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The other side of the ribbon

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othersideoftheribbon.JPGTerry Arnold was diagnosed with a right inflammatory breast cancer (IBC) in August 2007 and a left contralateral tumor soon after. She had six months of chemotherapy, a double mastectomy and daily radiation treatment for six weeks. She completed treatment in June 2008 and has been an IBC ambassador and advocate since.

On this date five years ago, I was told, "Mrs. Arnold, we are sorry but it's most likely too late." It was after four months of hearing, "Mrs. Arnold, there's nothing seriously wrong."
 
What a jump, from "not to worry" to "you have an out-of-control cancer that most physicians have never heard of, and treatment knowledge is limited." 

Now before you think doctors shouldn't look at you and say when your time is up, we need to realize that there are serious conversations held between doctors and patients in those pink-lined offices. It's a place I call "the other side of the ribbon." 

Hope and surviving

After a triple-negative inflammatory breast cancer diagnosis, I'm in the 20% to 40% who make it to the five-year mark. Although I'll be always monitored by my oncologist, society labels me a survivor -- a word I'm most uncomfortable with.

I'd rather think of myself as surviving, and hoping that the next headache I feel is just a headache and not cancer in my brain.

The recurrence rate with triple-negative breast cancer and IBC are more common than not, and highly fatal, which you can see with the percentages I quoted. 

Please don't get me wrong, I'm not living with the mindset that the other shoe will drop any minute and I'll drop dead in the street. I learned, a few years ago, how to control and cope with the recurrence reality. 

Bad news takes longer

I remember the doctor sitting next to me, after completing what seemed like a billion biopsies, crying so hard he could hardly tell me my diagnoses.

I remember walking out into the lobby, with my bra full of ice, wondering how to face my husband, oldest daughter and her husband. How does one announce such news? 

I needed time to think, someplace not pink, someplace not emotional. 

I went to my job at the bank, a cold place all about numbers. It was perfect. 

I was lightly scolded for being late. My boss said, "Women get biopsies all the time." I remember replying, "Bad news takes longer than good news," and took my place at the teller line. I don't think another word was spoken to me that day.  

I don't remember telling my husband or children. I don't remember a lot of things. But I do remember love, care, concern and, most importantly, hope

Mostly, I feel grateful

Along the way to this day of celebration, I have met many wonderful people. I think often of the others diagnosed with this monster of a cancer, caring doctors and new friends.

There are the people who I've met on a new level, ones who I only thought I knew, as the pain of cancer gave me insight to them, and them a new insight into me.  

Every step has renewed me, every loss wounded me. Battled and scarred, I am here. 

Do I feel victorious? Like a survivor? A warrior who slew her dragon?

Some days I do. Some days I feel worn down by pink-washing or concerned over pink fatigue. Mostly, I feel grateful.

Resources

Terry Arnold shares her thoughts on the Moon Shot Program. (video)

2 Comments

Terry: Your blog is very uplifting. Thank you!

I have been struggling for a little over a month now to get a diagnosis...everything started with random pain on left breast, a rash, and hardness. Mammogram was negative, ultrasound showed wide abscess directly under skin, right of nipple, with fluid. Went on antibiotics which did nothing. Did biopsy and was told its a fatty narcrosis -- but I haven't had an injury and the hardness/rash was getting worse.

Four doctors later and three different diagnosis, I saw a breast surgeon last week. He aspirated the abscess and put me on another antibiotic...I don't notice a difference at all. The culture of the fluid came back with "no growth." So no infection. I still have a bruise like rash, the hard places on my breast are still there, and I'm still getting random pains...like needles. And now I have generalized soreness underarm and to left of neck.

I go back again Monday for re-evaluation. This surgeon told me it didn't look like IBC...but didn't do a punch biopsy either. Am I freaking out for nothing...should I just trust him? I can't help but think something is definitely wrong...things don't make sense to me. How can I have an abscess without an infection?

How did you finally arrive at a diagnosis?

Any guidance would be helpful...I'm scared, frustrated, trying not to think the worst...but...Ugh.

--Michelle

Michelle,

Thank you for writing me. I am glad my sharing my experience offered you so comfort in this scary time. IBC is very difficult disease to diagnose and most doctors, even breast doctors will tell you if they have treated IBC at all, it was only a few cases their entire career, so getting to a physician who is well versed with IBC is very important. There are so many factors that would give insight to your breast health and seems there are many very reasonable steps still to be taken prior that just chalk this off as a non issue. IBC is difficult to diagnose on a mammogram. A biopsy is very important in diagnose. If your surgeon is not willing to do a biopsy, could you ask for an ultrasound? An ultrasound is a very useful tool in IBC detection and maybe you can use that to reopen the conversation.

The words "Four doctors later and three different diagnosis," really jumped off the page at me, so clearly there is some difference in opinion in what is wrong. Until you are satisfied as to a diagnose, I would demand a punch biopsy as you need to have a clear understanding of what is happening in your body. The following might seem like a bold quote, but I think it is an important one,

"Any cellulitis of the breast that occurs in a non-gravid (not pregnant), non-lactating (not breastfeeding) woman should be assumed to be inflammatory breast cancer until biopsy proves otherwise."
Robert W. Carlson, MD, Stanford University;
Chair, National Comprehensive Cancer Center and Chair of the NCCN Breast Cancer Treatment Guidelines"

I hope you write back, good news or not so good news. I have walked in your shoes, I did it, I care about what happens to you and I hope the best long term outcome for you as well.

Hope always,
Terry

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