Intramammary Node...
ok... so recently I found out the 1cm mass they found in my breast was not just "standard" tumor, but an abnormal intramammary node. Instantly they diagnosed it as Birads II, which I've read online is the standard instant diagnosis when mass is intramammary node (and has fat still). Mine is 3cm from nipple in lower outer quadrant around 8 o'clock. They are clearly not pushing biopsy, because their standard protocol claims it's benign - no matter what. HOWEVER, I am not a "standard" person and do not like being so easily dismissed LOL (Haha it makes me think of the breath-mint commercial with the girl and the unicorn)... Therefore, I research and ask questions... In my research, I tend to NOT read standard articles everyone copies and pastes to their websites, rather I look for actual doctor reports and medical reports written by doctors/pathologists regarding STUDIES done. In the information I found, it said that of all the intramammary nodes found (that were at first diagnosed as the average, benign, Birads II), upon actual biopsy for study, 23% of those intramammary nodes proved to be positive/malignant... In their study of over 60 people that has "benign" intramammary node, 20 of them were actually malignant! 23% is not so easily dismissable, if you ask me... It's not like reading malignancy was found in only 1-5%. I pushed my doctor asking for biopsy anyway, regardless of standard Birad II being the diagnosis... And while my doctor didn't say ok, he did put in referral for MRI of both breasts. So, at least I'm not being completely dismissed at this point (perhaps he knows my insurance requires all imaging testing possible before actual biopsy? Who knows?). I am currently waiting for my period to schedule that appt, because I guess they have to schedule it so many days after you start your period...
So... Why I am here posting this: has anyone experienced being told their intramammary node was Birads II after mammogram/ultrasound, only to find out later it was actually malignant??? With 23% being such a high number, I think it's an important issue that SHOULD BE discussed more, to bring about awareness.
Thank you for any feedback/time!
Comments
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Can you please cite some of this information that you read to get to the 23%? (especially the study that misdiagnosed 20 folks) thanks
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Everyone has inframammary lymph nodes. They are just noted when they are observed on imaging. They have a characteristic appearance when they are abnormal looking. Apparently yours appeared normal
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MTwoman... I will try to find what I found a while ago again and come back and post it... It was not easy to find that study in between the hundreds of articles that just state the "norm" like almost verbatim on every site that's been preached to us for decades...
To the Dallas chick and any others like her... No my node was NOT normal. In fact, I just said that in the first sentence. Of course everyone has intramammary nodes. Why are you really replying like I'm ignorant? Forgive my impatience with you, but you literally didn't read what I said, and then dismissed my situation altogether. I was put through 2 mammograms and an ultrasound and now waiting for breast MRI. Doctors don't do all that for normal nodes. In the first sentence I said it was an ABNORMAL intramammary node. You really did not read anything I said.
My post is not for people who don't read but want to add their two-cents anyway, nor is it for people who want to just take the same old information that has been the "norm" for decades because of "old knowledge" and call that facts, when modern research is starting to raise red flags about circumstances "previously thought..." It is for people who care to look into the research and discuss their own experience. If you did not experience what my question was in regards to, why waste mine or other people's time when they are going to come to this thread for information themselves, and folks just wanna waste their time cause they like to hear themselves talk....?
So, to be blunt... because I posted this to help others gather information, not to waste their time or mine... Please don't bother replying unless you experienced finding out your originally diagnosed node first thought to be Birads II actually turned out to be cancer, know of someone who experienced the same thing, or if you are going through it now yourself. I don't need wanna-be doctors dismissing other people's lives, just because they feel like they always gotta say something on these threads.
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MYwoman... I am having a hard time locating the article discussing the intramammary node mimicing benign lesion and might have possibly mistaken an article talking about sentinel nodes for intramammary (was having to literally read tons of articles to even find some of the stuff I came across that raises questions). So forgive me, I may have got the 23% wrong about intramammary and it was really discussing sentinel... and it was the other article I was trying to reference... (and a little part of me figures a node is a node, period)...
I did find this article which has same statistics (20 women out of 64 is pretty close - so seems which lymph node may not matter (the only difference being the other article was literally speaking about benign tumors at original diagnosis being found to be malignant with biopsy at 23%). This article below also doesn't mention much else other than DCIS - when, statistically, there are other cancers that can change these over-all statistics - making malignancy higher rate; especially considering the higher rates are found more in agressive cancers... DCIS @ stage 0 is hardly aggressive compared to, say, mets from melanoma. In other words, a non-aggressive cancer was in 5% intramammary nodes of the 20... Leaving 15% for other cancers... But didn't say percentage for aggressive (odd?). Article:
"BACKGROUND: Axillary lymph node status is still considered the most significant prognostic factor for breast cancer outcome, and treatment decisions are based on the presence or absence of nodal disease. Intramammary lymph nodes (IMLNs) can be a site of regional spread. Is this a marker for more aggressive disease?
METHODS: We reviewed the cancer center pathology database from 1991 to 2005 for all cases of breast cancer with IMLNs.
RESULTS: IMLNs were identified in 64 breast cancer patients, with metastatic spread in 20 patients, and benign IMLNs described in 44 patients. Positive IMLNs were associated with more aggressive disease, including higher rates of invasive versus noninvasive cancers (5% ductal carcinoma-in-situ [DCIS] with positive IMLNs vs. 23% with negative IMLNs), lymphovascular invasion (55% vs. 11%), and a higher rate of axillary lymph node involvement (72% vs. 18%). Patients with positive IMLNs were also more likely to undergo mastectomy (75% vs. 54%).
CONCLUSIONS: IMLN metastases are a marker for disease severity; recognition of this may influence choice of adjuvant therapy. The presence of metastatic disease in an IMLN is associated with a high rate of axillary nodal involvement, and should mandate axillary dissection. Preoperative lymphoscintigraphy may help identify these extra-axillary metastases."
This is why finding abnormal intramammary node should not be so quickly dismissed. Yes, auxiliary seems to be the go-to node for breast mass.... Yet that is ignorant on the pathologist's/doc's part to assume it is a primary breast mass and look at an intramammary node as if it's only for breast cancer - especially if patient has been complaining about other symptoms the whole time. They are risking treatment of folks who could have mets from elsewhere, to where auxiliary nodes may never be affected. They SAY early detection is best, but I can't count how many stories I have read on these kinds of forums, where patients, or should I say VICTIMS, went to doctors several times for years saying "something's not right!" and was dismissed - and then all of a sudden they are diagnosed at stage 3 or 4. It's frightening all the people who know exactly what I'm talking about - early detection for MANY is an absolute joke, because the doctors were incompetant, and the patient knew more that something was wrong than all their years of study.
When I found this article, I was doing a search for "metastatic malignant tumors mimic benign..." However, this article never stated original diagnosis was benign or not, or if cancer was found elsewhere later. Perhaps I assumed, because of my search criteria; and because I had read elsewhere that all nodes that still had fatty helium are instantly diagnosed as BIRADS II... But other articles stated METATASTIC spread mimics benign tumors. Perhaps my worries read too much into the article, but still can't dismiss it altogether, based on fact I don't believe my breast issue to be primary (if it does turn out I have an undiscovered primary... Which I explain below:
One of the articles I read, that I am trying to find, stated that metatastic spread to nodes can even still have fatty helium. I will keep looking for you, though. I should state that I don't believe my breast issue is a primary, so my studies are all about metatastic tumors which often mimic benign - literally OFTEN. I have read folks can get benign tumors everywhere (like as if it "spread") and you can get the same symptoms of having cancer, but they are all benign; sometimes requiring removal because they grow or cause pain, etc. This could end up being my situation? Who knows? Still "testing." Our bodies are freaking weird! I actually have 3 suspicious moles I have to biopsy (one being done in a few weeks)... The other two need to be looked at more (only primary doc has seen them, but he requested biopsy of first mole right away - didn't even bother sending me to dermatologist first). Doctor is also having me do colonoscopy (january) and when I went to gastro to schedule, she wanted to do endoscopy, too, based on symptoms... Brother has stage 4 rectal cancer and he's 1 year younger than me. He was only age 38/39 when diagnosed just over a year ago. All kinds of cancers run on my mom's side (know for sure: lung, pancreatic, and one with all-over cancer with unknown primary... and now brother with stg 4 rectal, and all of a sudden I have an abnormal node in breast (along with other enlarged/hard nodes elsewhere), so I may eventually ask about the gene-testing, although I don't know much about it, and probably won't bother unless something comes up malignant, so I can let my children/sister know. Don't know father's history at all, because he was adopted. I also know for a fact that I have a large tennis-ball sized cyst on my spleen...still need to sit down with doctor and discuss the "next step." They need to drain it, if nothing else, because it's causing me pain, and could be the culprit of other symptoms I have (even though it wasn't deemed infectious). All of my gastro and breathing problems started not long after mole on my shoulder started changing/growing fast - and that's also when spleenic cyst began growing... As of now being told lungs are clear, yet 20-50% lung cancers get misdiagnosed, because a specialist in that field didn't review scans and a radiologist or doctor who specializes 'elsewhere' looked at it and then it was only found when it was too far to cure... Lungs hard to diagnose - so much overlapping. And small-cell really hard to find... (although I would still believe, IF my lungs were affected, it wouldn't be primary; so my biggest concern right now is possible melanoma mets to nodes/lymph system - thus explaining intramammary concern)... So, now node issues (breast and arms - and think they will find pelvic ones too), and within past few months: neck nodes being most recent). Shoulder mole that changed and doubled in size (almost 1/2 inch now) in about 1-1 1/2 years and in last month started growing upwards (taller) more really fast, is the one being biopsied at the end of this month. The mole is tan, Brown and "clearing-," and looks like two "pacmans" grew into each other. It seemed to have spread out and is now "swelling up" like it's getting thicker on surface.
The article(s) I'm looking for stated that all benign masses (that are not a primary) should be biopsied no matter what. It stated that they even kept their fatty helium in many (not most) cases. Many, though, as in a high enough number to be alarming... Problem is, if doctors have yet to know about, or find, a primary, all benign-looking masses go ignored (even if you suspect there is an undiscovered primary somewhere) and you aren't taken seriously... even though you know when something's not right - I mean... We KNOW our bodies. I swear it seems like doctors want to push only two diagnosis on people these days: depression and fibromyalgia. Pisses me off.... On top of all of that, I have persistent symptoms: like serious weight loss without trying or exercise (about 60lbs in about 9 months? If I eat super fatty/sugary foods in excess, I can make my weight maintain (don't lose but don't gain - when normally that kind of eating would make me put on 20lbs by now), but that's not good for me, so can't keep that up - and as the months go by... getting harder to find an appetite for even those yummy treats), night sweats, chills/fever, nausea, dizziness, terrible all-over-body itching (especially around mole areas or areas my nodes are swollen), breathing troubles, and serious fatigue, plus swollen nodes in several places, the neck being the worst that keep waxing/waning over past month)... And I know this is going to sound weird... But on the side where they found the abnormal node? I get funky armpit BO there like I've never had before (just that side), no matter how much I wash/deodorant. They said abnormal suspicious node, but benign cause of fatty helium... Been on antibiotics, also, but no changes... With that history, now you can see why I question other people's experience... Could really be nothing... but I'm a researcher-type personality... Agressively lol...
In the meantime I came across an article that says:
"Metastatic intramammary lymph nodes can lose their morphologic characteristics. At sonographic examination, when the echogenic hilum is absent, the metastatic intramammary lymph node displays a completely hypoechoic echotexture [4]. Associated with a round shape and well-delineated margins, it may mimic a benign mass and resemble a synchronous benign-appearing breast nodule in a patient with breast cancer."
I saw my node on the ultrasound... It looked like a bumpy rock. It was not bean-shaped or smooth, or oval, even... but round (a little taller than wider) and "lumpy-looking," as in: not smooth, yet defined. My son and I dubbed it my "boob planet." It literally looked like an asteroid in space lol. I have old lady titties and they are fatty, large and saggy, so my images come out pretty clear compared to women with dense or small, or youthful breasts.
I should have added in my original comment that I do not believe my breast tumor is a primary (then again I didn't think anyone who responded was going to say their node was primary either). My mammo said mass (node) was 1cm but my ultrasound said bigger... I saw they put bigger when watching her measure on screen during process (can't recall exact figure for everything like thickness, etc but pretty sure it was 1.6 or 1.8?). I do know that when I feel for it now, it feels bigger, like 1 1/2 the size it was before) and it's just been a month... So that makes me think growing too fast to be cancer?? ...but I also read that an abnormal node can develop a cyst around it - and that makes it even more a risk for "turning into" malignancy - I wasn't kidding when I say I am a serious reseacher/reader... I have literally studied a phenomenal amount of info ever since the mole-scare and node discovery); yet, for SOME reason, my pathology report (for last/most recent exam) doesn't list node size at all - and it's really bothering me, the lack of effort they are putting into my medical reports. Thus why I'm looking forward to MRI for more info in few weeks. Starting to feel like a guinea pig. Literally. I also have concerns they are milking insurance for all they can. I deal with govt-funded medical, and those clinics are suspicious, to say the least... MRI to be done soon, and it could very well be listed as BIRADS II, but, because of the service I'm receiving, I seek second opinion, just to be sure; and if nothing else, I will request follow-up in 6-12 months, unless my palpable mass gets bigger to where they need to review me again sooner. I figure if it finally ends up to be nothing (which we all hope for), if nothing else, my detailed search into my situation, and what I'm going through will provide comfort to someone else who may come across this post a year or 5 years from now... Or maybe, just maybe... Someone in the field of cancer will read these inquiries and it'll get folks to do MORE studies...? Just maybe? But again, for scared people I post, too, so they can have peace of mind... And see what someone else experienced. These forums help women/men for years to come, and I think that's great! I'm not stressing, like... I sleep fine at night lol, but I'm not one to just take the first person's word for it without checking further into it... If I didn't keep pushing doctors about back pain that they kept dismissing for three years, I never would have found out I had a twisted pelvis and needed spinal realignment (and possibly more she said, but right now we are adressing pelvic problems, and will later address the upper-back issues). My pushing eventually paid off on that one lol... And now they are putting my bones/disks back into place... They kept just wanting to push pills on me (covering, not curing) for years, and I hate pills. Telling me it was fibromyalgia! I already feel an inch taller and don't have the same pain as before (but still a work in progress).
Sorry so long - but that's what's behind all my inquiry... I will keep researching and get back to you if I find anything else... In the meantime, I'm still looking to see if anyone else has found out a benign intramammary node was actually malignant...? Or, for that matter if ANY node was first diagnosed as "nothing" but found out it was cancer after-all?
Thanks!
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Okay, so the first excerpt that you posted did NOT say that they were misdiagnosed. At all. It appears to be a single center retrospective database search to identify how many IMLNs were positive in the various patients seen at that center, based on the theory that those with positive IMLNs would have more aggressive bc. " IMLNs were identified in 64 breast cancer patients". Although there may be some parts missing, as that short a methods section is not typical of scientific publications. But what you posted DOESN"T SAY that those people were misdiagnosed. I actually prefer to read the entire article for myself, also noting in which journal it appeared and when etc. It is common practice here to give us the citation so that we can read it for ourselves (which many of us prefer) rather than give us excerpts. Like this: https://www.ncbi.nlm.nih.gov/pubmed/27818615 Would sure like to read through the articles that you're quoting, so if you'd care to post a list I will read them.
thanks
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