Dedicated to all the doctors who mis-diagnose Inflammatory Breast Cancer (IBC) as an infection.
We are midway through breast cancer month, and since starting my blog I realized I’ve never written during this month.
I think I now know why. It angers me that only during this one month does the media do stories on this disease. Sadly, more often than not, the stories on Inflammatory Breast cancer either don’t go far enough to ‘really’ help people understand this devastating disease, but in too many cases they get the facts wrong. SO, I will list the symptoms and pray it helps someone who reads this, and has never heard there is another type of breast cancer. One of these symptoms may appear, but every person is different, and more than one symptom may appear:
1. Overnight swelling of one breast (rare but can also be both).
2. Sudden appearance of a bruise, and you know you haven’t injured yourself.
3. Itching in one spot of the breast that no amount of creams can calm.
4. Warm or even hot to the touch.
5. A rash in a small area of the breast (not the entire breast).
6. An inverted nipple.
7. Skin looks like the outside of an orange with a pitted appearance (this is usually after the swelling has gone unnoticed for a few days).
8. A ‘heavy’ feeling of the breast, unlike the other side.
9. A bug bite look.
10. Pain, sharp at times or a dull ache.
11. No lump in most cases.
As I said, some people have many or just one of the above symptoms, and MEN, you too can get IBC.
You and no one else know your body. Stand in front of a mirror, as unlike the lump so many are taught to feel for, IBC can be seen. It shows on the outer surface of the skin. Know your own body, it could save your life.
There are four stages to any cancer, and IBC is stage 3B by the time you notice your symptoms, and a mammogram is useless because this breast cancer lays in sheets or nests and the ‘machine’ sees right through, thus, a negative result. Some IBC patients also may have a lump they can feel, but in most cases there is none which is why physicians ‘miss’ the tell tale signs.
Since I started advocating for education in 2003 when my daughter was first diagnosed, I have spoken with hundreds of women and some men who are quick to go to their doctor and explain and show him or her this sometimes overnight change which isn’t normal for them. I actually thought by now, fourteen years later that the same Google that many people go to and put in their symptoms, would be accessible to physicians, but sadly that hasn’t been the case in far too many patients. Reaction from physician’s ranges from: “you’re too young for breast cancer”…to: “It’s an infection and we will treat with antibiotics.” Dr. Massimo Cristofanilli, renowned for his pioneering of IBC has said, “If you don’t have a fever, which would tell there is an infection, why treat with antibiotics.”
I just read yesterday, October 14, 2017, a woman went to many doctors, and two specialists, for (5) months, before finally finding a surgeon that would do a biopsy and confirm what she already knew. Yes, it was IBC, and now instead of stage 3B she is stage 4. Time is of the essence with this very fast moving breast cancer, and timing is crucial to get into treatment to hopefully stop the rampage of these nasty cells duplicating and moving to other parts of your body (called ‘metastasize’).
A recent episode on ABC’s ‘The Doctors’, was about IBC. The panel had one attorney and three doctors. They joked that if a woman couldn’t get a doctor to take their patient seriously, they should call the attorney. No joke, as I would have told them the same thing.
One woman I met online a few years ago who had some of the symptoms listed above, was having the same problem with the doctors she sought out. I told her to take her computer to her next appointment and show them a piece that KOMO TV had done in 2006 called “The Silent Killer.” She did, and got a biopsy the same day, and yes, it was IBC.
PEOPLE, Doctors put their pants on one leg at a time, just like you do. They are not infallible and do make mistakes, mainly because they were taught that IBC is so rare they probably would never see a case. They are not infallible and do make mistakes, mainly because they were taught that IBC is so rare they probably would never see a case. CME’s (continuing medical education) needs to be done on this disease, but in too many hospitals and clinics it doesn’t seem to be a priority. I actually pushed in my State of Washington, so that doctors HAD to take a CME on IBC before they could renew their medical license, but sadly it never happened. We wouldn’t STILL be seeing so many mis-diagnosed patients if this would take hold across the United States. I will keep beating that drum forever.
Since Dr. Massimo Cristofanilli opened his first IBC clinic at MD Anderson Cancer Center in Houston Texas in 2006, there have been many clinics across the U.S. that have followed his lead. We are all very grateful that this man has made this disease his life’s mission, and now has opened his fourth clinic in Chicago.
Congratulating Dr. Massimo Cristofanilli on his devotion to finding the cause and the cure for IBC.
A teaching moment for you and your physician: http://komonews.com/archive/komo-news-special-report-inflammatory-breast-cancer