Does anybody know anything about very aggressive breast cancer?

I'm really sorry to hear about your friend. There are a lot of success stories on this board. They just need to find the right chemo to keep her disease stable. She will be on treatment for the rest of her life, but hopefully that will be a long time. It sounds like they're treating her aggressively. Perhaps the latest set back with hospitalization is more chemo related than cancer related. Wishing you a positive outcome! Hugs!

I could be totally wrong but I thought that DCIS was not an ivasive aggressive cancer. According to your post she was diagnosed with DCIS in October 2012 and in January 2013 was diagnosed with bone,liver and brain mets? It just doesn't sound possible to go from DCIS to mets in less than 4 months. Perhaps I'm misunderstanding your post. My intuition tells me perhaps she was initially misdiagnosed. I'm thinking she had an inital aggressive bc and was not treated properly hence the mets.

Could you please clarify the year that she was diagnosed with bone/liver/brain mets.I'm extremely sorry to hear  of your plight..your frustration must be agonising.

Kayb,

            I was very shocked ...thanks so much for helping me understand it all. I thought I had the whole DCIS figured out and I had no idea of any rare cases.

Beesie,

            yes this post did terrify me and sent me into a dark spin. It made me question what I had learnt about DCIS. I guess I'm very vulnerable because I do struggle with anxiety so I tend to get stuck in a negative cycle when I start getting confused about my own dx. Your answer to my post "The one that got away?" really helped.  

Thanks Beesie

Bsquared, I'm like you.  I hate having only vague information; I much prefer to have all the facts so that I can make a well thought-out, educated decision.

Since my diagnosis of DCIS-Mi 7 1/2 years ago, I've tried to learn as much as I can about DCIS and how it progresses to become invasive cancer.  As a starting point, as you mention, most IDC develops from DCIS. I've read however that in fact only 80% - 90% of IDC develops from DCIS. I've also read a number of studies that have analysed IDC samples to find that not all invasive cancer pathologies include a component of DCIS.  Most do, but not all.  I recall reading a while ago an explanation of how the rest of the IDC forms; unfortunately I can't find that article right now. 

When it comes to the discussion of DCIS evolving to become IDC, the information you provided from Duke is one of many theories about how DCIS evolves to become IDC.  Just today someone posted asking about this and I provided links to a lot of different articles that try to explain it and studies that have uncovered a genetic or biological factor that possibly triggers it.  The problem seems to be that there are so many different answers to the question that it just means that we really don't know yet what causes one case of DCIS to evolve to become invasive cancer while another case of DCIS remains DCIS.

The even bigger mystery for me is why it is that some women develop DCIS that keeps on expanding and spreading through their breasts as DCIS, and only eventually breaks out in small areas to become invasive, while other women develop DCIS that almost immediately transitions to become invasive cancer and then grows and spreads as invasive cancer.  In my case, I had over 7cm of very aggressive DCIS, but only 1mm of IDC.  Other women are found to have only a few mm of DCIS and a much larger area of IDC.  In both of these cases, IDC developed from DCIS, but the process of development was obviously very different.  I've done lots of reading on DCIS and I have yet to find any explanation.

The good news for those with DCIS is that no matter what the pathology of their diagnosis, no matter what the biology of their DCIS, no matter how aggressive their DCIS, if all the DCIS cells are removed from the breast and/or successfully killed off, then the survival rate is 100%.  The risk from DCIS comes only if there is an invasive recurrence (assuming that the diagnosis was made and treatment was done while the cancer was all still DCIS).  Even when adding invasive recurrences into the mix, the long-term survival rate for those diagnosed with pure DCIS (i.e. diagnosed as Stage 0) is in the range of 97% - 99%.

As for your friend's situation, first, let me say how sorry I am. I agree with you that her decline and death were incredibly fast, even for someone diagnosed as being Stage IV almost right from the start.  Although you're right that it's impossible to know when your friend's DCIS first appeared, I wouldn't conclude that it necessarily formed in the year between her 2011 clean mammogram and her mammogram in 2012.  When I was diagnosed, my DCIS showed up on my mammogram as two small areas of calcifications.  When all was said and done, the amount of DCIS that I had in my breast was much larger than what showed up on the mammogram.  So I had a lot of DCIS that didn't show up on my mammogram and maybe wouldn't have for another few years.  And the DCIS that did show up on my mammo?  My guess is that it had been developing for years but simply didn't show up on my mammogram until the time that I was diagnosed.  This is actually very common - many of us have areas of cancer that are much larger than what shows up on the imaging.  On the other hand, in your friend's case, given how quickly she declined, perhaps she had one of those extremely rare fast growing/developing breast cancers that in fact did move from DCIS to IDC to mets all within a matter of a 18 months.  Most breast cancers - even those that eventually develop to become Stage IV - are slow growing - but there are rare exceptions.  Your friend's situation might have been one of those.  I am so sorry.  I can't imagine the shock to her family and friends.

Bsquared, I agree.  Breast cancer is not a single disease with a single cause and single pathology.  It's so complicated.  Often on this board I read posts from women who complain that with all the money put to breast cancer research, why don't we have a cure yet?  But I look at just the tiny area that I focus on - DCIS and DCIS-Mi - and I see all the research that's been done without yet reaching any definitive conclusions. I was diagnosed over 7 years ago, and I've seen a lot of progress and new learning and new treatments in the years since, but even if we quadrupled the pace for the next 7 years, we still wouldn't be at the point of ending breast cancer.

I think the best hope - not so much for eliminating the development of breast cancer but for curing all cases that develop - is genetics and personalized medicine.  If we get to the point where we can analyse the genetics of every cancer and give each patient a specific treatment targeted to her unique cancer, then we might be able to 'cure' every patient.  But when you consider how varied breast cancer is, I just don't see that we could have individualized treatments for all types of breast cancer by 2020.

Hopefully though by 2020 we will have a much much higher survival rate. Not 100% yet, but closer than we are now.  And maybe by then we will be better able to avoid the development of breast cancer in at least some cases.