Inflammatory Breast Cancer clinical trials (by Judy)

Lyn just wrote about this yesterday. Please excuse some duplication, but I wanted to include my thoughts about this subject here.

Once upon a time, I thought that because Inflammatory Breast Cancer (IBC) is such a rare disease (1-6% of people with breast cancer have IBC) that IBC would be ignored in research and the most common form of breast cancer, ductal carcinoma, would get all the research and clinical trials. Don’t get me wrong; ductal carcinoma needs research and clinical trials . . . . but so does IBC.

You see, IBC is a very rare breast cancer, but it is also the deadliest of the breast cancers. Because IBC doesn’t always present with a lump, it is sometimes misdiagnosed as mastitis or some other breast condition.

According to the Inflammatory Breast Cancer Research Foundation, symptoms of IBC include:

* Swelling, usually sudden, sometimes a cup size in a few days
* Itching
* Pink, red, or dark colored area (called erythema) sometimes with texture similar to the skin of an orange (called peau d’orange)
* Ridges and thickened areas of the skin
* Nipple retraction
* Nipple discharge, may or may not be bloody
* Breast is warm to the touch
* Breast pain (from a constant ache to stabbing pains)
* Change in color and texture of the areola

Also, the risk factors of the more common breast cancers are not considered risk factors for IBC.

My once-upon-a-time fear is no longer a fear. You see, just yesterday, I received a kind, informative, and hopeful email from Lucy Richardson who works for the esteemed The University of Texas MD Anderson Cancer Center. I’m going to quote her email here.

Thank you for sharing your experience with Inflammatory Breast Cancer. I thoroughly enjoy reading your frequent blog posts. I am truly amazed by your strength and optimism. I hope you get the opportunity to visit the beach in North Carolina. You are very deserving of a relaxing vacation.

I wanted to contact you a line because I was so moved by your blog. Not only do you give a voice to Inflammatory Breast Cancer, but you engage your readers and make this issue very personal. As you know, IBC is such a heartbreaking disease, but we’re all doing our best to ease it’s burden. I’m writing because I think you and your readers would enjoy learning a bit about the clinical trials currently being conducted for IBC patients. My hope is that we can increase IBC awareness and find a cure for this devastating disease. Please see the link and let me know if you are interested. We would be honored to be considered for one of your posts. Thanks very much and let me know if you need anything else. All the best and keep fighting!

The link she refers to lists some clinical trials that The Morgan Welch Inflammatory Breast Cancer Research Program and Clinic at MD Anderson are undertaking.

OF COURSE I’ll write about their Center and it’s clinical trials. This gives me hope: hope that this rare disease isn’t being ignored; hope that incredible doctors and researchers are studying this horrible disease; hope for new and better treatments for IBC, allowing people with IBC to live longer, more quality lives; and, finally, hope that someday there will be a cure for IBC.

I was uplifted by Lucy’s email. I have more hope now than I’ve had in a long time. I’m on a new course of chemo, one that, so far, has minimal side effects. It’s a lot easier to feel better emotionally when you feel better physically. I’m hopeful that I’ll be part of the 70% who have success with this new protocol. And I’m incredibly encouraged by the work that is being done by The Morgan Welch Inflammatory Breast Cancer Research Program and Clinic at MD Anderson.

So, thank you, Lucy, and thank you, Morgan Welch Inflammatory Breast Cancer Research Program. You give me hope, and hope is nothing to sneeze at. 🙂

Cross-posted to Just Enjoy Him.


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