couldn't find it on the mammo (they did find it with US and MRI). I will be having yearly mammo+US, and yearly MRI - so they will be checking me with one or the other every 6 months. But I agree, something more foolproof needs to be found.
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I am a strong believer than in everything you need to "trust your gut"....it is never wrong
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I don't know if sometimes our gut is our worry and we don't actually get it right. I am in a waiting period and getting checked every three months for a small lump deep down, not seen on mammo or us but i can feel it and two other docs. Not the bs though-Everything in me tells me it is a problem and they just don't know yet but until they can find it or test it we won't know. Fatty something she called it, if she is feeling what i am she says, but unless she can actually feel it and think it's suspicious then that's it. If i find out it really is nothing i would be surprised but then again maybe it is my worry not my inner voice-i just don't know. Wanted to add-this is for my own thoughts, i think most people do know when their gut is telling them-i just don't know if mine is right. I absolutely believe god tells us things and we need to listen. Sorry if i shouldn't post because i am not diagnosed.Sorry I did not realize this was in the stage 3 forum.
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Barb,
Thanks for posting your story and thanks to all the other ladies with your stories.....they sound just like mine. Years of clear Mammos, last one being 5 months before my diagnosis of Stage 3b IDC with + nodes.
There is a very interesting video on the DICS thread from Dr Deborah Rhodes addressing new imaging (MBI) for women with dense breast tissue.
With all the money being raised for "awareness" and Mammogram screening why hasn't any of her information been included in the education material.
It is either too good to be true or it is a matter of politics and big $$
I'm an OB RN and none of the Drs I worked with could even answer my questions re: dense breasts and effectiveness of Mammograms and why do they just send out that stupid little card rather than let you see the full report!
I am on the side of "trust your gut" also!
Blessings to all, Sharon F.
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I too am considered having dense breast and micro calcifications. So my upcoming yearly mammo next month is starting to get me a little freaked out.
Barb
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Add me to the "me too" group. 18 months after last "clear" mammo, mammo showed two masses on left and an architectural distortion on the right. US-guided biopsy on the left confirmed IDC, one tumor 1-1.5 cm and the other around 2 cm. They attempted to do stereotactic on the right but they missed the spot! So I go and interview surgeons aqnd plastic surgeons, make choices, and then deliver all my films to the facility I've chosen for their radiologists to do a second read. They call me in to do MRI and US on the right. They THINK that they MAY see something on the right - I actually had three radiologists in the room, staring at the screen and sayingv things about hoiw subtle it was. So they send me back for an MRI-guided biopsy, which reveals extensive DCIS and two "small foci" of IDC. Fast forward - I've had my BMX and get the final surgical path report. The two tumors on the left end up 1 cm and 3 cm - pretty much in the ballpark of what they had said, although I wish the one that's 3 cm had stayed at the original measurement of 2 cm. But the two "small foci" on the right ended up being 3 cm and 3.5 cm tumors of IDC. WTF??????? Mammos, US, and even MRI weren't anywhere close. I find this SO scary, both for other friends (and my daughters when they get older) as well as relative to future cancer surveillance - medical imaging just isn't what we all think.
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Well...I can provide a counterpoint. They called me back in due to an "Architectural Distortion" on my mammo which turned out to be a 1.4cm non-palpable IDC with some DCIS. Thanks to that mammo (and Kaiser, for calling me to remind me I was overdue to come in), I'm stage 1. No idea if/when mine would have become palpable but by then...I imagine I would be higher stage as many of you.
That said...I understand that architectural distortions are often overlooked, although they're having better performance from digital mammo systems. The DCIS was a surprise from the lumpectomy pathology. I'm scared that there is more cancer lurking that just isn't visible. I meet with my MO for the first time post-lumpectomy tomorrow...and I plan to ask for an MRI to try to make sure I'm clear and I will be asking for an aggressive followup approach going forward...
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