I have IBC and a question to ask

Yes, Ellen, I know more than one person who is triple negative IBC and has passed the five year mark without even a recurrence. 

Everything you're feeling is totally normal.  I know this is very hard and I struggle with it myself and especially when I think about my own small children, but try very hard not to worry about a future that may never happen more than you absolutely have to make necessary plans should something happen to you.  There is no preparing for a diagnosis, recurrence, or progression of IBC and all the worrying in the world wouldn't make such news any easier...you can only ruin today by worrying about what might happen tomorrow.  Try to enjoy today and push the bad thoughts away as much as possible.  Remember you have had a lot of physical trauma in the last 8 months and this depresses our emotions too...so be easy on yourself, and kind to yourself.  At the very least, give yourself a break every day of at least an hour when you just won't entertain any bad thoughts.  You are doing great and living your life through extraordinary challenges; hang in there and be proud of yourself. 

I was diagnosed with stage IIIC TNIBC in Jan 2010. Did 6 months of FEC chemo, bilateral mastectomy in Aug., twice a day radiation from Sep to Oct in 2010. Then another seven months of chemo after a 2 inch mass appeared in my brain and was removed. My only symptoms were major headaches! Went to MD Anderson from the beginning, at the time it was the only IBC clinic in the U.S. ( to my knowledge) They performed a craniotomy July 17, 2011 and removed the mass. My brain surgeon, who I love dearly gave me 6 months - 1 year! I was 31 at the time with two very small children but a tremendous amount of family support. I also developed blood clots in my left leg and lungs before my brain surgery and continue to stay on blood thinner injections to this day and also have an IVC port, double cautious!!

There were also two new spots that came up behind my sternum that were then treated with the six mo of chemo, I stated above-post craniotomy, and two types of chemo pills. It's now been almost a year and a half since my brain surgery and I have beat all statistics! I continue with a brain clinical trial at MD And and get MRI's every 3-4 months of brain and Pets of my chest, abdomin & pelvis. Speaking to oncologist currently about getting on some preventive chemo/treatment due to the high rate of reoccurrence. My Dr.'s tell me I am a miracle and continue to believe so for the sake of my family and children. It is very easy to get into your head...down deep, but I choose to remain positive and for the most part don't read research and statistic stories, only positive and inspirational ones that give me that extra push to continue on fighting this major nightmare I have yet to wake up from!! There is hope and I believe I will beat this as I hope all of you all do too! Please feel to reach out to me for support or questions!

I'm a triple neg IBC survivor of 9 years with no recurrence. It's definitely possible.

I was told the opposite from my oncologist. She said once I hit 5 years that my odds became the same if not better than other diagnosis. She felt that after 5 years, it was unlikely for IBC to reoccur. Only time will tell.