What is IBC?
I'm not a physician (by any stretch of the imagination), so anything that I write here is obviously based on my understanding of the literature from significantly more informed resources. I'd like to provide a short and simple summary on Inflammatory Breast Cancer (IBC) for friends and family, but I will link to additional resources below. Please refer to them for a more detailed explanation of IBC.
Now, in a few short sentences: Inflammatory Breast Cancer (IBC) is a rare and very aggressive form of breast cancer. The symptoms of IBC are often similar to an inflammation (swelling and redness), hence the name. IBC is caused when cancer cells begin to block lymph vessels in the skin of the breast. Additionally, IBC advances rapidly, sometimes within a matter of weeks or months. Patients often discuss the quick onset, sometimes seemingly overnight, and rapid expansion of a host of symptoms. When IBC is diagnosed, it is at either Stage III or Stage IV, depending on whether it has spread to nearby lymph nodes or metastasized to more distant parts of the body. The inflammation-like symptoms of IBC often results in the loss of precious time as many women are initially told that they have a benign infection and are given multiple courses of antibiotics in an attempt to resolve the symptoms. There is clearly a need for greater attention and awareness around the existence of IBC.
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For more information, please refer to any of the following resources:
https://www.cancer.gov/types/breast/ibc-fact-sheet
https://www.mdanderson.org/cancer-types/inflammatory-breast-cancer.html
Why haven't you heard of IBC?
Never heard of IBC? Welcome to the club! The first I heard of it was when a Radiologist mentioned it to me in passing at my first ultrasound on 11/03/2017. I'm ever so thankful that she did as her passing comment is what resulted in my advocating for a more aggressive diagnostic approach (with the driving force of my sister behind me). Bluntly speaking. IBC is very different from the more traditional breast cancers you hear about. The diagnosis process is more difficult, the prognosis isn't great, and the rate of recurrence is much higher. In fact, in at least 30% of IBC cases (mine included), there is no discernible lump to be found.
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Statistics on the occurrence of IBC vary, but IBC is estimated to account for only 1% to 5% of all breast cancer diagnoses. Historically there was no official diagnostic code associated with IBC, which has made tracking the rate of diagnosis over time difficult. For all intents and purposes, you can equate IBC with the tag of "orphan disease". This means that there has also been significantly less research into more effective treatment protocols for IBC or research to understand the genetic (or other) drivers behind the disease. This needs to change (I selfishly want it to, of course!). If you're inspired and would like to contribute to research on IBC, please refer to my "Providing Support" page.
So what is, really, the prognosis for IBC?
Let's be honest, this is likely the single question that's at the forefront of your mind. I am loath to touch on this subject due to the fact that statistics are, by their nature, backwards looking. Additionally, many of the current prognosis statistics are derived by tracking patients who underwent very different treatment protocols than I will. But I also recognize that questions around prognosis will continue to be raised. I, therefore, will answer this question with the data I've found so far with the intention of sharing it here and not discussing it in the future.
There have been some, though limited, advancements in the treatment of IBC, which are too new to be reflected in the prognosis statistics. I would rather focus my energy on fighting this damn thing than on worrying about the numbers. If, god forbid, I'm meant to be on the wrong side of the statistics then I will find myself there eventually. And let's be honest, we're all going to end up on the wrong side of some statistic eventually. Keeping these numbers in my mind won't accomplish anything. I therefore ask that if you are curious about prognosis data, that you take a look at the information below, but please don't ask me about it in the future.
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In a nutshell, these are the prognosis statistics I've found for IBC so far, but remember that almost all of them are outdated:
- Overall 5-year survival rate: ~40%
- Stage III diagnosis median survival rate: ~57 months
- Stage IV diagnosis median survival rate: ~21 months
- Recurrence rate: ~65%
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Again, let me reiterate that the numbers above are a simplistic take on a complex disease. I have things working to my advantage (having caught the cancer at Stage III) and things working against me (e.g., my cancer is triple negative). But I am getting my treatment at one of the best facilities in the world, MD Anderson Cancer Center in Houston, and am fortunate to be surrounded by family.
I intend to leave the numbers in the past (from whence they came), and focus on the future only. I hope you'll join me in that focus.
What does treatment look like for IBC?
Now this is the question I'm focused on! The shortest answer I can provide to you is that the current best standard for treatment of IBC is a multimodal approach. That means that IBC patients (at least those who are still in Stage III) go through chemo, surgery (mastectomy) and radiation. There are obviously additional factors at play here as to the type of chemo, frequency, when you go through surgery, just how much radiation, etc. But for an IBC 101 answer, let's leave it here. If you want a little more information, then by all means, keep reading!
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In my case, I have triple negative IBC. This means that my cancer doesn't have any biomarkers associated with cancers that are driven by a higher production of estrogen or progesterone or an overproduction of a protein called HER-2. This also means that it will be harder to fight and limits the additional drugs that could have been added on to help me, both during my initial chemo and afterwards to reduce the possibility of recurrence.
But the advantage of being at a place like MD Anderson is that they are pushing to do more research into IBC (even with challenges related to funding). In fact, they established a clinic dedicated to the treatment of IBC back in 2006 and do have several ongoing clinical trials. I am planning to participate in one such clinical trial in the hopes of improving my chances of a pathological complete response to the chemo (complete response would mean that there appears to be no cancerous cells left when the pathologist checks tissue samples after surgery is completed).
Please note that even if I do have a pathological complete response, I will still be required to go through surgery and radiation. Completing the additional treatment steps is necessary to try to eradicate any one single cancerous cell that may somehow have escaped chemo. IBC is a tricky and aggressive bugger, and surgery and radiation are required to help fight the chances of recurrence.
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If you go reading more about this subject, you will run into more terminology (e.g,. negative margins, radical mastectomy, lymphedema, and more). If enough people ask me questions about additional language and information, I will add more answers to this page of the blog. If not, I'll leave it here for now as I'm sure you're overwhelmed with data.