A while ago I posted that I was going to make a survivor’s page on my blog for IBC patients 3+ years out and I had asked several people I know and got some positive responses. This is true, I did actually get about 8 people who were excited about it, and even thought about making a whole other blog/site just for IBC survivors. But I was surprised by who wasn’t interested. I know of many women I’ve met in various sites who are 8-15 years out without recurrance, they don’t have a personal blog or story anywhere, and they had no interest in posting about their experiences. I was like why, why wouldn’t you want to give hope and encouragement to those of us who are just beginning this awful journey. A fellow mom and IBC survivor who is 2+ years out said it this way, the answer she found is something along the lines of ‘they don’t want to tempt the devil’. Like if they talk about it, if they keep it ongoing, it could bring it back etc. I guess I can see that, especially from the older generation, but it was discouraging. Those people are the ones I want to hear about, I want to hear what kind of treatments they received 15-20 years ago that enabled them to be here today. So though 8 people is a decent response to start a survivor’s page, I’m not going to pursue it right now. I may at some point in the future if there isn’t one already, create a site that’s seperate from my personal blog and just for IBC survivors. Hopefully in 5 to 10 years, I will be here to create something like that. One thing I’ve found is each IBC patient is different, and depending on positive or negative statuses and doctors and countries – my friend Sue lives in Canada- each treatment plan is different accordingly. So we need to hear everyone’s different story, because it is rare that 2 are exactly alike.
For now, go to www.motherswithcancer.com and click on IBC tab to see the different moms who have or had IBC and are now survivors. There are links to their personal blogs also. Another site is www.breastcancer.org with a pretty good IBC forum, there is even a page that lists survivors, but it’s just their names, no links to blogs or info. That doesn’t really help me, but it’s there if you want to see. www.eraseibc.com is also there to talk to people that are survivors and ask questions, or just read answers to questions from seasoned IBCers. Again, not too many links to blogs or stories, but lots of info to have.
Being Her-2 positive is a rarer form of breast cancer, as is being Triple Negative. I didn’t think would ever learn so much about both types, but my friend Lori was diagnosed with IBC a couple of weeks after me, and while I’m Her-2 positive, she is Triple Negative. We have the same doctors and surgeons, yet our treatment has become so different. So if you stumbled upon my site in a random search and happen to be Triple Negative, she is the one you wanna chat with. And if you just want to support those of us in the battle or learn something new, go give her some support and love at http://lorimiller.wordpress.com . If you live in Canada and speak French- I love that she speaks both French and English I wish I could hear her accent in person:), go visit my friend Sue at http://rose-au-vent.blogspot.com/ she is Her-2 positive, but had a much different reaction than I did and also different findings with her surgery. She is now doing radiation once a day.
I never would have known I had IBC if not for the internet, I was misdiagnosed with IDC- Infiltrating Ductal Carcinoma- but I knew by researching online that that was wrong, and because of the internet I found my way to my oncologist and the surgical/radiation team that I have now, and also met the wonderful people I have all thanks to being online. So don’t feel like your story isn’t that important, I assure you it is, it might help save a life.