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Posted on: Nov 16, 2011 07:53PM
I wanted to add to the debate on letting people know whether or not their breasts are dense. I am thinking what other information should be included in the report to help women in their decision making.
For example, it was a total surprise to me that a palpable lump may not show up on a mammogram at all. I went to a very good place to have my mammogram done, but the only warning I saw posted all over was that I need to be sure my insurance will pay for the mammogram, otherwise I would be responsible for it. Nowhere did I read the warning, if you have a palpable lump, please let us know because there is X% chance, we won't see it at all on the mammogram.
Also, they collect all this information about me and my family history when I go for a mammogram, why is not there a computer program to calculate my risk of having breast cancer not detected by the mammogram? Why don't they give me a report, given you density, your breast size, your weight, etc. we are X% certain that you are clear. And given that your risk of having cancer is Y%, additional screening with u/s would cost $z and increase this certainty to Z%.
I think such a report could be quite useful. I am kicking myself now for not knowing that it is possible to have a palpable lump and have mammogram not show it. I felt something about a year before I was diagnosed, but I went for a regular mammogram. They said all was clear, and I relaxed. 10 months later when the lump got bigger I went to get it checked, and that's when I discovered it was not showing up on the mammogram at all.Log in to post a reply
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Nov 16, 2011 08:41PM AnneW wrote:
A diagnostic mammo for a documented breast lump should be covered by insurance, regardless of one's age. It is no longer a routine screening.
When the palpable lump is a part of your imaging histroy, the radiologist always addresses it in one way or another. (or at least s/he should!) If no corresponding mass was seen on mammo, the almost always classify you with a high BIRADS score, meaning further follow-up is indicated. They do that to cover their butts, but that's exactly what the person who ordered your mammo in the first place should do.
In other words, if you you have a palpable mass not seen on mammo, then the radiologist should recommend either U/S or MRI. If they don't the person who felt your lump and ordered the mammo is obligated to do a further work up, or refer you to a surgeon. Telling a woman with a lump to "wait a few months" when no other work up has been done is, to ME, negligent.
But, many women who have been told to get rechecked in 6 months don't come back for a year or more, and are mad because now they have a higher stage cancer.
Bottom line, mammos are NOT definitive. The media plays them up way too much as a way to "catch" cancer early. For every woman who had her cancer diagnosed by mammogram, there's another who did not.
Nov 16, 2011 09:27PM dense wrote:
That's exactly the point. I just came in for a routine screening mammogram. My breasts were normally lumpy, but one of the lumps felt a bit weird. When I got an "all clear", I just assumed I was worried unnecessarily. With all the advertisement about mammos, I have assumed that they were able to see this lump and that there was nothing suspicious. In other words, I never understood what can be expected and what are the limitations of this technology. And I think that it should be explained to us when we are screened. And just like they make us sign all these forms for financial responsibility, they should put as much effort explaining the limitations of this technology and how a particular patient would be affected by this limitation.
So for example, if my breasts are extremely dense, they should tell me. "You have had a mammogram, but because your breasts are so dense there is a 5% (or whatever) chance that at this point you have a cancer that cannot be seen with a mammogram."
I don't know -- maybe it would make everyone crazy to have that information. But I think there has been a lot of information about false positives, but much less about false negatives. There is some literature that they give in the screening center about mammograms not finding 20% of cancers, but somehow I have always assumed they were talking about cancers that were very small, I never imagined it would be something that is palpable. And I think I am not unique in that misunderstanding.
Nov 17, 2011 05:25AM mom3band1g wrote:
My radiologist from my mammo told me my lump was nothing because she couldn't get it to show up. I was told to come back in 6 months....if I wanted. Seriously! No referal to a bs, no mention of dense breasts, nothing. I was very angry about that but am thankful my gp sent me on to a bs.
I, too, never imagined that there was even such thing as false negative (especially with a palpable lump).
Nov 17, 2011 02:53PM AnneW wrote:
A radiologist won't refer you. Not their job. What SHOULD be done, though, is make a suggestion on your mammo report regarding further evaluation for the palpable mass that doesn't show up on mammo. Your GP did the right thing.
All my mammos going back the last 20 years have a disclaimer at the end of the report saying my breasts were dense and therefore a negative screening may not be accurate.
I wonder if the question doesn't boil down to whose responsibility it is to discuss the chance of cancer with you...the radiologist reads the image in front of him and reports on it. Most don't want to get involved with telling you risk percentages, etc. It's not their job. What IS their job, to me, is to say, "Hey, we couldn't visualize this paplable mass on mammo. We need to get you scheduled for an ultrasound."
Nov 17, 2011 03:34PM dense wrote:
That assumes a radiologist knows you have a palpable lump. What I am saying that I did not understand the technology. I felt a lump, but was due for a screening mammogram anyway, so when the mammo gave me an "all clear", I assumed it was nothing serious. So what the technology can and cannot do was never explained to me.
What I am complaining about is that the screening center has flyers all over explaining my financial responsibility. And the media is advertising everywhere that mammography can detect lumps before they can be felt. But until my diagnosis I never realized that a palpable lump may be mammographically opaque.
Apparently I am not the only person who was ignorant of that. My ob/gyn just told me of another patient of his, 35yo. She came in for a regular exam. He noticed a lump. He told her about it, and she said, "I know. I was just in for a regular mammogram and it is all clear." He sent her back and it turned out to be cancer.
I believe it should be the radiologists job (or the technicians) to explain the limitations of their technology and to warn women that if they have a palpable lump they should not assume it can be imaged on the mammogram, and if they are the ones that found it, they should bring it to the radiologist's attention.
When a physician finds a lump and sends you for an evaluation, that's one thing. But when you find a lump yourself and it is close to the day of your screening mammogram, an "all-clear" mammogram may give you a false sense of security and delay diagnosis.
Many women self refer for screening mammograms, therefore they need to be informed about the limitations of this technology.
Nov 17, 2011 04:15PM cp418 wrote:
I have several "mammogram" form letters stating I had normal mammogram and no evidence of cancer. There is no mention of Breast Density any where. I happened to find an old letter/report from 2001 stating I had Moderate Dense Breast as a foot note. It was never mentioned or discussed with me as concern in viewing mammograms. I was clueless and now know breast density is a risk issue. I am finding some doctors do not want ot discuss it in defense of their screening facility. IMO that is how my cancer was missed until it became larger and in the nodes.
Nov 18, 2011 01:57PM blg wrote:
I was very interested in reading all of your opinions. I and my Dr. both felt a palpable lump in my left breast. It didn't show up on the previous mammo nor the diag. mammo which was done after finding it. That led to an US that showed "a very dense" area. Which led to an MRI that didn't show anything. That was 6+months ago. At my annual exam a few weeks ago I discussed it with my Dr and said I wasn't comfortable with the inconclusiveness of the testing. I'd have been ok with them saying, "oh, we see it and it's just a (fill in the blank)". But that nothing shows up and both I and the Dr feel it... it concerned me. He agreed and referred me to a BS. And the BS felt it too and arranged for an US that day and said if the US detected it this time, he'd go ahead and do a US guided biopsy. Of course, it wasn't seen. So I have the option of going back to the BS for a recheck in 3 months or he said he'd do an excisional biopsy now if I wasn't ok with waiting. He said given the feel of it and that it wasn't detectable on even the MRI led him to not be concerned. He suggested maybe a stretched ligament (i think that's what he said). He didn't brush me off in any way and didn't make the option of the exc. biopsy seem silly. I was leaning towards waiting the 3 months but in reading your posts, I wonder if I shouldn't just get the biospy done now. I think when I go back in 3months that's what would happen next anyway. I am interested in your thoughts if anyone doesn't mind giving an opinion. Thanks!
Nov 18, 2011 04:22PM dense wrote:
I am not exactly in the same boat, because my tumor could be seen with US and MRI. Just not with mammography. Also the tumor felt different from my other lumps. There was sort of a hard center to it.
Best wishes. Sorry that I could not be of more help.
Nov 18, 2011 05:27PM theresa45 wrote:
My tumor did not show up on diagnostic digital mammogram even with a little metal tag marking the palpable lump. It did show up on both US and MRI. I also was not told about the increased risk of dense breast tissue even though I have a family history of breast cancer. Fortunately, I was sent for a biopsy right away.
Nov 19, 2011 06:12PM Outfield wrote:
I just wrote all this and somehow erased it. I'm going to try again.
I get what you're saying. It took me reading your series of posts, but I get it now. I agree.
Anne is correct, your mammogram shouldn't have been considered "screening." If there is a lump, the mammogram is considered "diagnostic," and a low BIRADS score on a "diagnostic" mammogram does NOT mean evaluation is finished.
But how the heck were you supposed to know that? Why were you put in the position of being the one supposed to know that? I totally agree there should be something on the mammogram report. There is at my institution. I always thought it was there to remind providers as well as patients, and I think it's really important.
The institution where I had my mammograms also did something else. When I checked in for the test, I filled out a form that asked if I had found any lumps or had any concerns. If I had checked "yes," this information would have been passed on to someone clinical, who then would have told me that I needed evaluation and hopefully referred me to an actual provider. It might also make sense for the technologist taking the images to ask if you have any lumps or concerns. If the answer is yes, the technologist shouldn't be the person resonsible for counselling you what to do, they should only be responsible for informing a provider. If you have a lump, you need someone coordinating the evaluation. You shouldn't have been expected by your medical system to do it yourself, which is basically what they did.
I really worry about the whole "pinkwashing" movement misleading women about what mammograms can/cannot do. It's really not that great a screening test.
BTW, my own screening mammogram was useful only as a baseline to see how quickly my cancer had grown by the time I found the lump and had a diagnostic mammogram. Nothing on my screening, then a large concerning area on my diagnostic 8 months later. I was diagnosed at stage III, my older child was not yet 3-1/2. Am I bitter? Yes, that I have a crappy diagnosis, but not about the mammogram. I knew at the time it was imperfect, and I had no reason to be screened with any other imaging. In this day and age, my cancer had to wait for my fingers.
Nov 19, 2011 08:24PM thatsvanity wrote:
My lump didn't show on a mammogram or ultrasound, so the doctor did a needle biopsy and there was no fluid, so my doctor removed the lump surgically and sent it to a lab. The pathology report was atypical lobular hyperplasia. I am so grateful to the kaiser doctor who removed that lump. He could've waited but he didn't. Then he offered me tamoxifen, or increased imaging, or mastectomy and I chose preventive mastectomy. That was my second mammogram Ive ever had but the lump was felt by me and my husband, while this was going on my baby sister had only 3 months left to live as she was dying of met BC, she implored me to take care of my lump and I did. I never knew my dense breasts cannot be imaged. I am 45 and my sister was 42 when she died.
Nov 21, 2011 07:00PM Fearless_One wrote:
My tumor was missed by 4 years of digital, diagnostic mammos. I am grade 3 density. Too bad I didn't know that before. Grade of density should be included on ALL radiology reports after mammo (there are four grades).
Nov 22, 2011 03:57PM dense wrote:
Suppose I went in for a screening mammogram and got a report: "In the last 5 (or whatever years) we screened 5000 women of similar age, breast density, and breast size. Using the equipment at our center in the last 5 years we diagnosed 100 women of similar age and breast density with breast cancer. Of these 5 were diagnosed with non-palpable lumps using screening mammograms, and 95 had palpable lumps at the time of the diagnosis. These lumps were not detected by our screening."
The centers that we go to have this data. And I think that's the kind of data they should provide us. Not just "you are grade 3 density". I cannot make any decision based on knowing what is my density. I need to know what are the capabilities of their equipment before I would decide whether or not it is worth for me to continue screening and what type of screening I would benefit from.
I think if we are going to campaign for something like disclosure of density, we should campaign for actionable information.
Nov 22, 2011 09:50PM Outfield wrote:
Did this thread get moved? It doesn't seem in the right place now.
I actually disagree with the recommendation of your last post. I agree centers have data they could use to make interpretation of the report easier.
But the "palpable lump" part shouldn't be part of "screening." There's a huge difference. A palpable lump turns the mammogram into "diagnostic." To some extent it doesn't matter if there is something seen on diagnostic mammo or not. There is ALWAYS a next step in the evaluation after mammogram for a palpable lump.
If a woman has found a lump, someone needs to know about it besides the woman herself. That's the bottom line.
While I agree women need to know as much as they can, so they can advocate for their own best care, they shouldn't be put in the position of having to know diagnostic algorhythms off the tops of their heads. Which is what you need to know if you are managing the evaluation of a palpable lump.
I think all this emphasis on mammography is neglegence on the part of the advocacy community, if it's creating the false expectation that mammograph can rule-in or rule-out cancer.
Nov 22, 2011 10:10PM cinnamonsmiles wrote:
My son was born in 1994. My milk never seemed to totally dry up on the right breast, never really thought anything of it til 2007 when I had a green discharge, but only when squeezed. Went to my family dr. who referred me to get a mammogram and to what I think was a surgeon. He couldn't get the green fluid to come out and I was too timid to show him how. His words to me...well don't let your boyfriend play with your breasts like that if you get a green discharge. Fast forward to late summer 2011, the green discharge turned bloody. Since no one believed me the last time, why go I thought. In October 2011, I found the breakfast sausage like lump which turned out to be cancer. I don't know if I have dense breasts or not, I never asked but assumed I am after reading things online for the past year. Had they done something and not blew me off four years ago, I am sure they would have found at least precancerous cells in that breast since the green discharge came out the same place as the bloody discharge.
Shame on the medical field for making "us patients" jobs and not patients!
Nov 23, 2011 11:49AM - edited Nov 23, 2011 11:51AM by dense
The problem is that just 10 months before my palpable lump, I had an "all clear" on the screening mammogram. And supposedly my cancer is slow growing, so the 4+ years of screening mammograms were useless. The other issue is that in fact I felt something different in my breast right before the previous screening mammogram (10 months before I was diagnosed). But when the screening mammogram said, "that is all clear", I assumed I was worried unnecessarily. I am, of course, becoming much more of an expert on mammography and its limitations now. But until I was diagnosed with cancer I had no reason to be one. When I used to go in and get mammograms, I put a lot of trust in their usefulness, as I think many women do, due to all the advertisement. I think I would have benefited from knowing the facts. Although not everyone is quantitative, a good number of people are, and having more transparency about the service that is sold to us by the media and the medical establishment would be benefitial.
Besides the quality of mammography in general, we now have no idea how good are the places where we go to get our screening. As individuals we can only judge how long we waited, how comfortable were the robes, was the technician nice, how promptly they sent us back the letter. And while all these things are important, ultimately we are interested in the technical expertise, and that can only be judged from aggregate numbers. These numbers are available, and should be available to us. So that if we wanted to, we could use our own judgement to make the decisions about what centers and what screening methodolgies (if any) are worthwhile for us.
For example, if I knew that that 50% of breast cancers in dense breasts did not show up on mammograms until they were well past 1.5 cm and basically had to be treated with chemo, while most cancers became palpable at 1 cm, I probably would not have assumed that the previous screening mammogram meant an "all clear". I might have also chosen not to get mammograms every year, but would have been a lot more vigilant about self-exams.
Nov 25, 2011 09:38PM Tenmom wrote:
I'm in the waiting process right now. Found a lump three weeks Sunday. I wanted to add to this discussion.... Did you tell anyone there was a lump? Just wondering. I am like you, they found no lump on mammogram: they only found it when they did ultrasound. The mammo nurse did not tell me this: my surgeon did when I had biopsy done. But again I went in there and they knew I had lump. So when they didn't find it, they did ultrasound. Mine is very close to skin. I had no idea that mammogram couldn't find everything and mine was diagnostic. Actually they found two on ultrasound. Neither one was found on mammogram. It makes me want a breast MRI on both breast. Of course still don't know what they are yet so I may get my wish if the results aren't good. Your right, we are clueless. But every women should know this. Education education education!!!!
Nov 26, 2011 10:58AM - edited Nov 26, 2011 10:58AM by SarahsMom
Hi dense, I have one breast that is very dense, two areas of increasing thickness (not shaped lumps, but areas). I am 46 so my breasts should be getting less dense (like my right one, which is behaving perfectly well :-) Anyhow, my mammo report from the radiologist always listed my density category as 50-74% so at least I know that factor.
Over to risk:
www.cancer.gov/bcrisktool/ does not talk density
www.halls.md/breast/risk.htm does factor in density
These aren't perfect tools, and many women who are low risk find themselves with BC and those who are high risk may never develop it, but at least there are factors to consider here so people can make smarter decisions about their own health instead of being at the mercy of a cold, indifferent system that like to lump us all into categories.
I am sorry for your diagnosis and I have to say - this is the exact scenario that keeps me awake at night. Sending you a hug.
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