Happy 3rd annual Inflammatory Breast Cancer Awareness week! Can you believe that it's been two whole years since the first IBC awareness week in Iowa? I can't. The first IBC awareness week observation occurred within a few weeks of my last herceptin treatment. Wow. I'm almost a two-year cancer survivor.
The IBC awareness week started pretty simply enough. My sisters and cousin initiated the paperwork to have the governor proclaim the observation. A whole bunch of us went to the capitol to watch the governor sign the proclamation. It was a remarkable event because it occurred at the end of a long journey through cancer treatment, and it brought together everyone who supported me for the purpose of IBC education. Every year since then, the state offers to renew it automatically. My sister always says yes please, and so the governor signs a new proclamation that is identical to the first and then mails it to me. Yes, I have a stack of IBC awareness week proclamations. Doesn't everyone?
For me, October is more than just breast cancer awareness month. It is about IBC awareness. It is about my breast cancer journey that began on Oct. 20, 2010. It is about learning about other breast cancer journeys, both from patients and support people. No two breast cancer journeys are the same, just as no two patients are the same. In the spirit of learning about other people's IBC journeys and how they coped with them, here are a few IBC blogs from around web:
Like myself, blogger Lyn was diagnosed with IBC near her 30th birthday. She opted to reconstruct her breast, but unfortunately she is suffering numerous complications. Fortunately her cancer continues to be in remission and she is doing well. http://lynkelley.wordpress.com/2012/10/30/955/ "Life is short and we may get sick and not know where we will be in a year, but you also may be here much longer than you planned for as well"
Another blogger, Jenny, has a great blog about getting rid of her IBC, which she named Gertrude. http://getoutgertrude.wordpress.com/2008/08/ Unfortunately Jenny succumbed to her cancer a year ago, but her outstanding blog remains as a resource for people interested in breast cancer and specifically IBC. This is the most depressing aspect of IBC blogs--they often exist with their authors for only a short while.
This blogger is dealing with stage IV IBC and is "preparing for the future of her illness" http://bluecollarlesbian.blogspot.com/2013_08_01_archive.html Pretty raw stuff here, and the writing is darn good.
Yea, I'm depressed now, too. I had good intentions for collecting this list, but clearly this was not my best idea. All it did was remind me of why I never do Google searches of IBC. Ugh.
But seriously, the minimum that you need to know are the SIGNS and SYMPTOMS of IBC (copied from www.eraseIBC.org):
IBC symptoms may include one or some of the below:
- A breast that appears discolored; (red, purple, pink or bruised)
- A tender, firm and enlarged breast (sometimes overnight)
- A warm feeling in the breast (or may feel hot/warm to the touch)
- Persistent Itching of the breast (not relieved with cream or salve)
- Shooting or stabbing pain
- Ridged or dimpled skin texture, similar to an orange peel
- Thickened areas of breast tissue
- Enlarged lymph nodes under the arm, above/below the collarbone
- Flattening or retraction of the nipple
- Swollen or crusted skin on the nipple
- Change in color of the skin around the nipple (areola)
- A hardened area in the breast similar to a pencil lead, not a lump
If one or more of these symptoms continue for more than a week, talk to a physician immediately, and find an expert with experience in treating this particular type of breast cancer. Many women have to demand that their physicians "rule out" IBC, and (therefore) become their own best advocate, as more education is needed in the medical community regarding this form of breast cancer.Be well, everyone!