Parents and Loved Ones: The Unsung Heroes

So much has been written about “pink” October that sometimes I want to scream. I have seen pictures of pink porta-potties, pink ribbons on salt shakers, pink mixers, and even a pink-handled gun from Smith & Wesson ... you get my drift I’m sure. We need to either do away with the pink or change the color for inflammatory breast cancer (IBC), because it’s not at all pink. It’s black and blue, purple, and sometimes just plain red.

We also have a plentiful supply of breast cancer warrior stories, but I haven’t seen much if anything about the warrior mothers, fathers, sisters, and brothers who feel as though they are sitting on their hands, unable to stop the deadly march of IBC through their loved ones’ bodies while they are helpless to do anything.

I was one of those mothers. In 2003 my only daughter was diagnosed with stage IV IBC that had already metastasized to her liver. I won’t go into the long four years she fought with everything she had to stay alive, nor will I bemoan the fact I couldn’t stop her from leaving me. I will, however, lament the fact there was no one to march for me, to carry my banner as a fighting mother; no support groups of other mothers and their family members, or even advice on where I could find a shoulder to cry on or suggestions of how to cope through the most dastardly event a parent could live through: Watching their child die right in front of them, slowly, painfully, with no lifeline to reach out to.

If it weren't for the internet, I wouldn’t have found those few mothers who would even talk about what they were going through. Sadly, the few I did find walked away when their child passed and didn’t want to talk about it ... at all!

I took another path. I became very vocal in my stance that the education of physicians was so poorly lacking in the field of IBC, and I took my message to the airways both on television and through a radio show I started. There were many IBC patients who supported my efforts, but not ONE mother, father, sister, or brother of a patient. To this day, which will be 11 years on August 29 when my daughter left this earthly plain, I still have seen only a few family members who continue to stress to anyone who will listen that IBC is not being diagnosed in a timely fashion nor treated properly when it is diagnosed.

Caregivers Need Support

I know personally many parents who fought with everything they had to make sure their child had the right doctors who understood IBC. They traveled hundreds of miles to take their child to an IBC specialist, and luckily, because of that, their child survived. But those parents faced the same hurdle that I did—no support for themselves: Crying into a pillow in the bathroom so their child couldn’t hear them, or sitting in their car, alone, literally screaming to God ... “take this from my child and give it to me.”

Doctors have a creed that states, “physician, heal thyself”... and parents need to heed that creed for themselves also. If we as parents fall down that never-ending parapet, we can’t help our child. And physicians need to tell their patients’ families the “pit” is dark, and deep, and they need as much—if not more—help than the patients themselves.

Where am I going with this writing you might ask? I feel someone with the ability to paint every porta-potty, every salt shaker, and various other things pink, needs to start a movement of awareness for families who are helpless bystanders in this battle to end all battles. HIPPA was a great law to stave off unwarranted eyes from encroaching on medical data, but it has been taken too far when parents can’t be allowed to know what is actually happening to their child. I know of what I write, as I fought the HIPPA wall, but of course got nowhere.

Beyond Pink: Building Awareness of IBC

I started this battle for better education for all women about IBC in 2003, but I fell down on the job of procuring a path to educate physicians. All the pink is directed at women mostly, but men get IBC, too, as they also get regular breast cancer. But during the month of “Pink October,” just ask one (if not more) people who march for money wearing and carrying pink banners if they know what IBC (spelled out) is, and it will be rare to find people who have ever heard of it.

A side note: Recently I had to change my own primary physician for insurance reasons. One of the first things I asked him was, “Do you know what inflammatory breast cancer is?” His answer actually shocked me: “No, really, but that isn’t my specialty so I would have no reason.” I picked up my paperwork, put my hands on my hips, and boldly went where most would not: “You sir, are the type of doctor who is killing women for your lack of knowledge. You sir, would be the first one a patient would seek out if they woke one morning to a large swollen breast.” He stared at me as if I had just crawled out from under a rock like a viper ready to pounce. Needless to say, I didn’t pick him as my new primary care physician.

I don’t have the answer to how it can be done, or who could start it, but there needs to be a place or venue for families to turn to—HIPPA or no HIPPA—so they can best help their children if or when the time comes that they need help for themselves.

For myself, I still try to help families dealing with the crisis of a child who has been diagnosed with inflammatory breast cancer, helping to direct them to IBC specialists throughout the country, and sometimes out of the country. There needs to be a place for parents and loved ones of someone dealing with IBC, because all the pink ribbons in the world are not addressing this issue, and it’s bigger than anyone would ever imagine.

Patti Bradfield is cofounder and past president of the Inflammatory Breast Cancer Foundation. She is also a coauthor, with Massimo Cristofanilli, MD, of the book Nobody Is Listening: Stories of Inflammatory Breast Cancer.