Comments on: Is IBC rare? http://www.ibcsupport.org/blog/2007/06/11/is-ibc-rare/ News and ideas from the IBC support community Sat, 05 Jul 2008 15:49:40 +0000 http://wordpress.org/?v=2.2 By: Surprised « Toddler Planet http://www.ibcsupport.org/blog/2007/06/11/is-ibc-rare/#comment-36 Surprised « Toddler Planet Thu, 31 Jan 2008 11:52:58 +0000 http://www.ibcsupport.org/blog/2007/06/11/is-ibc-rare/#comment-36 [...] I was surprised to learn that inflammatory breast cancer, while rare, is not the rarest of breast cancers.  That distinction instead may well belong to Paget’s [...] […] I was surprised to learn that inflammatory breast cancer, while rare, is not the rarest of breast cancers.  That distinction instead may well belong to Paget’s […]

]]> By: Marilyn 'Mare' Kirschenbaum http://www.ibcsupport.org/blog/2007/06/11/is-ibc-rare/#comment-24 Marilyn 'Mare' Kirschenbaum Tue, 30 Oct 2007 15:33:24 +0000 http://www.ibcsupport.org/blog/2007/06/11/is-ibc-rare/#comment-24 Statistics are truly a sore spot. The majority of physicians do NOT report Inflammatory Breast Cancer to cancer registries. "They" report the patient has advanced breast cancer, Stage IIIb or Stage IV or Metastatic Breast Cancer. This also applies to death certificates. People are not aware of this and now realize there are States that do not have to report their patients with ibc to cancer registries. Therefore, statistics are not only outdated by the time the data is published but NOT accurate. As ibc advocates we are the only people who can change this. When a patient is diagnosed with ibc, they should not only get all of their reports and blood tests BUT make sure the words Inflammatory Breast Cancer is on their charts. Statistics are truly a sore spot. The majority of physicians do NOT report Inflammatory Breast Cancer to cancer registries. “They” report the patient has advanced breast cancer, Stage IIIb or Stage IV or Metastatic Breast Cancer. This also applies to death certificates. People are not aware of this and now realize there are States that do not have to report their patients with ibc to cancer registries. Therefore, statistics are not only outdated by the time the data is published but NOT accurate. As ibc advocates we are the only people who can change this. When a patient is diagnosed with ibc, they should not only get all of their reports and blood tests BUT make sure the words Inflammatory Breast Cancer is on their charts.

]]> By: Pete Bevin http://www.ibcsupport.org/blog/2007/06/11/is-ibc-rare/#comment-10 Pete Bevin Sun, 22 Jul 2007 03:05:05 +0000 http://www.ibcsupport.org/blog/2007/06/11/is-ibc-rare/#comment-10 There isn't really an accepted figure, but the best guess for the USA is somewhere between 10,000 and 25,000 per year. For the reasons I give in the article, the incidence rate is probably underreported. There isn’t really an accepted figure, but the best guess for the USA is somewhere between 10,000 and 25,000 per year. For the reasons I give in the article, the incidence rate is probably underreported.

]]> By: WhyMommy http://www.ibcsupport.org/blog/2007/06/11/is-ibc-rare/#comment-9 WhyMommy Sun, 22 Jul 2007 02:58:34 +0000 http://www.ibcsupport.org/blog/2007/06/11/is-ibc-rare/#comment-9 Is there a generally accepted number for the number of IBC diagnoses per year? I'm having trouble getting a handle on the real numbers from the information I've found to date. Thanks! Is there a generally accepted number for the number of IBC diagnoses per year? I’m having trouble getting a handle on the real numbers from the information I’ve found to date.

Thanks!

]]> By: Vassilis Ferentouros http://www.ibcsupport.org/blog/2007/06/11/is-ibc-rare/#comment-2 Vassilis Ferentouros Tue, 12 Jun 2007 05:36:16 +0000 http://www.ibcsupport.org/blog/2007/06/11/is-ibc-rare/#comment-2 What you have written is absolute true and what I would like to comment is that many doctors classify IBC as LABC Can this be true also? It widely accepted that the OS of IBC patients is far more worse than any other breast cancer. Can anybody tell me is this because of treatment delay or is it due to the aggressiveness of IBC?? Because if it is the only reason for the gloomy outcomes only the delays in diagnosis then the matter can be resolved through proper training of both the population as well as the doctors What you have written is absolute true and what I would like to comment is that many doctors classify IBC as LABC
Can this be true also?

It widely accepted that the OS of IBC patients is far more worse than any other breast cancer.

Can anybody tell me is this because of treatment delay or is it due to the aggressiveness of IBC??

Because if it is the only reason for the gloomy outcomes only the delays in diagnosis then the matter can be resolved through proper training of both the population as well as the doctors

]]>