How long has tumor been there?
Hi everyone! I had very dense breasts and it seems like I get a different answer when talking to onc about how long my tumor was growing. Given the large 6 cm size after surgery, she thought perhaps between 6 months and a year prior it had started. But then I will read where others have large tumors but they have been told they probably grew for several years. Is anybody's onc able to put a definitive timeline on their tumor growth? Imagine it would also depend if ER/PR neg or pos and also grade? help?
Comments
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Shelly - I had "acute" dense breasts with benign masses in both breasts...I also had very high estrogen. My BS thinks mammograms missed my bc since 2010...I was dx in 2013 with stage 3. I was so pissed to hear this because if this is true, my grade 2 was growing and spreading for nearly 3 years.
I had a thermogram as an extra backup in 2012 and that too missed my bc.
I too find it confusing when I hear about bc growing for years...this doesn't make sense given the different kinds, hormone status, and grades of bc.
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Peace - so darn confusing as I've heard the oncs say the same standard line of 6 months to 1 year for others as well. I guess I don't really know how they can accurately say that. I used to feel lumps that would come and go and the doctor would always say it was hormones causing them, which yes was probably true, but who knows if those lumps went into hiding for years and years. And what you say about different kinds, status & grades should be relevant shouldn't it? Tells me there is a lot they're hiding.....or truly are just guessing.
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Different types (DCIS, IDC, ILC, IBC) have different rates of pressnting/growth. I think there is still so much that is unknown, unfortunately. I can only speak for myself - I never had any breast issues (no 'lumps' ever) before a node enlarged literally overnight. I'd had my annual mammo less than 6 weeks before and it was the same as had been 'forever'. It took me a week to see my PA (she was on vacation and I didn't want to see anyone else) nd had a new mammo, US and biopsies that afternoon with getting the path report the next morning at 8 - as expected IBC. 17 days later started neoadjuvant chemo.
There is so much that is unknown but I do not think anything was ever hidden from me or my Drs were just guessing.
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I had a very low grade rare mucinous 1.2cm tumor that was never felt by anyone. The radiologist told me it had probably been "nesting" in there for about 8 years! I had been placed on the 6 month watch for another area that turned out benign. When they reviewed all my MRI films, the only one it showed up in was the one six months prior and at that point it was just a very small shadow. I had been having ultrasounds as well.
It sort of freaks me out that it had been there so long however, I had no node or vascular involvement so it truly must depend on the histologic type.
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This whole subject is very confusing for me because my tumor was 5.2 cm with a low grade 1 status. The tumor was just under my nipple. I was told it was probably growing for 10 years!! I just don't know how this could be so because I had my yearly mammos and the year that I had found the lump myself, after having gone for 2 mammos watching me for microcalicfications and again a 6 month follow up. So I had 3 visits and mammos in the same year that I found the lump myself and ran to my gyno to have it diagnosed. I didn't find the lump until I had noticed my nipple was inverting and sometimes leaked. So upon self examining my breast, I found the lump under my areola and knew this did not feel normal. I don't understand how this was missed by me, and my docs and mammos.
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Skipper: So much more confused now because of what you say that your 5+ cm tumor had been there 10 years !! Mine was over 6 cm and had grades 1, 2 and 3. And even after the mammo and 2nd mammo a week later, the technician and doc still saw nothing and were about to send me on my way ! Felt like saying "are you f-in kidding me?" So I said yes I felt what I thought to be out of ordinary lump (I have very dense tissue), so an ultrasound was ordered same day -- which did see the cancer, but only maybe total of 2 cm according to the testing. So when I came out of surgery with that large of tumor, it shocked everyone. Onc told me I had all grades and that the tumor was actually laying more flat against my chest and on the MRI it even looked like a big scar of some sort. So they ask did I injure my chest in a car accident or something. I hope and pray for better testing soon for everyone's sake.
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i too wonder about this. In 2006 the surgeon was worried about my right breast Even though I had gone there because of a lump on the left. One mammo and ultrasound and several biopsies later I was told it was normal breast tissue. I did have however, very dense breast tissue. This was brought to my attention by the radiographer. Roll on 2012 and I have a whopping 6cm and some! tumour.
I did ask my surgeon was it missed and she replied with all those investigations - no. But I have also heard, like so many others that this tumour was probably there for years It troubles me too. I really don't know what to believe.
What are we to believe?
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Skipper -- I had a journey sort of similar to yours. I had been going to mammos for a number of years -- had had one negative biopsy 6 years ago. Had some callbacks for ultrasound/additional views, including a call back for the side with all of the cancer 8 months before being diagnosed. Was given the all clear and told to come back in a year. I had between 7 and 10 areas (second pathology review grouped some areas together), all grade 1. So -- how long had these little suckers been there?? When I asked my surgeon at the beginning of the process, he said that if you look at the previous mammo, now knowing where to look, you can see something. I had some reddish/brown discharge, which lead me to go see my family doc. The rest, as they say, is history! -
I have to add my journey here also. For at least 10 years I had had a mammo every 2 years. When I was finally diagnosed, the surgeon told me due to the type, grade and extent of spread, he said it had been there at least 8 years before they picked it up. So in other words the previous 4 mammograms had missed it. I have become wary of mammograms now and always have an ultasound also.
Ched
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wow amazing stories here, ladies. i had stopped going 8 years before dx. knew nothing about bc, but always got an ultrasound after. and always nothing. stopped going. they told me it was in there for 8 years too. thats so messed up that they were missed by mammos.
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Please pardon my intrusion on the Stage III forum, but I saw the thread and I have done a bit of research on the topic, so I wanted to reply.
As we all know, breast cancer is just an umbrella term; there are many different types of the disease, but they all share the same name. The traditional statistics that are thrown around, most often by breast specialists, is that a tumor has been there for 6-10 years. Well, the problem with that range is it relies on old data that was compiled when "breast cancer" was thought of as one disease. The data reflects a "traditional" breast cancer patient which is someone who is many years post-menopausal, with a Grade 1, highly hormone receptor-positive, HER2-, Luminal A tumor. Those tend to, but not always, have a very long doubling time (which is measured in days). For clarity, the longer a tumor's doubling time, the longer it takes to increase in size. In our case, as breast cancer patients, we want a long doubling time; a low or short doubling time means this thing is growing quickly. There are quite a few publications on the doubling times of breast cancer tumors and it's estimated that a Grade 1 tumor that is ER+/PR+/HER2- and in a post-menopausal patient (so, likely a Luminal A cancer) has a doubling time (DT) of approximately 180 days and sometimes quite a bit higher than that, many times upwards of 400 days. I read that the average DT for a Grade 2 cancer is said to be in the range of 120 days, and average for a Grade 3 is estimated at about 60 days. However, there are LOTS of variations in there based on hormone receptor percentages, abundance of HER2, patient's age, genetic factors, KI-67 score, etc. But, it's the more "traditional" breast cancer patient (the post-menopausal woman with a Luminal A tumor) that is referenced when we hear the typical "breast cancer takes 6-10 years to develop before it's usually big enough to notice." Those stats are a catch-all and don't take into account the more aggressive cancers. Being a BRCA1 mutation carrier who was diagnosed with triple negative that was also basal-like at age 34, I wondered how long this thing had been there. I knew not long because I could see it growing in the 5 weeks between discovering it and the excisional biopsy. I was reassured by my team at the NCI CCC where I had treatment that it was less than a year old because of my particular circumstance. Interestingly, I've since learned that for BRCA mutation carriers, the mean doubling time was 45 days with the average for mutation carriers diagnosed under age 40 to be 28 days. I know that I'm in the minority here because of my age, my BRCA status, etc; I'm the exception, not the rule.
Oftentimes, our physicians will shrug us off when we tell them that this thing came out of nowhere, but for a great deal many of us, that is kind of the case. Sure, the 6-10 years statistic is valid for many women, but not nearly as many as we are led to believe. As I said, those old numbers are akin to us being told that there's no variation to a diagnosis of breast cancer, and we all know that simply isn't true. Excluding IBC since it behaves completely differently in the sense that it involves the skin and usually doesn't present with a lump, the spectrum of doubling times can be anywhere from ultra-super-fast-growing 28 days, all the way to a very indolent and slow-growing 400+ days. We, as individuals, can fall anywhere on that spectrum. One study revealed DT's to be as low as 10 days and as high as 7,051 days.
I'm sorry this was long, but I hope I was able to add to the discussion.
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Lintroller, that was very helpful, thanks.
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No problem, Momine.
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that was very interesting, lintrollerderby. Thanks for showing up.
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Glad to help, kathec.
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Yesterday my CNP said a large tumor such as mine could have been started many many years ago, but too small to see on mammogram. But for it to grow as large as it did in 2 1/2 years between mammos, is definitely scary !! She says stats on ACS site are looking marginally better or staying about the same from 2009 to present, which was a bummer. But we did all we could do or was asked of us and just pray we stay NED.
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Hi,
I have to add to scary.
I have been doing u/s on a yearly basis since 2004-5 to monitor my benign tumor on my leftie. I didn't go for a couple of years an my last u/s was in march 2013 which came out clear with a new cyst where I found my BC lump. I got pregnant in October of last year and miscarried at almost 9w.
March 2014 I was dx with BC. So assuming that my last u/s was correct indeed, I became a stage III high ER/PR dominance in a year's time.
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It posted too early, need my coffee lol.
I was given a book prior to my surgery and it said that on average a BC lump becomes palpable when between 2-8years as a certain number of cells have to be present.
My BC was multifocal and I am convinced that my pregnancy accelerated things a bit and had I not been so obsessed with getting pregnant I would have not noticed these lumps in my breasts.
Lintreoller thanks for the info!
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Lolis - thank you SO much for the info. Just means now that my onc says the same thing to everyone that asks the question of how long tumor(s) have been present, no matter how big or small when discovered. Grrrrrrrrr
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I never asked my onc how long I had the tumor but she told me they figured it was 7 to 8 years. This shocked me because I had yearly mammograms without fail going back I don't know how many years but certainly many more than 12-15. It was deep and no one ever felt it even after I was diagnosed. I went for my yearly mammo at a hospital affiliated xray, MRI, etc. center and the technician I guessed was Eastern European with an accent and I thought to myself I wonder if she had been a physician in her native country, knowing that most doctors from EE were not recognized by the AMA so they went into similar technical jobs. Anyway, she took one additional x-ray and I wondered why but didn't ask, figuring the first one might not have come out clearly. I had a funny feeling the way she looked at me when I thanked her and said goodbye, something about the way her eyes skirted mine. Next day, phone call from hospital, come in immediately for another mammo and ultrasound. I was there within 2 hours and that tech took another mammo and said there wasn't anything wrong that she could see so I could go home. I told her I was told on the phone I was to have an US and she said she didn't see the need and wanted me to look at my mammo on screen compared with the prior year's and she thought there wasn't any difference. I was thinking of the first tech's experience and the way she looked at me and said I was told for a reason to have an US so this tech said I don't know why but I'll ask a radiologist and she was gone for awhile. Came back and said he wants to see you. Didn't tell me of her error, just that he wanted to see me. Anyway, the seeing me was for an US. No question about it. Told me not to go on a planned vacation and come back in 2 days. My journey began.
I'm writing this to say that if you have a feeling about anything stick to what you want. If I had listened to that second tech I wouldn't be here typing this right now. No one could feel it, it was so deep. I don't mean for this to be scary but to be educational in our being proactive.
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