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Triple-negative inflammatory breast cancer treatment: My journey

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Terry with Dr alvarez.JPGBy Terry Arnold

I used to wonder if doctors at large hospitals like MD Anderson remembered their patients. Did they ever look up from the charts, tests and body exams to see the face of the person they were treating? 

Since patients come from all over the world, it seemed like it would be an impersonal relationship. That is, until I met Ricardo H. Alvarez, M.D.

Waiting to meet my new triple-negative inflammatory breast cancer doctor

When I met Dr. Alvarez, I'd already been through a year of cancer treatment for triple-negative inflammatory breast cancer (IBC).

You'd have thought I would've been nervous, but I wasn't. I felt confident.

I'd been happy with my prior oncologist, but he'd moved across the country. So, I had to make a change, too.

I was grateful I'd finished my almost yearlong cancer treatment plan prior to his departure because our bond was strong. I trusted him completely.

My initial triple-negative inflammatory breast cancer treatment
During the past year, I'd received 12 weeks of neoadjuvant chemotherapy with Taxol and four weeks of fluorouracil, epirubicin and cyclophopsamide. 

Because both of my breasts had cancer, I'd had a double mastectomy.

After the surgery, I received six weeks of radiation therapy once a day.  

Follow-up with IBC was demanding because the disease is known for a fast recurrence.  
Even though I was viewed as No Evidence of Disease (NED), I required special monitoring that might or might not include PET scans or MRIs, as well as blood work, every few months.

The double take
After my first year of treatment, I wondered if I could trust another doctor as much as I had my first one.

Back in the waiting room, I was face-to-face with the "new guy" and he was looking at me, curious. He did a double-take. "Can I help you?" he said after a quick glance around the room. "Did your friend have a question she forgot to ask?"

I laughed. "No, all is fine," I said. "I'm here for my appointment now."   

I explained that we'd met earlier that day. I'd been in an appointment with him a few hours early, accompanying another IBC patient to her first appointment.  

That patient had first been told the physical changes in her breast were normal and not to be concerned. She was scared.  

She had found me on an IBC support group and asked if I would come with her to her first appointment.   

As it turns out, we both had appointments with Dr. Alvarez for the first time, on the same day, just a few hours apart.  

Giving hope to a new IBC patient

Dr. Alvarez and I discussed my needs as a triple-negative inflammatory breast cancer survivor.

We also discussed the close contact he wanted with me as I was going to be the best judge of my body changes.

To be honest, I'm not sure how much I was listening. I was thinking about how he treated the woman I was with in the earlier appointment. I watched him walk her through her treatment plan, removing her fears and giving her hope.

He patiently answered all of her questions, never dismissing her concerns.  

As I watched the two of them together, I remember thinking that she and I would both be fine.  

And, for now, we are.

I was with my new friend the day she ran the bell at MD Anderson, signaling the end of her cancer treatment, and she too is now NED.

Terry 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 then.

Resources

Inflammatory Breast Cancer: How MD Anderson is leading the fight
What is inflammatory breast cancer? (IBC) (video)
Diagnosing inflammatory breast cancer (IBC) (video)

2 Comments

Thank you for letting me share my story.

Hope Always,
Terry

Thank you Terry for sharing your story! The outcomes are not always so good for everyone, and even so, as you mention...HOPE is essential. But, I believe also (as a stage 3C IBC patient) that it is also okay to face one's mortality. This journey has been more spiritual for me than physical on many levels. Accepting earthly life as a "temporary" gift is okay too! It really is anyway. Much greater things await us in due time. For myself, the greatest aspect of cancer is learning to overcome fear. Once that is accomplished, nothing else can phase or hurt us.
Blessings of Peace to you,
Karen McMahon

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