INFLAMMATORY BREAST CANCER

Terry Arnold was diagnosed with triple negative Inflammatory Breast Cancer (IBC) in the summer of 2007.  Later she founded of The IBC Network Foundation, focused on funding research for this disease and advocating for the needs of women diagnosed with IBC. What follows is information I asked Terry to put together. For me, October is about education over awareness. Fact over fiction. Evidence over anecdotal. And now, Terry:

Inflammatory Breast Cancer (IBC) is a rare and highly fatal form of breast cancer that is not typically discovered by mammogram and often occurs prior to standard breast cancer screening age recommendations.

Most people are very uneducated about IBC, and misdiagnosis is a common reason for delayed treatment.  Although IBC is viewed as rare, only 4-6% of breast cancer diagnoses, IBC directly causes about 10% of total breast cancer deaths (i.e. 4000 deaths per year in the US) because of both aggressive biology and inadequate treatment.

Due to being classified as a rare disorder with only a clinical diagnosis, IBC does not have a medical encoding number and generally speaking, is not taught in medical or nursing school. Typically IBC does not form a lump but has other clear physical manifestations described in the post below.  As a breast cancer without a lump, IBC is typically not addressed in pink awareness campaigns however we feel very strongly that this form of breast cancer needs to be better known.

A common phase in the IBC community is “rare does not mean never” and for everyone to be more educated about IBC, we will save lives.

During October, for breast cancer awareness month, the IBC Network Foundation has been sharing daily facts about IBC on social media with the #IBCFacts hashtag. These facts highlight differences between IBC and other breast cancers in an effort to promote education about this clinically distinct disease. This post is a collection of these facts written by Terry and one of her volunteers, Dr. Angela Alexander, an IBC and TNBC researcher at MD Anderson. (Note from AM again: Angela is a great friend to the entire breast cancer community. She jumps in to clarify research findings and helps us sort through what may, at times, be impossible to decipher)

For these reasons, we are passionate about including IBC in the conversation so that more women are aware of this orphaned disease and ask that they share this information and advocate for increased research funding for this highly fatal 200-year old form of breast cancer. For more information regarding IBC, visit the IBC Network website at www.theibcnetwork.org or contact Terry or Angela on twitter at @TalkIBC or @thecancergeek.

1. 5% of total BC, but 10% of BC deaths.
2. What is IBC? IBC = a type of breast cancer. Has outward signs, and biopsy will reveal invasive breast cancer (usually invasive ductal carcinoma)
3. No molecular definition exists for IBC yet. Many studies at MD Anderson and elsewhere have tried to find one. We don't know why so hard! 
4. Who gets IBC? IBC doesn't discriminate. Young/old women can get this form of breast cancer (age 20-70+).  
5. IBC can arise during/shortly after pregnancy which can be a reason for delayed diagnosis. 
6. IBC doesn't care what race you are either. Caucasian, African-American, Asian, Middle Eastern...all races susceptible.
7. Diagnosing IBC is difficult -> not easy to see on a mammogram & often missed. Mammograms can look like this 
8. IBC skin thickening and diffuse tumor areas are more easily visualized by MRI & ultrasound.
9. Only one third of women with IBC have palpable lumps. IBC can be spread out over the entire breast very quickly. NoLumpStillCancer!
10. Have signs of IBC? Make a dr appointment promptly! IBC progresses quickly & earliest detection is at stage 3. 
11.  At diagnosis, 30% of IBC is already stage 4 (metastatic). The rest is stage 3. There is no early diagnosis possible.
12.  IBC cells on the move can block lymphatics around the breast. Result = IBC affected breast swells to 2-3 times size of other one.
13.  Several more differences from other breast cancers to be aware of: IBC breast can have shooting pains, or other physical signs.
14.  Common IBC misdiagnoses: mastitis, abcesses, reactions to bug bite. Antibiotics often prescribed if dr doesn't know about IBC. 
15. "Peau d'orange" (literally orange peel skin) is a classic appearance, but not required for diagnosis of IBC. 
16. IBC treatment is different from regular BC. If you are concerned, get IBC specialist attention - you're worth it. Get the best care! 
17. There are only a few IBC specialist clinics in the world. MD Anderson was first (and is largest), opened in 2006.
18. We mentioned IBC treatment is different. Order of care is critical. Chemo 1st, Mastectomy 2nd then radiation if stage 3. 
19. Lumpectomies are not recommended in IBC. There is no lump to remove. The skin which had/has disease must be removed. 
20. Radiation is not optional. Its job is to mop-up any remaining tumor cells scattered around that the surgeon couldn't see to remove. 
21.  We described IBC treatment yesterday. Its called a tri-modal approach. Did you understand why the 3 types of tx are all important? 
22. Stage 4 IBC treatment is personalized. Some might not get surgery & radiation, and stay on maintenance systemic drugs forever.  
23.  Despite the optimal IBC tx being published, 1/3 women w/ IBC do not receive good care. Article http://www.chron.com/news/houston-texas/houston/article/Study-Many-women-not-getting-correct-care-for-5682254.php 
24.  One reason for bad care is that IBC is not taught in med school. Even textbooks on BC often only have a few paragraphs on IBC.
25. Future IBC specialists learn IBC care specifics during residency/fellowship if they train at a high volume cntr w/ enough IBC pts.
26. Some pathological diffs: IBC is less often ER/PR+ vs other BCs. 40% of IBCs are HER2+. 30% = triple negative (ER, PR, HER2 neg). 
27. IBC metastatic patterns similar to other breast cancers. Bone is the most common distant site. Lung, liver and skin also very common.
28. Triple negative IBC recurrences, when they occur are often early events
29. On the other hand, making it past 5 years without a recurrence doesn't mean you're home free in IBC/other BCs.
30. Accurate stats on IBC stages & recurrence are difficult to find. 1 reason = IBC lacks an ICD code, even in the new ICD10 system. 
31. We don't know about any IBC-specific genetic predisposition genes. Regular breast cancer risk genes (BRCA1/2) are relevant in IBC. 
32. Family history of IBC is rare - but not impossible. Prior history of other cancers not necessary for IBC diagnosis.
33. IBC can be a second breast cancer diagnosis even if you had a prior mastectomy. Chest wall rashes may be a sign of secondary IBC. 
34. Breastfeeding your children doesn't seem to protect you from IBC, in contrast to some other breast cancers.
35. Healthy diets are good for maintaining a healthy weight. Obesity is a risk factor for IBC. But not all pts are overweight.
36. Intriguing epidemiological data exist about exposure to certain viruses leading to IBC. But viral etiology is difficult to prove.
37. Some interesting viral research examples in IBC http://www.ncbi.nlm.nih.gov/pubmed/25478862  and http://www.ncbi.nlm.nih.gov/pubmed/23418456
38. Last few days of IBC risk factors summary: IBC like most cancers = multi-factorial. Genes, environment, behavior, luck.
39. While IBC is still a significant problem, there is hope. We know some 20-30 year IBC survivors! Not a death sentence.
40. The IBC Network = full-time volunteer-run charity funding research as fast as we can. Help here: http://www.theibcnetwork.org/donate 

And guess what, as of December 30th, I'm happy to share: When it comes to IBC, there's now an app for that! For Apple and Android. Wow. So impressed.

Like it?  Share it!

ARE YOU A SHEEP OR A SHEPHERD?

ASK QUESTIONS. Ask lots and lots of questions.

Gather your information and then, make your very best attempt to remove some of the emotions associated with personal medical issues (or those of loved ones upon whose behalf you may be acting).

Try your hardest to incorporate logic and interject some critical thinking into the process. Ponder.

And then, make your decision.

Choosing Wisely is a campaign I was about which I was somewhat skeptical when it was first announced. It was less than a year after I began writing, I was primarily interested in chemobrain research, knew little, or quite possibly nothing, about evidence based practices and my emotions where pretty much out of control in CancerLand, Homeland (great show, by the way) and if I recall, pretty much any other land where I found myself.

Today, I'm interested in all research. Primarily, my focus has shifted to research which may hold the promise to stop the breast cancer deaths which are at the same rate for 40 years (cite my source? Clifton Leaf, Truth In Small Doses -shameless plug: do scroll down to the 8th-ish comment - wherein every single statement in the book is cited from its source). Today, I understand how to decipher evidence based from anecdotal or observational findings despite what may appear to be overwhelmingly compelling "proof." There's no proof until it's been properly studied.

Science. We hypothesize and then we develop the proper questions to attempt to prove the hypothesis. After that, we design research to help answer the questions so we can determine if we are on the right track. Sometimes we are on the train. Others we aren't even near the station. And yet, when the thought popped into someone's head, something was compelling enough to determine, "Hey, this is definitely worth a closer look."

There are plenty of failures. There are plenty of things that fail to meet so called end-points. Statistical significance, which is an accepted standard to advance the hypothesis to the next level of research, is quite a different animal than real significance. OK, so what in the hell did that just mean? A drug may be deemed to be statistically significant because it extended survival by weeks over the existing treatment. There's a foundation for an evidence based finding.

Yes, this is important to the science community but does weeks, very few weeks in some cases and at what cost to quality of life, hold significance for the rest of us. That's a rhetorical question and is on a path where I will not take this conversation. Too many gray areas and today, I'm choosing to be black and white.

One of the tests that is discussed over and over again? Serum tumor markers. This was going to be the sole way of putting my mind at ease during my annual oncology appointments. It was one of the first tests Choosing Wisely targeted as a potentially unnecessary test. I recall the announcement was made just before my annual appointment. I recall there was very little discussion between the oncologist and me. The hospital would be examining the reasoning behind the findings and would make a recommendation. Since that had not yet been done, there was no reason for debate or discussion. He hadn't had the chance to read everything that was published and one thing I will say about my oncologist. He's an outside the box thinker. He will make up his own mind after a careful and thorough review of the findings.

On that day, the blood was drawn. Tumor markers normal. Angst over. And the parting statement, "It's likely these tests won't be done next year." I recall walking out thinking, "Yeah, we'll just SEE about that."

In the year between April of 2012 and April of 2013, I participated on my first CDMRP panel as a consumer reviewer, I was invited to the annual San Antonio Breast Cancer symposium by Alamo Breast Cancer Foundation where I had lots of work to do. I wrote a lay abstract for a grant which was funded (Let's not go THERE for now). My mom was diagnosed with metastatic disease, right up there in the top five worst days ever. I participated in the AACR Scientist Survivor program.

I was beginning to understand evidence based practices, intellectually. Despite this chemobrain thing.

My "We'll just see about that," during my annual appointment turned into, "No thanks," when I was told the hospital's position on tumor marker testing. "We're advising against it but if you want us to do the test, we will." Score one for shared decision making.

I have come to realize that my issue was this whole early diagnosis narrative that permeates everything that has anything to do with breast cancer (indeed, most cancers) but in October, early detection is the message every single place I turn. And every single time, it elicits the same response. I think I've said "Bullshit" to my television so many times these past 15 days, anyone who happens to be in the room looks at me as if I've truly lost it.

Here's the thing. Early diagnosis of PRIMARY disease may help (some, most, many). Again, I'm not going down that path at this time. The issue at hand for me was the realization that, at this point in time, early diagnosis of a distant recurrence does NOT appear to improve overall survival statistics. Once metastasized, there are so many other things that come into play.

Based upon a robust body of evidence (cite my source? Not here.... just look at the mets statistics) being symptomatic and going to the doctor to have that headache checked, or the bone pain in your back looked at, or dealing with that cough because every respiratory infection we will ever have, pretty much for the rest of our lives, WILL BE indicative of lung mets when compared against elevated tumor markers, ongoing scans and finding the metastasis early does not seem to change outcome.

What is the sense in watching tumor markers rise and continuing to subject one's body to scans until something may (or may never) become large enough to show up on an imaging test. I'm working on this mindfulness thing so I began to examine this whole thing in a zen-like mindful place and I've determined the following.

I see where this became a problem for ME.

The early detection message that has been pounded into my head for decades.

Early detection of PRIMARY disease is not the same as early detection of a distant recurrence.

Early detection of a distant recurrence is a different animal and doesn't appear, with the current research findings, to make a difference. Mets discovered by tumor markers and scans vs. mets discovered because a symptom brought you to the doctor are, for the most part, created equally in terms of overall survival.

Again, I'll use my mom as an example. When she was scheduled for the biopsy on her bone, an accidental finding as they were watching a nodule on her lung, SHE comforted me. "Hey, what about those tumor marker tests. If they are normal, this bone thing must be nothing. Right?" And yes, in my mind, I remember this. "GREAT point, mom."

And during the course of that time, she mentioned several times, "Every so often, I get a pain right here." The words were emphasized as she pushed into the center of her rib cage favoring the push in one direction.

That is where the bone metastasis was found and her tumor markers, still today, are unreliable. Any time that test is performed, they are lower than mine ever were.

It was my personal experience that finally allowed me to remove my emotions from the decision making equation. Note: My emotions may still be all over the place. Check. They ARE still all over the place but not with regard to unnecessary testing.

I wonder if I didn't have such first hand proof if I would feel the same or would have been able to grasp the whole concept.

This was a very long way of saying, no matter what your choice, I get it. I really do. The intangibles matter. Anxiety matters and if testing is something that is going to help with anxiety, it's likely less expensive than weekly therapy and a lifetime of anti-anxiety medications. Unless, of course, there is an elevation in those markers. Then, let the testing begin, along with the anxiety and the best person I know to discuss this is Lori Marx-Rubiner whose metastatic diagnosis was a relief (her words, not mine). Rising tumor markers for a year..... and then, the scan finally showed something.

All I'm saying is what I always say: Empower yourself.

Ask the questions. Synthesize the answers. Sprinkle in the intangibles and then make your decision. What works for one doesn't necessarily work for another nor does it make one choice right and by default, the other, wrong.

An informed decision, regardless of how you got there, beats the knee jerk reaction every single time. A sheep just follows without thought, a shepherd, even if their belief doesn't align with main stream thinking, is leading their own path.

As for those personal aforementioned out of control emotions, not too much has changed... Circumstances, yes but one resolved issue and ten more seem to pile on. So, on all of those fronts, I'm still working out the kinks in my practice of mindfulness.


 Like it?  Share it!

CHECK THE FACTS @EVERYDAYHEALTH

This is what is referred to as a major #FAIL.

Note to everyday HEALTH.

Have your social media team fact check before they send out a stream of tweets.

Here are a few facts and a couple of opinions......

1-Lisa Adams died. Seven months ago. In fact, your tweet inviting her to co-host your upcoming health talk was sent one day shy of the seventh month anniversary of her death on March 6, 2015.

2-There is no way to prevent breast cancer. No matter how many healthy tips you plan on discussing, the best we can do is engage in risk reducing behaviors. And, for those who do everything right and still develop ANY type of cancer, know this. Every and any behavior you can think of to "prevent cancer" only controls about 30% in this fairy tale world of prevention. In other words, the other 70% is a crap shoot. We really have little control and tossing around the word prevent is a bit like the blame game. Not a fan. At. All.

3-The list of tweets started out with some solid invitations. Places that should be dispensing of advice. Hopkins, Mt Sinai Hospital, American Cancer Society, National Cancer Institute, breastcancer.org. And then, it went completely awry. Celebrities? Seriously??? I can think of no WORSE place to get medical information than from the mouth of a celebrity. What are their qualifications? Using their "star status" to raise awareness of the disease?? Can they share tips and tricks to help us get through a day? With many resources and often a cohort of people to assist them in their every need, hearing about their reality may not be too helpful for those of us who reside in a very different world than those with "star status."

We're aware. What we need is education about the facts.

Just a few facts: Early detection is no guarantee the disease will not spread and become a terminal illness. There are 110 deaths each day in this country attributable to breast cancer. That number hasn't changed much in over 40 years. And the average life expectancy once diagnosed with metastatic disease hasn't changed much either. If I remember the words of a very prominent and well-respected researcher from the NCI, "ten years of research and we've only extended the life expectancy by six months."

I'd like to make a suggestion. How about having a #healthtalk on October 14th about metastatic breast cancer?

As for the invitation to SusanGKomen, maybe we can start by asking why they have a need for dispensing salaries in excess of 100K to 44 of their employees? I understand it costs money to run an organization as large as Komen but I'm struggling to figure out why so many people are earning six figure salaries. What about the millions they spend on lobbying? I'm pretty sure when people donate money, they want to see it put into the hands of researchers or to those in need of financial assistance or help with their kids or rides to their chemo appointments. It appears from the latest tax returns, somewhere between 6 and 10 MILLION donated dollars are on those two line items. That's a substantial amount of money. I'm not taking a jab or looking to start a Komen bash, I just wanted to raise a little awareness and present a fact or two of my own.

This tweet is hurtful. I'm quite sure Lisa would have loved to accept your invitation and I'm sure those of us who had a special bond with her would have loved to hear her voice just once more.

Jumping on the pink bandwagon without doing just a bit of homework first? Definitely a tad bit irresponsible.

Like it?  Share it!

FINISHING TOUCH

I still have the photographs. You know, the photographs taken in the plastic surgeon’s office during that pre-surgical appointment. They are still in the same folder where they were placed nine years ago. There’s no need to look at them.

And I still remember my dismay over what I would be doing even though I knew then, and know today, medically, for me and my circumstances, I made the right choice.

I recall being told, "Women change their breasts all the time. What's the big deal?" This was well-intentioned, said to make me less fearful. Instead, I was irritated and annoyed, thinking to myself, "You can't seriously be comparing cancer surgery to breast augmentation???" Instead, I glared and I vividly remember saying just two words, "REALLY? Nipples." 

Not only is the image of my pre-mastectomy body seared into my brain, I feel as though I had an out of body experience on the morning of September 19, 2006. As I shared in my blog post on my "mastectoversary" I can see myself peering inside the shower. Watching my tears mixing with the water that was washing over my body, one final time before it would be forever altered, is somewhat surreal. The memory is vivid. 

I don’t recall looking at surgical photos in the days and weeks leading up to my surgery. I was so consumed with making the best medical decisions, the last thing on my mind was the cosmetic outcome. Now that I know better, the outcome, at the end of the day, has had a tremendous impact on the next chapter but while I was still in treatment, living with tissue expanders for over six months was challenging.

Oh how I despised those expanders. I hated the way they felt and I hated they way they looked. I deliberately avoided mirrors until I had was covered with some form of clothing. This is a pattern that would continue for well over a year. Long after my out of body experience when I still had the parts that I was born with, not ones that would be skillful recreated by the hands of a world class surgeon, I avoided looking down or glancing at a reflection in the mirror.

It could have been easier. It should have been easier. It would have been easier and one of those milestone hurdles I could have jumped a lot quicker. It’s all about the finished product and when the choice to reconstruct is made, the finished product includes the nipple. Technically, the areola.

Ruth Swissa is a professional permanent makeup artist and skin care specialist. The key word in that sentence is artist. Before turning to permanent makeup, Ruth studied many different art forms. She’s quite accomplished and her work speaks for itself.

Ruth transforms people and in doing so, transforms lives. Recently, she developed temporary areola tattoos. Like the kids running around the carnivals with tattoos that are applied using water, Ruth launched her line of temporary areola tattoos which are applied in much the same way. Not only do they come in four different shades, they are available in three different sizes.  Sensible, right? Size matters and we’re all different.

It’s a non-invasive option for those who are finished with all of the reconstructive surgery and may just be done with the whole thing. It’s an option for those who, like me, have tissue expanders in place for an extended period of time.

I saw my plastic surgeon for my annual follow up a few months ago. “Ick” was the technical term he used when he saw how faded the areola tattoos had become.  Yes, I’m well aware of the “ick” factor. I’m back to avoiding looking down and glancing past mirrors while I’m getting dressed.

However, I got over the “ick” factor when I purchased Ruth’s temporary tattoos. I had no idea what to expect. Clueless, I applied the temporary tattoos, admittedly with a bit of skepticism, and when I peeled the backing off, I could not believe my eyes. This was precisely what I needed. They lasted at least two weeks (I know it was longer but I can’t recall how much longer). It may be a good idea to order another pair since the “ick” factor is back in play. It’s time for real tattoos again but that’s a cold weather procedure. Maybe I should think about a trip to LA where Ruth’s offices are located??

For now, I’m ordering another pair. And the really great thing about that? My purchase will begin a chain reaction of good things. Ruth donates a kit for each one sold. I’m happy knowing another woman will benefit from my purchase. Ruth is just being Ruth, giving back. And some unsuspecting woman may find herself holding her head slightly higher, confidence elevated because sometimes, it’s the littlest thing that can make a world of difference.

Like it?  Share it!

OCTOBER 2015-DAY 1: THE PLANE

I swore I was going to have my 31 days of facts about metastatic breast cancer prepared and would be posting a fact a day.

I have been a bit busy doing some rather important things for metastatic breast cancer research, behind the scenes by choice but I will share in the upcoming days.

So, this blog, this month may be barren on days, may have facts on days and may point out things that hurt me, just a little. Today, I'm a little hurt for someone.

Today is also the culmination of a lot of very hard work by a group of very dedicated researchers, brilliant minds whose focus on treating the already metastasized patient. Not preventing mets (very important to me), not preventing breast cancer (very important to my family members some of whom are in a 55% risk category despite no known BRCA mutation-one of whom will be an operating room days from now for the third time for an issue in the same breast) but directly impacting the lives whose needs are most urgent (like my mom). Stopping death, transitioning metastatic breast cancer from a deadly illness to a chronic, manageable condition while preserving quality of life.

Yes, today, 110 people will die of breast cancer in this country alone. Off the top of my head, I don't know the global number but according to the World Health Organization, over half a million lives were stolen by this disease in 2011.

If it wasn't a bit sad, it would be an "it figures" moment that I should awaken the morning and the first thing I see upon opening my eyes is this. Three texts on my phone from my son who is traveling with his girlfriend. I presumed there was a flight issue. I'm generally the "go to" person when anyone is stuck in an airport. But no. That wasn't the purpose of the text.

It simply said: "Blasting music at the gate" below this picture. Considering his girlfriend's mom is one of those whose lives was cut short by metastatic breast cancer just two years ago, I have to wonder how SHE was feeling with the blasting music and the festive atmosphere as this was on display. And THAT is why, today I'm a little hurt for someone. Someone left behind who watched the horrors of the reality of losing a mom, from a first row seat.

I just question the need for the expense associated with painting that ribbon on this jet. Aren't there underserved women who might have been helped? We're aware. In a NYC area airport, WE Are Aware. And in NYC, there are plenty of women in need of services, too.

It's time for some action, and it doesn't have to involve ribbons and pink paint.

I'm not sitting in judgement. I'm just being a Mama Bear protecting my cubs and those who are dear to them.

She's hurting and on day one of her vacation, she's reminded of an anniversary day she struggled through, just a few short weeks ago.

It's not a party.

Let's be mindful of everyone affected by this.

PLEASE.

I'm just sayin'

 Like it?  Share it!