There are many ways that IBC is different than other breast cancers.
- It’s is rare. Only accounting for between 1-5% of all breast cancers
- It is the most deadly. Although much more rare, it disproportionately is the deadliest. It accounts for 10% of all breast cancer deaths.
- Treatment will always be tri-modal: this means that there are three treatments necessary for IBC: chemo, surgery, then radiation
- It’s a harder chemo. Not only does ibc automatically mean chemo, it is an aggressive cancer, so an aggressive chemo is necessary.
- Radical modified mastectomy is the only surgical option experts suggest. While other breast cancers can be treated with lumpectomies, or skin sparing mastectomies, IBC can only be treated with a radical modified mastectomy, which removes all of the breast tissue, two levels of auxiliary lymph nodes, as well as the trying to get all of the affected skin.
- Radiation treatment is more intense. Because IBC is resistant to radiation, radiation is cranked up, the radiation time is increased, and the radiation area is larger because of the skin involvement. Some experts even suggest twice daily radiation.
- One out of three diagnosed will be already at stage 4 with distant metastasis. This means that it had traveled to another part of the body outside of the breast and lymph node area. IBC tends to travel to the brain and bones.
- The earliest you can diagnose IBC is a stage 3. Two-thirds of patients are a stage 3at diagnosis, because the cancer has skin involvement.
- The reoccurrence rate for IBC is much higher than more common breast cancers. This can be as high as 50%.
- Younger women have a tendency to get it. The youngest I personally know was 27. I was 37: but the average is 52.
- Women of African lineage are disproportionally affected with IBC compared to other breast cancers.
While a lot of this is bad news, it is really good news that there is progress happening. There are clinical trials for inflammatory breast cancer, clinics, research and drug development. The overall survival has changed from being a death sentence to patients seeing complete responses and even some women living 20 years since diagnosis and still having no evidence of disease. You never know what the future may bring. Your story is different. You are different. And although I feel it is important to educate and share this information, don’t ever feel that there isn’t hope. I truly believe there is hope. Remember, statistics are based on past studies, which especially in inflammatory breast cancer’s case, means a longer history past. IBC is rare, and so it takes longer to gather the data.
For me, having this information gives me a stronger fight inside. I’m gonna be the woman still spreading IBC love and awareness in 20 years. You just wait and see.