I'm going to bump up your question to see if anyone might be able to help you out. In the meantime, I'm going to see if I can find someone who can provide you with some meaningful perspective.
find others battling or surviving IBC
I would like to connect with others battling or surviving Inflammatory Breast Cancer. Is there a network for IBC?
Hey! My grandmother survived breast cancer with level5. Try to relize what made you cancer in the first place. Is it because of your living condition: Not eating health food? or HATRED and Anger in you? If you are looking for a solution first do the math yourself ask yourself questions like how did I end up having a disease? And then remember 4 out of every 5 people are schizrophenic.It is not bad thing to be crazy it is just not good to live this way because it hurts you!
Thank you for your responses. Knowing that IBC is a rare and fast growing monster can be a little frightening and I was beginning to feel alone because in the 4 months since my diagnosis, I have only talked with one person who's sister died from IBC. Even though others would say they had breast cancer or knew of someone with breast cancer, I really didn't feel like they understood what I was feeling deeply. In general I am sure we all experience the same fears with cancer, but I was feeling alone and needed to connect with others who shared my particular fight.
I just finished my 8 rounds of chemo, first 4 with A/C and last 4 with Taxol. I will have a double mastectomy in a couple of weeks with 30 radiation treatments to follow after that. I am also positive for ER & PR and will have hormone therapy. I am trying to stay positive and am strong in my faith. I will try the facebook support group you mentioned and continue to follow you and offer encouragement when I can.
I am a 6yr survivor with IBC.SO far still NED. There are many resources for IBC survivors out there. there is eraseibc.org, ibcsupport.org and on facebook there are a couple of groups devoted to IBC survivors. Then there is the IBC inflammatory breast cancer network, which is based in Houston Tx where we are funding research for survival and treatment of IBC. I had er/pr positive her2neg IBC,invasive bc and DCIS all together in one breast (lucky me). I was treated with A/C x 4 rounds dose dense, and then Taxotere 4 rounds dose dense. I am no longer taking AIs to combat the hormones and am NED at this time (no evidence of disease). I am 56 now, was 49 when diagnosed.